Podcasts about patient advocates

patients operation redress patient advocates

Play Episode Listen Later Jul 8, 2024 12:29

In this week's episode, Jeff Lazarus discusses the idea that the MASH community, including patient advocates, live in a "bit of a bubble," where the clinicians with whom they interact are part of the MASH community. Last year's ICER Public Comments session exposed them to an FDA Advisory Board of hepatologists...and it was a very different experience. Last year's conversation notes reveal what happened and the advocates' reactions:In March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). In this conversation, SurfingMASH revisits the topic after a public comments session that took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join co-hosts Louise Campbell and Roger Green to share a range of impressions.Roger begins by asking the group how the word empathy fits into this discussion. Tony shares that he was upset by the majority viewpoint of 15 featured voting members on a number of different issues. For example, 40% of these voting members suggested that a drug approval would have no impact on a caregiver's life. Tony asserts the importance behind people needing to be aware of the impact of NAFLD/NASH not only on the patient, but also the families and those close to them. Speaking from personal experience, Wayne shares that he was perplexed on the document's position that NAFLD/NASH is not considered to be a progressive disease. This leads Louise and Roger to insert comments around the pricing and economic analysis surrounding the discussion. As the conversation winds down, Mike returns to the conundrum of the voting results. Listen on to hear why his reaction was, “I literally fell out of my chair.”

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Operation redress: Patient Advocates

Tenderness for Nurses

Play Episode Listen Later Jun 16, 2024 36:05

Michael and Maddison are industry disruptors. They are known for the part they played in the Daniel Lanzer case, and have moved into the non-surgical cosmetic space.They are pushing for tighter regulations around advertising within the cosmetic arena as they view what is advertised as unethical and this in turn will cause patient harm.On this I agree that some have been doing the wrong thing, however, most of the practitioners only do the right thing by their patients and enhance their lives through self image improvement.This is an interesting podcast and gives you good for thought.Support the show: https://www.patreon.com/tendernessnursesSee omnystudio.com/listener for privacy information.

‘We are patient advocates': When ‘backing the blue' puts EMS in a difficult position

Inside EMS

Play Episode Listen Later Apr 26, 2024 23:54

Inside EMS cohosts Chris Cebollero and Kelly Grayson delve into a legal case out of New Jersey in this week's episode, in which law enforcement officers and EMS providers were recently charged with the in-custody, in-ambulance death of a patient under the influence of bath salts. The discussion also discusses a similar incident out of Colorado in which two paramedics and a police officer were convicted in the 2019 death of Elijah McClain after he was injected with ketamine. Chris and Kelly share vulnerable moments from their careers when they regret not advocating for their patient in the face of law enforcement actions, plus we dig into all this: The growing legal scrutiny of EMS practices How to use de-escalation techniques to mitigate contentious situations with law enforcement partners The ethical responsibilities of EMS providers This episode of the Inside EMS Podcast is sponsored by LogRx. Learn a better way to track your narcotics at LogRx.com.

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Patient advocates funded by Pharma

Plenary Session

Play Episode Listen Later Apr 17, 2024 26:14

Patient advocates, Pharma funding, and is MRD a suitable endpoint

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S5 - E7.4 - How MASH patient advocates plan to support Rezdiffra

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Play Episode Listen Later Mar 24, 2024 11:50

This conversation focuses on how the role of MASLD patient advocates might change and expand in the aftermath of Rezdiffra being approved. To Wayne Eskridge, this “raises an entirely new field of education and outreach,” because now advocates can do more than merely be supportive emotionally. Advocates can, quoting again, “refresh our message and have broader perspectives and share a more hopeful outlook to the future” and talk about clinical trial participation and other drugs coming down the line. Also, he notes that advocates can provide the education to bring new patients into the system and help deliver the information providers will need to know in order to treat them. Jeff McIntyre adds that this will raise a new set of questions for advocates to ask companies and the healthcare system in terms of support for patients with cirrhosis, more patient-friendly dosing, reimbursement…a range of issues. Roger Green shifts focus to ask how advocates can help slow the flow of patients into the system by reducing the rate of MASLD growth. Tony Villiotti says education is key and notes how NASH kNOWledge starts by educating children. Jenn Jones adds that education and promotion can give hope to patients with alcohol-related liver disease and those with the new category MetALD. She also notes that the label gives advocates new leverage to stress the importance of nutrition and physical activity.

S5 - E7.6 - MASLD Patient Advocates' Recommendations for Others after Rezdiffra Approval

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Play Episode Listen Later Mar 24, 2024 9:28

So far, this conversation has focused on Rezdiffra approval and its many forms of impact on MASLD patient advocates. This conversation considers their recommendation for others. The conversation starts with Roger Green's final question. He asks each panelist to identify a stakeholder group that can take a valuable lesson from this episode and what that lesson should be. Wayne Eskridge goes first. Wayne focuses on the need for Madrigal and the various professional societies to increase education and information support for the gastrointestinal community. Mike Betel and Jenn Jones hope the Rezdiffra approval will lead to greater research investment and a broader, deeper focus for their investments. Louise Campbell returns to the need for provider education, this time for medical nursing and allied health professionals. She also believes organizations need to recruit greater nursing capacity. Jeff McIntyre asserts that if nutrition and physical activity are critical adjuncts to drug therapy, the entire healthcare community needs to advocate for access and reimbursement to dieticians, physical therapists, exercise specialists, and other supportive professionals. Tony Villiotti returns once more to education, mentioning the need to increase scale. He also discusses some specific topics that will merit more focus. Finally, Roger Green discusses two different forms of optimism: optimism among patients that they can be treated and, separately, optimism among investors that increasing the scale and scope of their investments will provide good returns.

S5 - E7 - MASLD Patient Advocates Celebrate Rezdiffra and Discuss the Future

Play Episode Listen Later Mar 21, 2024 65:56

Last Thursday, March 14, Rezdiffra (resmetirom) became the first drug approved in the US for MASH. Five leading North American MASLD patient advocates join the Surfers to discuss their feelings about this approval along with the opportunities and challenges that lie ahead.00:00:00 - Surf's Up: Season 5 Episode 7Opening introduction from an excited, enthusiastic panel, including brief quotes taken directly from the episode discussion.00:05:55 - GroundbreakersEach panelist shares one piece of good news from the previous week.00:11:19 - Advocates recall March 14As March 14 progressed, advocates' attitudes moved from excited anticipation to anxiety to deep happiness. 00:17:41 - Advocates describe their feelings as patientsNone of these advocates are Rezdiffra candidates themselves, but each reflected on their personal experiences with MASLD and what the future holds for patients who are or will be candidates for Rezdiffra.00:22:33 - Identifying target patientsThis conversation starts with Roger Green asking the group to describe where the number "315,000 target patients" came from. After the group replies, Jeff McIntyre and Louise Campbell explain how this is different from a "warehoused" patient population, and Wayne Eskridge discusses the exciting, progressive Madrigal patient support program.00:29:53 - The advocate's role todayJeff begins this discussion by emphasizing the role GLI has shepherded and advocates have played in informing FDA about patients' key concerns for the label. He describes how these are reflected in the approval decision and label, with biopsy being the most obvious example. The other advocates agree, with Mike Betel emphasizing how closely the leading advocates co-ordinate with GLI and each other. Louise suggests it will be a "game changer" if FDA takes a similar view to labels for other metabolic diseases. Roger points to Madrigal's discussion of medical exception as proof of their commitment.00:37:10 - The advocate's role tomorrowAdvocates agree that this approval creates new, broader opportunities for education and outreach. To Jeff, the approval will allow advocates to ask bigger questions on emerging needs. He offers treatment for cirrhosis and drug reimbursement as two such areas. 00:41:22 - Slowing the patient flowRoger asks what steps advocates can take to slow the flow of patients through the progressive stages of MASLD. Tony Villiotti notes that this is the primary goal of NASH kNOWledge, starting with childhood education. Jenn Jones states that publicity about Rezdiffra may lead patients with MetALD or ALD to explore how they can protect their own livers and seek early detection. 00:46:15 - Overwhelming the systemLouise describes herself as "slightly fed up" at individuals who fear "overwhelming the system." Instead, she says, systems should build capacity to reflect the scale of the disease. Roger notes this may be harder to execute in the US than in countries where governments control their healthcare systems. Jeff points to the US Veterans Administration as a possible model for ways to build capacity. 00:52:21 - Emerging role of primary careLouise states that much treatment will shift to primary care over the next 5-7 years. Roger agrees and seconds Jeff's comments about the role the VA can play.00:54:55 - Closing question Roger asks each panelist to identify a healthcare stakeholder group that needs to take a lesson from the issues discussed today. Answers vary widely. 01:02:06 - Question of the WeekThe question asks what good ideas listeners have for other stakeholder groups in the aftermath of Rezdiffra's approval.01:02:54 - Business reportThis week's news on audience metrics, future episodes and why there will be no Vault conversation again this week

Patient Advocates Call for Greater Awareness and Investment in Fighting C.diff and Other Infectious Diseases with Christian Lillis Peggy Lillis Foundation

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Play Episode Listen Later Mar 11, 2024 21:00

Christian Lillis, Co-Founder and CEO of the Peggy Lillis Foundation is a patient advocate in the fight against C. diff infection. Clostridium difficile is an opportunistic infection of the gut that often occurs after taking antibiotics and can lead to life-threatening complications. Christian shares his personal story of losing his mother to C. diff and highlights the progress made in raising awareness and the development of new treatments for the infection. The Peggy Lillis Foundation emphasizes the importance of patient voices in shaping infectious disease policies and research and the need for community support to fight C. diff and other preventable infectious diseases. Christian explains, "Last time we did our most recent C. diff awareness month campaign in November, it was our most successful one yet. We reached around 23 million people through a mix of earned, print, video, and podcast media and a strong social media campaign. We also had it bolstered by media partnerships with Contagion Live and Pharmacy Times. As part of our programming for the month, we held a virtual town hall, and about 200 people attended. More than half of them were C. diff patients, survivors, and family members." "Other progress was at the end of 2022, and then in early 2023, two new therapies. Technically, they are classified as preventative by the FDA, but they are basically microbiome restoration therapies. As I said earlier, when you take antibiotics, there can be other causes. Still, when your gut microbiome, gut bacteria, and viruses get out of whack or depleted, you become very vulnerable to C. diff. And a reason why people struggle to get over C. diff is because their gut microbiome remains degraded. So these new two therapies, one is done by enema, one is given by capsule over several days, it's a really huge change for people who are battling recurrent C. diff." #CDiff #PeggyLillisFoundation #ClostridiumDifficile #CDifficile #PatientAdvocacy #CdiffAwarenessMonth cdiff.org Download the transcript here

Patient Advocates Call for Greater Awareness and Investment in Fighting C.diff and Other Infectious Diseases with Christian Lillis Peggy Lillis Foundation TRANSCRIPT

ceo co founders foundation fighting patients investment fda technically infectious diseases clostridium c diff patient advocates pharmacy times

Play Episode Listen Later Mar 11, 2024

Christian Lillis, Co-Founder and CEO of the Peggy Lillis Foundation is a patient advocate in the fight against C. diff infection. Clostridium difficile is an opportunistic infection of the gut that often occurs after taking antibiotics and can lead to life-threatening complications. Christian shares his personal story of losing his mother to C. diff and highlights the progress made in raising awareness and the development of new treatments for the infection. The Peggy Lillis Foundation emphasizes the importance of patient voices in shaping infectious disease policies and research and the need for community support to fight C. diff and other preventable infectious diseases. Christian explains, "Last time we did our most recent C. diff awareness month campaign in November, it was our most successful one yet. We reached around 23 million people through a mix of earned, print, video, and podcast media and a strong social media campaign. We also had it bolstered by media partnerships with Contagion Live and Pharmacy Times. As part of our programming for the month, we held a virtual town hall, and about 200 people attended. More than half of them were C. diff patients, survivors, and family members." "Other progress was at the end of 2022, and then in early 2023, two new therapies. Technically, they are classified as preventative by the FDA, but they are basically microbiome restoration therapies. As I said earlier, when you take antibiotics, there can be other causes. Still, when your gut microbiome, gut bacteria, and viruses get out of whack or depleted, you become very vulnerable to C. diff. And a reason why people struggle to get over C. diff is because their gut microbiome remains degraded. So these new two therapies, one is done by enema, one is given by capsule over several days, it's a really huge change for people who are battling recurrent C. diff." #CDiff #PeggyLillisFoundation #ClostridiumDifficile #CDifficile #PatientAdvocacy #CdiffAwarenessMonth cdiff.org Listen to the podcast here

S5 - E2.4 - MASLD Patient Advocates' Priority 2024 MASH Programs

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Play Episode Listen Later Feb 18, 2024 15:45

Leading MASLD patient advocates Jeff McIntyre (Global Liver Institute), Milan Mishkovikj (European Liver Patients Association), Tony Villiotti (NASH kNOWledge) and Wayne Eskridge (Fatty Liver Foundation) describe their respective organizations' priority 2024 MASH programs to co-hosts Louise Campbell and Roger Green. In this conversation, the advocates each describe their respective organizations' top project for 2024. Wayne Eskridge goes first, describing the Fatty Liver Foundation's annual "flagship" study, The State of NAFLD and NASH Care in America. This study, which has been going on for "a few years," surveys patients' experiences around diagnosis and treatment of their SLDs. This year, which increased focus on non-invasive testing and the anticipated availability of a MASH drug, should yield particularly interesting results. Tony Villiotti talks about the extensive "liver awareness" education work NASH kNOWledge is conducting with over 250 schools and community centers in the Pittsburgh area. As part of NASH kNOWledge's ongoing effort to communicate to children on their own level, Tony anticipates his 10-year-old grandson accompanying the team this year, dressed in a "Livvy the Liver" costume. Milan Mishkovikj discusses a program where ELPA leadership conducts liver screenings at the European Parliament in Brussels, which provides opportunities not only to teach legislators and executives about their liver disease but also to learn their own liver health status. Jeff McIntyre discusses GLI's Advanced Advocacy Academy, or A3, a program to create and educate liver health advocates across the globe. To use Jeff's phrase, the program is starting to "grow roots" and become a self-sustaining year-round activity. Louise Campbell notes that the common theme in all four programs is that they are patient-focused, and most are children-focused. Roger's final question is to ask what will constitute success for each organization over the next 12 months. The answers vary in specifics but carry the basic themes of education, access and drug approval common to the rest of the conversation.

S5 - E02 - MASLD Patient Advocates Plan MASH Activities For 2024

Breast Cancer Conversations

Play Episode Listen Later Feb 15, 2024 66:15

00:00:00 Surf's Up: Season 5 Episode 2 Co-hosts Louise Campbell and Roger Green sit with four leading MASLD patient advocates (Tony Villiotti of NASH kNOWledge, Wayne Eskridge of the Fatty Liver Foundation, Jeff McIntyre of the Global Liver Institute, and Milan Mishkevikj of the European Liver Patients Association) to discuss their plans and actions for MASH patients in 2024. The discussion covers the advocates' hopes and concerns for the year and the programs and efforts each considers top priority. 00:04:09 Meet Milan MishkovikjNorth Macedonian patient advocate Mishkovikj, a key leader in the ELPA, discusses how he became involved in liver patient advocacy and shares one fact about himself that might surprise you. 00:11:25 Groundbreaker Panelists share one piece of good personal or professional news from the previous week. 00:15:52 Anticipating Pi DayEvery year, Pi Day is March 14. This year, that date has extra significance: the PDUFA Date for resmetirom approval at FDA. Advocates describe their "guarded optimism" regarding whether resmetirom will be approved. Wayne notes the potential for confusion and disappointment because not every patient who anticipates receiving the new drug will do so. Louise and Milan describe how US approval might affect their respective countries and regions. Jeff describes the extensive planning GLI is doing to prepare for a PDUFA decision that might raise as many questions as it answers, particularly around coding, reimbursement and definition of appropriate patients. He also describes a possible approval path for countries outside the US. 00:26:42 Post-Approval Planning As Jeff puts it, "We have to be planning for the second half while we're playing the first half on this," with essential questions about the implications of labeling on the topics he mentioned earlier. Roger asks what role patients might play in access decisions, to learn that the advocates have largely been "blocked out" of the process. GLI anticipates driving conversations with health systems around policies and access. The other US advocates do not anticipate doing so. Milan describes how ELPA will work with EMA, the European Parliament and other relevant groups. Louise adds private insurers and governmental payers to the critical post-launch lobbying and discussion targets.00:38:43 Where Does the Patient Fit? Roger asks where patients fit in the decision paradigms and how that might change over time. Louise shares her view that while patients might consume the medications, the real customer is either the prescriber or payer. Tony describes payers as "the last frontier" in learning how patients feel. Jeff returns to a range of "here and now" access issues GLI can address now. Milan and Roger discuss perspectives on the interplay of regulators, payers, providers and patients.00:49:13 Advocates' Key Programs Each advocate describes one key program they will run in 2024. Wayne describes FLF's State of NASH Care in America survey. Tony describes NASH kNOWledge's children's education programs. Milan describes continuing pilot programs ELPA started in 2023 to education the European Parliament. Jeff discusses GLI's Advanced Advocacy Academy, which "grew roots" worldwide in 2023. At different points earlier in the discussion, each advocate commended the support they get from GLI.00:56:30 Closing QuestionRoger asks what will tell each advocate whether they've been successful when they look back on 2024, 12 months from the recording date. Answers are powerful and vary by organization. 01:02:55 Business Report News on audience metrics, the upcoming Question of the Week, next week's nomenclature discussion and this week's Vault conversation.

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218. Inflammatory and Lobular Breast Cancer: Patient Advocates Share SABCS Insights

Play Episode Listen Later Jan 22, 2024 10:06

In today's episode, part of our MBC webinar series, we delve into the San Antonio Breast Cancer Symposium (SABCS). We aim to break down the overwhelming amount of information into digestible insights. We discuss key findings, particularly on inflammatory breast cancer (IBC) and invasive lobular carcinoma (ILC), with insights from Amy Parliman, a member of our MBC leadership team.Amy highlights the advancements in technology that outpace current treatment options and the importance of recognizing the unique challenges of diagnosing IBC and ILC due to their imaging difficulties. She shares that the symposium acknowledged these challenges and that there's growing research focusing on the genomic mutations specific to these types of breast cancer.We also touch on the significance of patient-centric care, reminding listeners that they have the ultimate say in their treatment decisions. Amy shares her personal experience with her treatment regimen and the importance of sticking with what works unless there's a compelling reason to change.The episode also covers the potential of contrasted mammograms and the need for different types of PET-CT scans for accurate diagnosis. We stress the importance of being informed and advocating for oneself, as treatments can vary based on individual cancer properties.As always, we remind our listeners that the information shared is from personal experiences and not a substitute for professional medical advice. We encourage reaching out to your medical care team with any questions or concerns.00:02:46 - Dr. Mankoff's Research on Imaging Technology00:04:02 - Genomic Mutations in Different Breast Cancer Types00:04:34 - Clinical Trials and Research Timelines00:04:56 - Genes Implicated in Inflammatory Breast Cancer00:06:02 - Imaging Challenges with Lobular Breast Cancer00:07:07 - Amino Acid Studies and PET-CT Imaging00:09:19 - Personalized Treatment and Informed QuestionsAttend a free virtual SurvivingBreastCancer.org event:https://www.survivingbreastcancer.org/eventsSurvivingBreastCancer.org's Mission: To empower those diagnosed with breast cancer and their families from day one and beyond. Follow us on InstagramLaura and Will: https://www.instagram.com/laura_and_will/SurvivingBreastCancer.org: https://www.survivingbreastcancer.org/Breast Cancer Conversations: https://www.instagram.com/breastcancerconversations/About SurvivingBreastCancer.org: SurvivingBreastCancer.org, Inc. (SBC) is a federally recognized 501(c)(3) non-profit virtual platform headquartered in Boston with a national and global reach. Through education, community, and resources, SurvivingBreastCancer.org supports women and men going through breast cancer. We provide a sanctuary of strength, compassion, and empowerment, where those diagnosed with cancer unite to share their stories, learn invaluable coping strategies to manage wellness and mental health, and find solace in the unbreakable bond that fuels hope, resilience, and the courage to conquer adversity.Support the show

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We Must Do Better at Being Patient Advocates

EMS Today

Play Episode Listen Later Dec 29, 2023 29:57

Eric Chase gets input and advice from EMS attorney Steve Wirth, Esq., EMT-P, after the guilty verdict of two Colorado paramedics that had been on trial for the homicide of Elijah McClain.

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Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog

Wait, how do you spell that?: A rare disease podcast

Play Episode Listen Later Nov 27, 2023 24:26

In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very familiar to the rare community. Kathi's husband, Dave, also joins us to talk about their journey together and why caregivers need support as well. If you'd to learn more about Alzheimer's Disease, check out the resources here. If you'd like to get in touch with Kathi, email her here: kathleenherzog4@gmail.com If you'd like to get in touch with Dave, email him here: daveherzog4@gmail.com Editor's Note: Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an Alzheimer's Disease journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.

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Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi

Wait, how do you spell that?: A rare disease podcast

Play Episode Listen Later Nov 10, 2023 25:27

In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and their experiences since Nell was diagnosed at a young age. To learn more about NMOSD go here: NMOSD at the National Organization for Rare Disorders You can pick up a copy of Nell's book here: My Hospital Story - Amazon Learn About Dr. Kang's work supporting the wellbeing of parents of children with rare conditions here: MaggieKangMD.com

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Patient advocates raise alarm about home care vetting

The Capitol Pressroom

Play Episode Listen Later Nov 7, 2023 13:59

November 7, 2023 - In advance of changes to how New Yorkers on Medicaid get re-certified for home care services they receive, Rebecca Antar Novick, health law unit direct for the Legal Aid Society, is urging the Hochul administration to slow down and rethink their plans.

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Bettina Ryll at the 2023 ESMO Conference

Vital Health Podcast

Play Episode Listen Later Nov 1, 2023 40:37

On this Vital Health Podcast, Duane Schulthess has a conversation with Bettina Ryll, the founder of the Melanoma Patient Network Europe. Bettina is regarded as one of the world's leading Patient Advocates, who dedicated herself to advocacy after the death of her husband from cancer. While most patient representatives don't have a medical background, Bettina has a Ph.D. in Biomedical Sciences from University College London. From 2015 – 2018, Bettina chaired the ESMO Patient Advocates Working Group, which was the first time that position was held by a non-oncologist.See omnystudio.com/listener for privacy information.

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Breast Implant Illness: REAL Not Rare, with Patient Advocates Amanda Porta and Robyn Towt

Intentionally Well

Play Episode Play 40 sec Highlight Listen Later Oct 3, 2023 91:47

In this eye-opening episode, I sit down with Patient Advocates Amanda Porta and Robyn Towt to have a much needed and detailed discussion about Breast Implant Illness.Both with remarkable stories and a passion for education, Amanda and Robynare on a prominent mission to spread truth among women across the world, in efforts to highlight the very real and COMMON happenings associated with breast implants.Amanda has worked in and throughout the beauty/plastic surgery industry for decades, and was ultimately inspired to pursue Holistic Health coaching. Now laser focused on guiding women with BII towards healing and optimal health, she has dedicated her life to redirecting the public's view on what health and beauty really entails. As someone who never saw critical or chronic health issues prior to implants, she's determined to use her voice and expose the darker sides of beauty procedures and the industry's dirty secrets.Robyn—now three-time cancer survivor—became co-founder of the Global Patient Advocacy Coalition (GPAC) and is also an administrator in various online support groups for women who are suffering from BII. She's worked extensively with Arizona legislators in passing an informed consent law for breast implant surgery, and the GPAC team has also partnered with the American Society of Plastic Surgeons (ASPS) to develop a patient decision checklist.With both of these women having experienced BII and explant surgeries, they know firsthand how real and truly life-altering these decisions can be. They believe every patient should be given the opportunity to make an educated and informed choice, and that means having ALL of the information, not just selected information.Amanda on Instagram: https://www.instagram.com/theholisticbeautycoach/Amanda's Lymph Website: https://www.lymphlounge.comRobyn on Instagram: https://www.instagram.com/robyntowt/Robyn on Facebook: https://www.facebook.com/robyn.towt.7GPAC Website: https://www.gpacunited.org/Show Instagram: https://www.instagram.com/well.with.vanessa/Vanessa Lopez on Instagram: https://www.instagram.com/thegiftofgoods/Vanessa's Linktree (Discounts etc.): https://linktr.ee/thegiftofgoodsEmail: intentionallywellpodcast@gmail.comHelp Abused and Homeless Animals In Need CUDDLY helps give animals a healthy life and a loving home. Help Vanessa's charity of choice above.Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.Support the showThis episode is for informational purposes only. Please consult a trusted health practitioner for individual concerns.

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74: Taking Charge: Carol Marak's Strategy for Solo Aging and Retirement Planning

Take Back Retirement

Play Episode Listen Later Sep 15, 2023 49:52

“Once you are aware of your top risks that you will likely face later on, it's amazing how your brain just starts to automatically think about, ‘Well that's interesting, I wonder if I could live that way.' Or ‘I wonder if I could pick up that exercise. I wonder if I could start walking a mile a day just to start getting in better shape. I wonder if I could change my diet instead of eating this cookie, I should maybe have this piece of fruit instead.' That's the way the mind works.” Ever asked yourself 'Who will take care of me as I age?' If so, this episode is for you. Our hosts Stephanie McCullough of Sofia Financial and Kevin Gaines of American Financial Management Group engage in a profound conversation with Carol Marak, an author, speaker, and mentor who has tackled this very question head-on. Her journey to a secure future will inspire you as she shares her path to financial stability, strategic relocation, and developing a comprehensive framework for successful solo aging. Our hosts along with Carol delve into the profound interconnectedness of retirement planning and life purpose, exploring how changes in one's living environment can dramatically influence health and fitness. Get ready to understand the challenges faced by individuals transitioning from significant careers and the role financial advisors play in helping navigate these waters. Stick around as they explore the significance of early planning for the future, taking into consideration factors such as family medical history, lifestyle choices, and overall life satisfaction. Carol emphasizes the importance of strong social connections and support base, regardless of whether you have kids or not. Tune in and get set to rethink solo aging through the lens of Carol Marak. Key Topics: The Pivotal Moment Carol Realized She Needed to Take Action (02:16) How Carol and Sisters Determined the Categories to Plan their Parents' Will (07:57) How Do You Know if You're Financially Stable? (15:27) How Do You Have Conversations with Clients about Finances? (19:41) Patient Advocates (25:52) Bringing Family History into the Picture (30:27) When to Start Thinking About Retirement (35:53) The Importance of Having a Support System (41:41) Planning is a Verb, Not a Noun (44:04) Resources: Carol Marak: Solo and Smart Aging Website Carol Marak on LinkedIn SOLO AND SMART: The Roadmap for a Supportive and Secure Future© (book) If you like what you've been hearing, we invite you to subscribe on your favorite platform and leave us a review. Tell us what you love about this episode! Or better yet, tell us what you want to hear more of in the future. stephanie@sofiafinancial.com You can find the transcript and more information about this episode at www.takebackretirement.com. Follow Stephanie on Twitter, Facebook, YouTube and LinkedIn. Follow Kevin on Twitter, Facebook, YouTube and LinkedIn.

[BEST OF] Musical Theater Nerd Patient Advocates Unite: Jennifer "Jay" Palumbo (EP273 Rebroadcast)

OffScrip with Matthew Zachary

Play Episode Listen Later Aug 22, 2023 37:02

On today's quirky show, I welcome Jen Palumbo, an epic human Energizer Bunny who takes a licking and keeps on ticking. Jen is a freelance writer, Forbes contributor, and women's health advocate, specifically for reproductive rights. In a spirited coincidence, it turns out we both went to the same college at the same time, were both Theater people, and have dozens of friends in common. We are ships in the night for sure. As fellow parents of IVF children, we bonded over the current state of the state. And as fellow Binghamton graduates, we bonded over Wegmans, being Theater nerds, and 1990s dorm life in the southern tier. Jen is a true Long Island: loud and proud. Let the hilarity, dark humor, and GenX Therapy begin. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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HIGHLIGHTS: Patient Advocates

The Patients Speak

Play Episode Listen Later Jul 12, 2023 28:07 Transcription Available

Episode 33 -- Patient Perspectives: Smell & Taste, Genetic Diseases, Cancer, and Multiple MyelomaIn this episode of "The Patients Speak" podcast, host Mark Stinson engages in insightful interviews with four inspiring individuals who share their experiences as patients and advocates in different health conditions.· Katie Boateng, head of the Smell and Taste Association of North America, discussing the importance of understanding the impact of smell and taste conditions on patients' daily lives.· Seth Rotberg, an HD (Huntington's Disease) patient advocate, emphasizes the need for genetic counseling and collaboration between patients and clinicians in the treatment and research of genetic and rare diseases.· Howard Brown, a two-time cancer survivor and author, shares his journey of resilience and hope in his memoir "Shining Brightly." He highlights the importance of forming a collaborative team and maintaining optimism while dealing with cancer.· Yolanda Brunson Sarrabo, a multiple myeloma patient advocate, emphasizes the significance of patient empowerment and effective communication with healthcare providers. She encourages patients to ask questions, express emotions, and consider participating in clinical trials.Here are key quotes from each guest:1. Katie Boateng:"People want others to understand the enormous impact that smell and taste conditions have on their day-to-day lives. There seems to be a lack of empathy or understanding for how impactful these conditions can be."2. Seth Rotberg:"Genetic counseling is becoming more prevalent and important to know about the next steps. It's crucial to have the right resources and support when facing genetic and rare diseases."3. Howard Brown:"You gotta get up out of bed every day and push further and keep going. It's okay to sleep in bed one day; you gotta get back up the next day. Keep moving."4. Yolanda Brunson Sarrabo:"Everyone isn't a public speaker, but you can write down questions and use the nurses and healthcare team as resources. We need providers and researchers to find us, as there is a diverse range of patients with unique perspectives."Tune in to this enlightening episode as patients share their insights and advocate for better understanding and communication within the healthcare system.(c) 2023 BSB Media

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Eliminate Your Medical Debt with Jared Walker from Dollar For

The Money Bare

Play Episode Listen Later May 22, 2023 44:18

What if I told you that there's a secret law out there that could eliminate your medical bills or, at the very least, reduce them if you're below a certain income level? And the income level is higher than you'd think-- way higher.Sounds too good to be true, right?Well, it's not. It's a real thing, and Dollar For is spreading awareness about this law so people can stop paying for medical bills that they don't have to pay.Dollar For is a non-profit organization dedicated to spreading the word about charity care. They help folks apply, either on their own or with assistance from their Patient Advocates... all for free. This week we sit down to discuss with Dollar For's founder, Jared Walker, and discuss the charity care program, how to find out if you qualify, and tips for dealing with an unexpected medical bill.See if you qualify: dollarfor.org/gethelpFollow on IG: https://www.instagram.com/dollarfor/Related Episodes:Quick Money Tip #20: Dealing with Unexpected Medical BillsMy Husband is Making me Pay for my "Luxury" EpiduralNegotiating a Medical Bill from $5k to $26?! & More Reddit Money StoriesClo Bare Blog: clobare.comFind me on social media at @clobaremoneycoachPlease rate and subscribe to support this channel!Free Money Guide: moneyrightguide.comFree Investing Class: lazyinvestingclass.comProduced by Elevate Media - Want to start your show? Reach out! This podcast is not intended as financial advice. Always do your own research and talk to your financial professional to discuss your situation. To read our full terms and conditions, head here:TERMS AND CONDITIONS

S4-E19.4 - Patient Advocates Describe the Reasoning Behind Their Testimonies

Play Episode Listen Later May 7, 2023 11:30

Back in March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). This week, SurfingNASHrevisits the topic after a public comments session took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) explain the why they chose to deliver their specific testimonies.Mike shares a compelling anecdote around the ongoing challenges which persist in the post-recovery of NAFLD. Specifically, he suggests the document made light of bariatric surgery as a treatment option and failed to consider the extent of preparations and persistence which it requires. Wayne expands on his disappointment with the fact that the document does not consider NAFLD/NASH as a progressive disease. As a numbers guy, Tony explains that he chose to discuss the significant fallacies in the populations and numbers chosen for the economic analysis.If you enjoy the episode, have questions or interest around patient advocacy and Fatty Liver disease, we kindly ask that you submit reviews wherever you download the discourse. Alternatively, you can write to us directly at questions@SurfingNASH.com.Stay Safe and Surf On!

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S4-E19.1 - How Did the Patient Advocates Come to Offer Testimonies?

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Play Episode Listen Later May 6, 2023 8:07

In March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). In this conversation, SurfingNASHrevisits the topic after a public comments session took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join co-hosts Louise Campbell and Roger Green to share a range of impressions.Roger leads by asking the panelists how each came to give commentary and be involved in the process. Both Wayne and Tony disclose that they have previously worked with ICER through different interviews and seamlessly discovered the opportunity to speak on this occasion as a patient advocate. Wayne subsequently invited Mike to deliver a testimony as well. Next, Roger provides a soft introduction which teases the group to consider their feelings about the document and why each chose to comment on the items in which they noted in their testimonies. Similar to the reactions on our first episode on the Draft Report, it immediately becomes clear that the patient advocates also hold reservations regarding a number of different aspects that comprise the document. On one positive note, Tony commends ICER's willingness to engage with the patient advocate community on a certain level.If you enjoy the episode, have questions or interest around patient advocacy and Fatty Liver disease, we kindly ask that you submit reviews wherever you download the discourse. Alternatively, you can write to us directly at questions@SurfingNASH.com.Stay Safe and Surf On!

S4-E19.2 - Patient Advocates React to the Word “Empathy”

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Play Episode Listen Later May 6, 2023 11:41

In March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). In this conversation, SurfingNASHrevisits the topic after a public comments session took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join co-hosts Louise Campbell and Roger Green to share a range of impressions.Roger begins by asking the group how the word empathy fits into this discussion. Tony shares that he was upset by the majority viewpoint of 15 featured voting members on a number of different issues. For example, 40% of these voting members suggested that a drug approval would have no impact on a caregiver's life. Tony asserts the importance behind people needing to be aware of the impact of NAFLD/NASH not only on the patient, but also the families and those close to them. Speaking from personal experience, Wayne shares that he was perplexed on the document's position that NAFLD/NASH is not considered to be a progressive disease. This leads Louise and Roger to insert comments around the pricing and economic analysis surrounding the discussion. As the conversation winds down, Mike returns to the conundrum of the voting results. Listen on to hear why his reaction was, “I literally fell out of my chair.”If you enjoy the episode, have questions or interest around patient advocacy and Fatty Liver disease, we kindly ask that you submit reviews wherever you download the discourse. Alternatively, you can write to us directly at questions@SurfingNASH.com.Stay Safe and Surf On!

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The Power of Patient Advocates and Professional Collaboration

The Modern Urologist

Play Episode Listen Later Apr 27, 2023 26:05 Transcription Available

On this episode of TMU, we sit down with Ray Wezik, the Director of Policy and Advocacy for the American Urological Association (AUA), as we dive into the world of patient advocacy and lobbying. Ray shares his perspective as someone who works with over 75 patient advocacy organizations to leverage their voices and become better advocates together. We discuss the importance of collaboration between patient advocacy and medical professionals for effective efforts, and Ray shares insights on how networking events are bringing patients and urologists to state capitals to advocate for solutions and funding for research programs. Ray also shares valuable insights on working with regulatory agencies like CMS, and the value of determining CPT codes.

Patient Advocates: who are they and how can they help?

Seniority Authority

Play Episode Listen Later Mar 2, 2023 32:21

Navigating the healthcare system can be overwhelming and confusing, and making informed decisions can be a daunting task. Because of this, we have people like Aileen Gerhardt. Aileen is an independent, board-certified patient advocate who can help make sense of it all. In this episode, Aileen will explain how patient advocacy can help people make informed decisions, how it differs from geriatric care management, and how a patient advocate might assist a client who is preparing for an elective surgery. She will also discuss why it is important to create a “micro board of directors” for support and how to find a patient advocate. Additionally, she shares her experience in working with solo agents, offers advice for putting together a “Go Plan” for potential medical emergencies, and provides advice for finding a patient advocate (and why she suggests using the Patient Advocate Certification Board).What's Next?What are your views, comments or questions on patient advocates)? Share them with us at info@seniorityauthority.org! Stay ConnectedGet in touch with our host Cathleen Toomey on LinkedInYou can also find Seniority Authority on Facebook, on Instagram, or you can connect with us on our website!Subscribe to our show on Apple Podcasts, Spotify, or anywhere you get your podcasts.

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Sylvia Reisman, Purity Patient Advocates, Leroy Hite, Cutting Edge Firewood, Steven Lustig, Loh Medical, and Todd Souto, Sutter, McLellan & Gilbreath

Family Business Radio

Play Episode Listen Later Feb 21, 2023

Sylvia Reisman, Purity Patient Advocates, Leroy Hite, Cutting Edge Firewood, Steven Lustig, Loh Medical, and Todd Souto, Sutter, McLellan & Gilbreath (Family Business Radio, Episode 41) On this episode of Family Business Radio, Anthony welcomed business leaders Sylvia Reisman, Leroy Hite, Steven Lustig, and Todd Souto. Sylvia Reisman talked about her health journey, the services […] The post Sylvia Reisman, Purity Patient Advocates, Leroy Hite, Cutting Edge Firewood, Steven Lustig, Loh Medical, and Todd Souto, Sutter, McLellan & Gilbreath appeared first on Business RadioX ®.

S4-E4.5 - Patient Advocates on “Getting the Message Out” as Approval of Drugs Approaches

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Play Episode Listen Later Jan 22, 2023 14:02

As the podcast hosts insights from our very own audience this week, we are extending three additional conversations from recent reviews of a particularly exciting NASH-TAG 2023. This session highlights perspectives from patient advocates Tony Villiotti and Michael Betel as they join Louise Campbell and Roger Green for coverage of the first day at the conference.The discussion begins with an idea from Tony and Michael that the cascading momentum the field is experiencing picked up steam at AASLD in November and carried on through the MOSAIC meeting in December. For advocates, the enthusiasm is largely centered on the likely approval of drugs in the near future and the sense of urgency this places, as Tony puts it, on expanding efforts to “get the message out.” Michael notes the importance of educating primary care physicians that there is something besides diet and exercise to support treatment. Louise adds that the alignment of specialties around screening is also critical to advancing Fatty Liver care. In response to a question from Michael, she makes explicit her belief that multidisciplinary alignment and statements will increase enthusiasm further. From there, Mike goes on to ask how the fact that diabetes and obesity patients might be on GLP-1s or dual agonists before being tested for liver disease might affect perceptions of the frequency of liver disease and/or the value of therapy. The remaining conversation focuses on the issue of how long patients must be on a medication. Louise likens it in her mind to autoimmune diseases, which will have flairs requiring medication. As the session winds down, Louise is discussing the breadth and depth of education she would like to see in the various medical stakeholder communities.…This week, Surfing NASH has focused on community engagement and incorporating insights and perspectives from the listeners. If you enjoy our content, we kindly ask that you submit a review wherever you download our episodes. We also encourage our audience to write us questions and look forward to integrating your on-ground experiences and ideas in the weekly discourse. Most important of all, we whole-heartedly thank you for your continued support as we set out to put a major dent in Fatty Liver disease in 2023 and beyond.Stay safe and surf on!

Sylvia Reisman, Purity Patient Advocates

North Fulton Business Radio

Play Episode Listen Later Jan 9, 2023

Sylvia Reisman, Purity Patient Advocates (North Fulton Business Radio, Episode 596) Sylvia Reisman, Founder and Chief Patient Advocate at Purity Patient Advocates, joined John Ray on this episode of North Fulton Business Radio. She discussed her personal health journey which led to her passion for patient advocacy and starting her business, her business philosophy, complex […] The post Sylvia Reisman, Purity Patient Advocates appeared first on Business RadioX ®.

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New Year HIGHLIGHTS from patient advocates

The Patients Speak

Play Episode Listen Later Jan 4, 2023 10:58 Transcription Available

Hello friends and welcome back to our podcast, The Patients Speak, and happy New Year 2023. If you just started listening to our show over the first few episodes, you know we've heard many great stories and examples from leaders on how to listen better. Specifically, we've heard from patient advocates on the ways they promote the patient voice and how they share a commitment to helping us all elevate that voice to a whole new level.To start the new year, we wanted to share highlights of five patient advocacy guests to give you an idea of how they saw ways to accelerate the patient journey. We'll talk to Wendy Bjork, The Empress of MS. Michael Sapienza, the CEO of the Colorectal Cancer Alliance. Pam Cusick, Senior Vice President of Rare Patient Voice. Andrea Wilson Woods, founder and president of Blue Faery for Liver Cancer. Alicia Lawrence of NORD, the National Organization for Rare Diseases.We hope you enjoy this summary of interviews with patient advocates. Thanks to guests like these, we've enjoyed a solid start to our podcast. Already, we've had more than 5000 downloads and we've ranked in the top 0.5% of all podcasts. We've received over 700 five-star reviews on iTunes. Subscribe now, and if you'd like to leave us a comment or review or even a suggestion for a future guest, we'd certainly appreciate that.Thanks again to our sponsor, 83bar. If you'd like to know more about 83bar and the work they're doing in patient recruitment, patient education, and patient empowerment to create better patient outcomes, visit their website at 83bar.com.And certainly, come back again for our next episode. We'll continue our conversations with patient advocates like these, along with healthcare executives, clinical researchers, and medical providers -- all to give us insight into what we need to hear when the patients speak.

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37-Patty Buddemeyer - Believe Big Patient Advocates

Believe Big Podcast

Play Episode Listen Later Dec 27, 2022 21:09 Transcription Available

Today, I am chatting with Believe Big's Lead Patient Advocate, Patty Buddemeyer. Patty has been a part of the Believe Big family since the beginning and she has worked with hundreds of patients who reach out in search of information and answers along their cancer journeys.Join me as Patty and I cover a lot of territory for patients and caregivers, alike. We will talk about the importance of being your own "health ambassador" and why having a supportive oncologist is key to a cancer patient's care team. Patty will also share some sensible things loved ones can do to help and support a family member who is on a cancer journey.Connect with Patty at Believe Big:https://www.believebig.org/Suggested Resource Links:Believe Big: Questions To Ask Your OncologistBelieve Big: Frequently Asked Questions About MistletoeBelieve Big Podcast with Dr. Steven JohnsonBelieve Big Video Series: I Have Cancer, Now What?Hyperthermia Cancer Institute (California)

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Getting Support for Medical Billing and Health Insurance Challenges from Independent Patient Advocates with Nicole Broadhurst Tennessee Health Advocates TRANSCRIPT

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Play Episode Listen Later Dec 20, 2022

Nicole Broadhurst, CEO and Founder of Tennessee Health Advocates, is an expert on the world of independent Health Advocates, including clinical, cancer, rare disease advocacy, and medical billing and health insurance. She emphasizes the risks patients face when they do not understand how their health insurance works and the role an independent advisor can play in sorting out details and solving problems. Nicole explains, "I would say the top risk for patient financial safety is that most patients don't understand their health insurance and the associated cost-sharing responsibilities. The words seem very simple, and we hear a lot about the deductible, coinsurance, copay, maximum out-of-pocket, and the total cost of coverage, which includes your maximum financial risk. Most people don't understand exactly how that all works." "The second one, I would say, is not understanding how to utilize our healthcare options. A lot of people don't understand when it's appropriate to use their health insurance or if it would be beneficial for them to waive their insurance benefit and pay cash instead. Also, they don't know, and they don't understand what facilities to choose and what providers or their real options are." #tennesseehealthadvocates #medicalbills #healthinsurance #reviewyourbills #understandyourbills #reviewyourmedicalbills #billingerrors #medicalbillingprofessional TennesseeHealthAdvocates.com Listen to the podcast here

Getting Support for Medical Billing and Health Insurance Challenges from Independent Patient Advocates with Nicole Broadhurst Tennessee Health Advocates

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Play Episode Listen Later Dec 20, 2022 17:07

Nicole Broadhurst, CEO and Founder of Tennessee Health Advocates, is an expert on the world of independent Health Advocates, including clinical, cancer, rare disease advocacy, and medical billing and health insurance. She emphasizes the risks patients face when they do not understand how their health insurance works and the role an independent advisor can play in sorting out details and solving problems. Nicole explains, "I would say the top risk for patient financial safety is that most patients don't understand their health insurance and the associated cost-sharing responsibilities. The words seem very simple, and we hear a lot about the deductible, coinsurance, copay, maximum out-of-pocket, and the total cost of coverage, which includes your maximum financial risk. Most people don't understand exactly how that all works." "The second one, I would say, is not understanding how to utilize our healthcare options. A lot of people don't understand when it's appropriate to use their health insurance or if it would be beneficial for them to waive their insurance benefit and pay cash instead. Also, they don't know, and they don't understand what facilities to choose and what providers or their real options are." #tennesseehealthadvocates #medicalbills #healthinsurance #reviewyourbills #understandyourbills #reviewyourmedicalbills #billingerrors #medicalbillingprofessional TennesseeHealthAdvocates.com Download the transcript here

Musical Theater Nerd Patient Advocates Unite: Jennifer "Jay" Palumbo

OffScrip with Matthew Zachary

Play Episode Listen Later Nov 22, 2022 36:07

On today's quirky show, I welcome Jen Palumbo, an epic human Energizer Bunny who takes a licking and keeps on ticking. Jen is a freelance writer, Forbes contributor, and women's health advocate, specifically for reproductive rights. In a spirited coincidence, it turns out we both went to the same college at the same time, were both Theater people, and have dozens of friends in common. We are ships in the night for sure. As fellow parents of IVF children, we bonded over the current state of the state. And as fellow Binghamton graduates, we bonded over Wegmans, being Theater nerds, and 1990s dorm life in the southern tier. Jen is a true Long Island: loud and proud. Let the hilarity, dark humor, and GenX Therapy begin. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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47 How hormones can mess with your confidence

Get Confident with Johnelle Hosking

Play Episode Listen Later Nov 19, 2022 53:01

Follow Get Confident with Johnelle Hosking on your favourite listening app and click the bell to get notified of new episodes as they're released.It means the world to me to have this information out in the world! For about 14 months now I've had issues with my hormones which have left me feeling like a completely different person due to the mood swings, low energy, and brain fog. I started working on my hormones with Pip from Patient Advocates and today we have her on the show to share her knowledge. Here's what we cover:How hormones impact our livesEnvironmental impacts on hormonesThe biggest effect on our hormonesThe age our hormones finally balance (for a time)How contraception interferes with our natural hormone rhythmHormones, PMS, and periods or nonperiodsMy own personal experience with hormones and the impacts they've had on my lifeCycle phases and how we feeland more!Check out Patient Advocates hereFollow Street Kai on Facebook hereConnect with Johnelle Hosking:Sign up to receive extra podcast insights, behind-the-scenes details, and bonuses straight to your inbox plus you'll get my Confidence Meditation completely free. Sign up here. Book your free roadmap call with me. We'll create your custom roadmap to get you career confident. Book yours here. Let's connect on Instagram and Facebook.

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Series Finale: If History Teaches Us Anything

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Play Episode Listen Later Oct 27, 2022 17:14

Welcome to the series finale of The Cancer Mavericks. In this final episode, we reflect on the first seven episodes through the lens of history and progress with a series of insightful conversations featuring some of healthcare's most influential and visionary voices across the past four decades. If history is a teacher, we have learned that change can happen, albeit slowly. But it is only when the people stand up, organize and activate their voices demanding change, that the culture will shift, the institutions will pivot, and the very system itself will be forced by the will of the citizens to bend towards the arc of justice. Thank you for joining us for this groundbreaking series. If you like this series, please leave a review and a rating on your favorite podcast app. To learn more about The Cancer Mavericks, visit https://CancerMavericks.com. To learn more about OffScrip Health, visit https://OffScrip.com.FEATURED VOICESGil BasheChair Global Health and Purpose, FINN PartnersJohn D. Carpten, Ph.D.President's Cancer Panel (Emeritus)Director, Institute of Translational GenomicsKeck School of Medicine at USCDeanna DarlingtonPresident at Links2EquityKenny KaneYoung Adult Cancer Advocacy PioneerCo-Founder/CEO, Stupid Cancer (Former)Margaret LawsPresident and CEO, Hope LabLisa C. Richardson, MD, MPHDivision Director, Cancer Prevention and Control at The CDCCatharine Young, Ph.D.Assistant Director of Cancer Moonshot Engagement and PolicyThe White HouseSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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The Surprising Role of Patient Advocates in Drug Development

I AM BIO

Play Episode Listen Later Oct 18, 2022 20:55

Patient Advocates do more than raise money—they are active participants in the drug development process. While the ALS Ice Bucket Challenge garnered global attention, lesser-known patient advocates also flex their expertise to drive new treatments and cures. In this episode, we talk with two moms, one who is a patient herself, about their work as partners in research and development, helping bring treatments for two rare diseases to the market. Susan Ruediger, Founder and Chief Mission Officer, CMT Research Foundation Nasha Fitter, CEO, FOXG1 Research Foundation

The Whitehead and Jones Families, Patient Advocates

Ori Spotlight

Play Episode Listen Later Sep 27, 2022 36:25

In episode 21, Ori CEO Jason C. Foster had the honour of being joined by two families, both of whom are strong advocates for increasing the accessibility of CAR-T therapy: Emily, Kari and Tom Whitehead from the Emily Whitehead Foundation, and Lucy and Lewis Jones, parents of Opie Jones. Aged 5, Emily Whitehead was diagnosed with acute lymphoblastic leukemia (ALL). After relapsing twice following conventional treatment, Emily was enrolled on a Phase I clinical trial for CAR-T therapy at the Children's Hospital of Philadelphia where she was the pediatric patient in the world to receive CAR T-cell therapy. We're delighted to say that Emily celebrated 10 years cancer-free this summer! At the tender age of just 5-months old, Opie was diagnosed with infant ALL. Following unsuccessful steroid treatment, and a bone marrow transplant, Opie successfully received CAR-T cell therapy at Great Ormond Street Hospital for Children NHS Foundation Trust. He is now a happy and healthy child, celebrating 1-year cancer-free this year! Jason sat down with both families to discuss their own experiences of CAR-T therapy – exploring the differences between the UK and US healthcare systems and how current challenges limit the accessibility of CAR-T for patients. They also shared their insights into the awareness of CAR-T amongst the healthcare community and how this is rapidly changing with increased advocacy for advanced therapies. Connect with Kari and Tom Whitehead, and the Emily Whitehead Foundation | Connect with Lucy and Lewis Jones

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Talking Prostate Cancer Episode 4 -Patient Advocates, Paul Ferris and his wife Geraldine

The Marie Keating Foundation

Play Episode Listen Later Sep 21, 2022 39:13

Part 2 in our patient advocate series and Episode Four of our “Talking Prostate Cancer” Series. In this episode we have the privilege of speaking with patient advocate Paul Ferris and his wife Geraldine. Former Newcastle United winger Paul Ferris was 51. He had successfully forged a post-football career as a physio, barrister and then a CEO, and his award-winning memoir, The Boy on the Shed, was just about to be published. But then he was diagnosed with prostate cancer. He talks openly about his experience with great humor and profound bravery. Paul's wife Geraldine joins him for some of this episode to discuss the impact of a prostate cancer diagnosis within a relationship. Thank you to Janssen for helping to make this series possible

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Talking Prostate Cancer Episode 3: Patient Advocates - John Wall

The Marie Keating Foundation

Play Episode Listen Later Sep 19, 2022 41:11

Welcome to episode three of the Marie Keating Foundation Talks Cancer podcast. In this episode we have the privilege of speaking with patient advocate John Wall whom many of you will have heard of. John is a man living with advanced metastatic prostate cancer. In this episode he shares his story with incredible honesty discussing what living with cancer is like for him and how it impacts not only his life but also the lives of his loved ones. He talks about his journey, treatments, side effects along with his overall emotions, wellbeing, and the impact on his quality of life.

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Conversations with Patient Advocates Featuring Diane Garcia

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Aug 27, 2022 18:16

Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine In this episode, Rachel talks to Diane Garcia, a patient advocate and victim of levofloxacin toxicity. To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Multiple Myeloma Patient Advocates Winner of GSK Target the Future Think Tank Challenge with Jenny Ahlstrom HealthTree Foundation TRANSCRIPT

Play Episode Listen Later Aug 10, 2022

Jenny Ahlstrom is the Founder and CEO of the HealthTree Fouon and a multiple myeloma patient and patient advocate. The HealthTree Foundation was the winner of the GSK Target the Future Think Tank Challenge and will receive financial support and technical expertise to extend equal access and diversity in multiple myeloma research, clinical trials, services, and education. This effort includes patient navigators who are members of the Black community as well as Spanish speakers who can provide patients access to material translated into Spanish. Jenny explains, "I was diagnosed in 2010 and had some hypotheses about what I wanted in terms of my own therapy and my own types of support that I was looking for. And so, in 2012, we started the foundation, and we have been building up different patient programs for multiple myeloma over that long period of time. We've just gone to look and see what is available already in terms of support services. Then we identified different gaps that we saw as patients ourselves and tried to fill those gaps. And that's been the primary effort of our work, to fill those gaps for patients." "So, we are going to apply this funding to our equity and diversity program. And specifically on this blackmyelomahealth.org website. This website will do outreach to the African American community. Like I said, they are two or three times more likely to develop multiple myeloma. And it's really essential that they learn broadly about what multiple myeloma is." @HealthTree #HealthTreeFoundation #GSK #TargettheFuture #MultipleMyeloma #PatientAdvocate healthtree.org Listen to the podcast here ************ Interview with Dr. Tania Small GSK Podcast and Transcript

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Multiple Myeloma Patient Advocates Winner of GSK Target the Future Think Tank Challenge with Jenny Ahlstrom HealthTree Foundation

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Play Episode Listen Later Aug 10, 2022 16:13

Jenny Ahlstrom is the Founder and CEO of the HealthTree Fouon and a multiple myeloma patient and patient advocate. The HealthTree Foundation was the winner of the GSK Target the Future Think Tank Challenge and will receive financial support and technical expertise to extend equal access and diversity in multiple myeloma research, clinical trials, services, and education. This effort includes patient navigators who are members of the Black community as well as Spanish speakers who can provide patients access to material translated into Spanish. Jenny explains, "I was diagnosed in 2010 and had some hypotheses about what I wanted in terms of my own therapy and my own types of support that I was looking for. And so, in 2012, we started the foundation, and we have been building up different patient programs for multiple myeloma over that long period of time. We've just gone to look and see what is available already in terms of support services. Then we identified different gaps that we saw as patients ourselves and tried to fill those gaps. And that's been the primary effort of our work, to fill those gaps for patients." "So, we are going to apply this funding to our equity and diversity program. And specifically on this blackmyelomahealth.org website. This website will do outreach to the African American community. Like I said, they are two or three times more likely to develop multiple myeloma. And it's really essential that they learn broadly about what multiple myeloma is." @HealthTree #HealthTreeFoundation #GSK #TargettheFuture #MultipleMyeloma #PatientAdvocate healthtree.org Download the transcript here ************ Interview with Dr. Tania Small GSK Podcast and Transcript

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Travelling with a stoma

Stoma Talk

Play Episode Listen Later Jun 27, 2022 47:39

In this episode, Host and Counsellor Helen Farrell talks about travelling with a stoma with guests and Patient Advocates, Charlie Bremmell and Rachel Green, who have both travelled extensively across the UK and the world with Stoma bags.Convatec and Amcare Group do not control what podcast speakers say in their testimonials/statements according to their own experiences.

Conversations with Patient Advocates Featuring Jessica Pothe

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Jun 25, 2022 73:45

"From a patient safety aspect, we can do so much with awareness" says Jessica Pothe, Registered Nurse and graduate student at Northern Illinois University as she discusses her experience with liver toxicity from an adverse drug reaction. Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Special: MS Brain Health Gewinnerin und Ausblick auf neue Projekte

MS-Perspektive - der Multiple Sklerose Podcast mit Nele Handwerker

Play Episode Listen Later Jun 10, 2022 9:56

Ich bin super glücklich und stolz darauf mit meinem MS-Perspektive Podcast den MS Brain Health Award in der Kategorie Patient Advocate gewonnen zu haben. So viel Arbeit und Herzblut steckt in dem Projekt. Bei einem durchschnittlichen Zeitaufwand von 5 Stunden und 140 veröffentlichten Folgen, sind locker 700 Stunden zusammengekommen. Dabei motiviert mich deine Rückmeldung, Fragen und Bitten um Hilfestellung, aber so eine offizielle Auszeichnung ist natürlich was ganz besonderes. Doch wie weiter? Reicht mir das? Nein, ich will noch mehr über die Multiple Sklerose lernen, um Menschen mit MS noch besser auf ihrem weg durchs Leben zu unterstützen und deshalb bewerbe ich mich für den Studiengang Multiple Sklerose Management. Inhaltsverzeichnis Warum will ich nochmal studieren? Mehr Infos zum Studiengang Warum will ich nochmal studieren? Seit März 2020 betreibe ich den MS-Perspektive Podcast, der sich vornehmlich an MS-Patienten, aber auch deren Angehörige und Interessierte richtet. Aus dem anfänglichen Hobby ist eine große Leidenschaft geworden, Menschen mit MS Mut zu machen und ihnen zu zeigen, wie sie selbst aktiv einen positiven Einfluss auf den Verlauf nehmen können. Dabei stütze ich mich vor allem auf die Empfehlungen aus dem MS Brain Health Bericht, aber auch auf andere wissenschaftliche Quellen. Je mehr ich mich ins Thema einarbeite, desto mehr Fragen und Ideen habe ich. Statt nun immer nur punktuell Wissen aufzubauen, möchte ich gern ganzheitlich und fundiert die Krankheit ergründen. Angefangen bei den Grundlagen über die Diagnostik, hin zu einem besseren Verständnis für Studien und die vielfältigen Therapieoptionen. Denn je detaillierter mein Kenntnisstand ist, umso besser kann ich Patienten informieren und dazu beitragen, dass immer mehr Menschen mit MS ein schönes und erfülltes Leben führen und der Wissenstransfer in die Gesellschaft zügiger vonstatten geht. Dafür muss ich jedoch zunächst die komplexen Zusammenhänge vollständig verstehen, um sie dann wieder stark vereinfacht weiterzugeben und eindrückliche Vergleiche aus dem Alltagsleben zu finden, die auch Menschen mit womöglich bereits kognitiven Einschränkungen verstehen. Meine Festanstellung habe ich aufgegeben, um mich in der Selbstständigkeit voll und ganz auf das Thema MS zu konzentrieren. Heutzutage kann jeder mit schönen Bildern und einem sympathischen Auftreten auf den Social Media Kanälen als sogenannter Influencer eine Meinung als Wahrheit verkleiden. Bei MS-Patienten führt das teilweise zum Abbruch der verlaufsmodifizierenden Therapie oder dem Verlassen auf nur mentale Heilversprechen, während die Krankheit weiter voranschreitet. Umso wichtiger ist es, dass Patient Advocates und Ärzte gemeinsam wissenschaftlich basierte Fakten regelmäßig und in verdaulichen Häppchen für MS-Betroffene aufbereiten. Genau das möchte ich mit dem Studium noch besser und effizienter erreichen. Das Studium stellt dabei einen Katalysator dar, der mich schneller zum Ziel bringt und mir gewiss auch dabei hilft ein noch größeres Netzwerk mit Experten aufzubauen, die alle potentielle Interviewgäste für meinen Podcast sind. Falls Du auch interessiert bist oder jemanden kennst, leite gern die nachfolgenden Infos weiter. Es gibt längst noch nicht genug MS-Spezialisten, um eine flächendeckende gute Betreuung zu gewährleisten. Und es sind für diesen Jahrgang noch Teilstipendien zu vergeben. Der nachfolgen Text ist von den Seiten der DIU kopiert. Mehr Infos zum Studiengang Digitaler Infoabend Multiple Sklerose Master - Studierende berichten Datum und Uhrzeit Di. 21. Juni 2022 von 18:00 Uhr – 19:00 Uhr MESZ Veranstaltungsort Online-Event Anmeldung zum Live-Event Über diesen Link Digitaler Infoabend des Studienganges „Multiple Sklerose Management M.Sc.“ – Studierende berichten über ihre Studienerfahrungen Zu diesem Event Dieser 60minütige digitale Infoabend unseres berufsbegleitenden Masters „Multiple Sklerose Management M. Sc.“ richtet sich an alle, die überlegen, am 30.08.2022 in das zweite deutschsprachige Matrikel (oder später) einzusteigen, die aber noch zögern, da sie befürchten, es zeitlich neben einem anstrengenden Full-Time-Job nicht zu schaffen, oder die monatlichen 700 Euro Studiengebühr nicht stemmen können. Dieser Infoabend wird viele offenen Fragen beantworten, denn er wird von den Studierenden des Studienganges selbst gestaltet. Ablauf: 18.00 – 18.30 Uhr Studierende des berufsbegleitenden Masters „Multiple Sklerose Management M. Sc.“ stellen sich vor: beruflicher Hintergrund Motivation für den Studieneinstieg Erfahrungsbericht über Studierbarkeit Welchen Nutzen sie aus dem Programm ziehen 18.30 – 19.00 Uhr Jetzt kommen die Interessierten zu Wort – wir fragen jeden, den wir nicht kennen: welchen beruflichen Hintergrund er hat warum er sich zugeschaltet hat was er von dem Programm erwartet welche Fragen er an die Studierenden oder die Organisatoren hat Wir freuen uns auf Ihre Teilnahme! Achtung, ab 20 Uhr gibt es eine zweite Infoveranstaltung, in der Prof. Ziemssen – der wissenschaftliche Leiter und „Erfinder“ dieses innovativen Pionierstudienganges den Interessierten Rede und Antwort steht. Rückfragen an: franziska.ramisch@di-uni.de, Tel: 0351 40 470 150 Prof. Ziemssen stellt Master Multiple Sklerose vor Datum und Uhrzeit Di. 21. Juni 2022 von 20:00 Uhr – 21:00 Uhr MESZ Veranstaltungsort Online-Event Anmeldung zum Live-Event Über diesen Link Der wissenschaftliche Leiter und „Studiengangserfinder“ Prof. Dr. med. Tjalf Ziemssen berichtet über die Vision hinter dem Pioniermaster Zu diesem Event Diese 60minütige digitale Studiengangsvorstellung richtet sich an alle Interessierten, die überlegen, selbst einzusteigen oder einen Mitarbeiter in den berufsbegleitenden Pioniermaster „Multiple Sklerose Management Master of Science“ zu entsenden. Der wissenschaftliche Leiter und Erdenker des innovativen Studiengangskonzeptes, Prof. Dr. Tjalf Ziemssen, steht allen Interessierten Rede und Antwort. Der Ablauf ist wie folgt: Prof. Dr. med. Tjalf Ziemssen, wissenschaftlicher Leiter des Studienganges und Leiter des Zentrum für Klinische Neurowissenschaften am Universitätsklinikum Dresden sowie Leiter des MS Zentrums Dresden, spricht über: Idee/Konzept hinter dem Studiengang Inhalte des Programmes didaktische Formate Ziele des Programmes Franziska Ramisch – Studiengangsmanagerin – spricht über: Ablauf/Organisation des Masters Teilstipendienprogramm Wir planen viel Zeit, für das Gespräch mit Ihnen und für Ihre Fragen ein! Wir freuen uns auf Ihre Teilnahme! Bis bald und mach das beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisher interviewten MS-Patienten.

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Clarity Patient Advocates

NursePreneurs

Play Episode Listen Later May 12, 2022 29:01

Founder of Clarity Patient Advocates, Claire Thevenot, is a second career nurse with a background in business. But before Claire's business got off the ground she battled breast cancer. As a nurse with breast cancer herself, other cancer patients reached out to Claire for one-on-one help and guidance–this is what gave Claire the idea of starting her own patient advocacy business. Even though Claire began her business in the middle of the pandemic, she was able to find clients by putting work into her online presence. In fact, her first client wasn't a friend or acquaintance, it was an online lead! From helping her clients find billing discounts, translating complicated medical jargon, dealing with communication issues, and more, Claire works with her client's best interests at heart. To learn more about Claire and Clarity Patient Advocates, call (770) 502-6030, email claire@claritypatientadvocates.com, or visit https://www.claritypatientadvocates.com/. Don't Miss These Moments: Why Claire started Clarity Patient Advocates. How Clarity Patient Advocates got its first clients. Patient advocacy business model. What's next for Clarity Patient Advocates?

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Julia Maues and Sheila Johnson, patient advocates

The Health Design Podcast

Play Episode Listen Later May 2, 2022 29:08

Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn't do while pregnant and discovered the cancer had spread to her brain, liver, and bones. After many treatment setbacks, her cancer began to respond to treatment. After adjusting to this new reality, she made it her mission to use this “bonus time” to make an impact in the lives of others dealing with cancer and consequently creating something positive out of a very tragic experience. She has found meaning and purpose in working with patients and researchers to make cancer research more patient-centered, innovative, and inclusive. Julia is a co-founder of GRASP, a program connecting researchers and patient advocates, and elevating patients as a critical voice in the research process as the experts in living with cancer. She's also a member of a patient-led effort to shine a light on dosing for therapies given to metastatic breast cancer patients, therightdose.org. Lastly, Julia is very passionate about using her privilege as a white woman to work towards ending disparities for patients of color, especially Black women with breast cancer. She is a founding member of the #InclusionPledge and has pledged to not participate in advocacy initiatives, conferences, panels, projects, that don't include the perspective of patients of color. At age 43, Sheila Marie Johnson — a retired Air Force Senior Master Sergeant and mother of one was diagnosed with stage IV HER2-positive, hormone receptor-positive breast cancer in December of 2009. Since being diagnosed with metastatic breast cancer, Sheila has undergone many aggressive treatments including a bilateral mastectomy and many rounds of chemotherapy. She is an alumnus of A Fresh Chapter with trips to India and Kenya and is a Young Advocate for Living Beyond Breast Cancer Young Women's Initiative Program. Sheila is a consumer reviewer for the Department of Defense Breast Cancer Research Program and METAvivor, where she reviews proposals for funding and she is a member of the Patient Insight Board for Medidata. Sheila is a facilitator and a Board Member for Breast Cancer Recovery and a 2020 participant in the Escape to Thrive Leadership Conference. She's a Komen Scholar and on the Komen Advocates in Science Steering Committee. Sheila is featured in a Pfizer documentary called A Story Half Told and featured in Breast Cancer Wellness Magazine. Her platform raises awareness about black breast cancer and the health/racial disparities that exist against black women/men in the medical community. She dedicates her life's mission to her mother and father, Dillard and Grace Johnson.

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Conversations with Patient Advocates - Featuring Joan Meléndez

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Apr 30, 2022 32:50

Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine In this episode, Rachel talks to Joan Melendez, President & CEO of Xcelrate UDI. @JoanPMelendez More at https://www.xcelrateudi.com/ To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Patient Advocates on National Boards: Mind the Sausage

Health Hats, the Podcast

Play Episode Listen Later Apr 17, 2022 47:27

Engaging patients differs depending on the role. Those on national Boards lead, strategize, advocate, communicate. Adam Thompson is on the Board of NQF. Listen in. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Adam Thompson 02:38. 1 Patient-caregiver advocates on national Boards of Directors 04:21. 2 Activist, Advocate, Conduit, Leader 06:15. 3 The Ryan White HIV/AIDS Program 09:42. 4 Pulling the curtain back. Feeling our oats. 13:52. 4 The right place to make a difference and re-charge 18:26. 5 Learn, coach, mentor 20:43. 6 Listen, reveal, shout 25:50. 7 Levers of power. Drunk the Kool-Aid. Now what? 30:56. 8 Transparency. The sausage gets made. 34:17. 9 More on conduits 39:39. 10 Engage, dissemination, act 41:02. 10 Is seeking public comment enough? 42:54. 11 Reflection 45:00 11 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Nikki Montgomery, Matthew Pickering, Jan Oldenburg, Danny Sands, Matt Hudson, Dana Gelb Safron, Nakela Cook, Christine Goertz, Kristin Carman, Luc Pelletier, Jan Oldenburg, Sharon Levine, Kara Ayers Links Adam Thompson, LinkedIn National Quality Forum (NQF) PCORI (Patient-Centered Outcomes Research Institute) Dr. David Nash Ryan White program Dolores Dockrey Dr. W Edwards Deming called it profound knowledge. Related podcasts https://health-hats.com/pod110/ https://health-hats.com/pod145/ https://health-hats.com/pod153/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As a nurse, I studied individual health. Then I became a student of organizational health. That led me to management and leadership - all with the mind to get stuff done. Done for people, with people, by people -patients, caregivers, and direct care clinicians. My role changed at each step.

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Conversations with Patient Advocates - Featuring Amy Moser

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Mar 24, 2022 18:38

Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine In this episode, Rachel talks to Amy Moser, Writer & Creator of Mountains and Mustard Seeds blog. More at https://mountainsandmustardseedssite.wordpress.com/ To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Conversations with Patient Advocates - Featuring Maria Gmitro

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Feb 26, 2022 13:49

Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine In this episode, Rachel talks to Maria Gmitro, President & Co-founder of the Breast Implant Safety Alliance @maria_gmitro The mission of BISA Nonprofit is to raise awareness, optimize outcomes and ensure informed consent for patients considering breast implant surgery. BISA Nonprofit empowers patients and works collaboratively with all stakeholders including healthcare providers, regulators and legislators, to support systems of education and accountability that promote patient safety. Visit https://www.breastimplantsafetyalliance.org for more information. Facebook: https://www.facebook.com/breastimplantsafetyalliance/ To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Conversations with Patient Advocates - Featuring Michelle Polacinski

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Jan 29, 2022 32:34

Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine In this episode, Rachel talks to Michelle Polacinski, the Director and Executive Producer of 'Floxed' Documentary @mpolaci Floxed documentary is a documentary about fluoroquinolone toxicity syndrome. More at https://floxeddoc.com/ To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Cancer Doesn't Suck Equally

Real Talk with Rachel: Conversations with Patient Advocates

Play Episode Listen Later Dec 17, 2021 36:35

A cancer diagnosis sucks no matter what — but factors like income, education, racism, geography, housing, and access to health care, known as "social determinants of health," can worsen the burden. When researchers zoom out from individual experiences and survey cancer survivors, they see patterns called social determinants of health. Individual circumstances such as economic stability, physical environment, racial bias, proximity to a provider, or fluency in that provider's language can influence a survivor's health outcome before any cancer treatment begins. In this episode, we share stories of cancer mavericks who rebelled against the foreshadowing of health disparities. 23-year survivor Mary P. Lovato started a support group at her pueblo in New Mexico that expanded to reach American Indian and Alaska Native tribes across the United States. After learning she had breast cancer at 31, Maimah Karmo made it her mission to advocate for young women, Black women, and those with metastatic disease — and to end health disparities in our lifetime. Finally, health disparities researcher Dr. Carmen Guerra shares how the University of Pennsylvania's Abramson Cancer Center nearly doubled the number of Black patients in its clinical trials. For more information about this series, visit https://CancerMavericks.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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Conversations with Patient Advocates - Featuring Arjun Srinivasan, M.D.

Play Episode Listen Later Dec 4, 2021 26:08

Real talk is a virtual series to raise awareness about key patient safety issues and celebrate the work of leaders in the field. Tune in every month as we discuss issues that are rarely mentioned and new ways we should be talking about them. #advocacyandmedicine In this episode, Rachel talks to Arjun Srinivasan, the Associate Director for Healthcare-Associated Prevention Programs, Division of Healthcare Quality Promotion, Centers for Disease Control and Prevention (CDC). Antibiotic Use | CDC https://www.cdc.gov/antibiotic-use/index.html Healthcare Professional Information | Antibiotic Use | CDC https://www.cdc.gov/antibiotic-use/training/materials.html#anchor_1626372118971 Print Materials | Antibiotic Use | CDC https://www.cdc.gov/antibiotic-use/print-materials.html To learn more about the Fourth Cause Campaign, visit https://fourthcause.org/ and find out how you can share your story and help spread awareness. #fourthcause

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Cancer Mavericks Goes to Hollywood

Play Episode Listen Later Nov 12, 2021 39:46

For decades, the portrayal of cancer in movies and television was grim. If a character was diagnosed with cancer, it was a near certainty they'd be dead by the credits. But, like cancer treatment itself, Hollywood evolved, and many storylines about cancer became stories of survival.In this episode, we ask the question, "Who influences us and why?" From musicians to television stars, film producers to televised cancer screenings, when celebrities lend their voices to raising awareness and fundraising, that kind of star power can move mountains. Join us as we hear from voices such as actor Patrick Dempsey, StandUp2Cancer Co-Founders Katie Couric, Pam Williams, the late Laura Ziskin. Also appearing in this episode: Steven Hoffman (Professor of Global Health Law and Political Science at York University in Toronto, Canada,) Dr. Larissa Nekhlyudov (Director of Internal Medicine for Cancer Survivors at the Dana Farber Cancer Institute,) Kami Kosenko (Professor of Communication at North Carolina State University,) and Milton Kent (Former reporter and sports columnist for The Baltimore Sun).For more information about this series, visit https://CancerMavericks.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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S2-E52 - Predicting Long-Term Outcomes Using MR Elastography

Play Episode Listen Later Oct 28, 2021 58:18

Professors Alina Allen and Ian Rowe join the Surfers to discuss our ability to predict long-term outcomes using MR Elastography. The conversation flows around Mayo Clinic's recent Hepatology publication, "MRE for prediction of long term progression and outcome in chronic liver disease. The ability to predict long-term outcomes using MR Elastography (MRE) and other non-invasive testing methods will be pivotal to drug development and, separately, to diagnosing, staging and monitoring patients. Alina presents highlights from Mayo's recent CGH paper and lends her own significant experience in this area. As we learned last year, Ian leads or is involved in large population-based studies in Leeds, with considerable focus on how NITs can support patient treatment most successfully and cost effectively. This is a topic where all five panelists can contribute from unique perspectives reflecting their own experiences.Highlights include:8:53 - Alina Allen begins to discuss recent Mayo Clinic publication "MRE for Prediction of Long-Term Progression and Outcome in Chronic Liver Disease."10:22 - Source of data for this retrospective analysis11:33 - Discussion of results starts by discussing accuracy in pre-cirrhotic patients13:05 - Key point: biomarkers can tell us more because they are continuous numbers, not two or three level models14:08 - Stephen Harrison asks for specific numbers that listeners can use as rules of thumb for prediction15:08 - Alina -- a 1 point increase in kPa...more than doubles the risk of cirrhosis for pre-cirrhotic patients, increases risk of decompensation by 22% in compensated cirrhotics18:53 - Ian Rowe describes results as "great because it speaks to the development of more personal risk stratification for patients."19:53 - Alina expands on the benefit for clinicians who need to treat and manage individual patients more intelligently and cost effectively22:08 - Ian describes a study he and his team in Leeds are conducting that addresses similar issues. 24:09 - Alina raises question of how to monitor sub-F2 patients in hepatology and even primary care clinics24:59 - Louise Campbell: same metrics will allow us to individualize terminal care and palliation sooner for patients whose livers will fail. Leads to a more in-depth discussion with Ian on what should happen in the UK today vs. what is happening. 27:39 - Alina describes palliative care in the US as "an area that needs a lot more work" and raises some of the challenges30:13 - Stephen asks whether we can reverse engineer or analyze these results for FibroScan. Ian reports that his data suggests this is a more complicated challenge. 31:41 - Stephen asks about implications for endpoint designation in pre-approval outcomes studies, then suggests an alternate design with endpoints based on MRE33:10 - Alina agrees with idea, referring to Scott Friedman's point in S2 E51 about the genesis of NAFLD activity scores and fibrosis levels34:45 - Alina: "I think this connection between what we currently use to what we need to move in the future is starting to get made" and paints a picture for what trials might look like.36:15 - Stephen asks whether we know enough to propose a Subpart H endpoint that is not biopsy driven. He and Alina agree we are close to having one key endpoint proven: a 20% decreasae in MRE correlates to a 1 level decrease in fibrosis.

The Young Adult Cancer Movement

health wellness patients advocates disease treatments advocacy superhero rare call of duty gi ibs ibd gastro patient advocates

Play Episode Listen Later Oct 8, 2021 42:17

Facing a diagnosis of cancer at any age is horrible. But for young adults, it's just plain different. Not better. Not worse. Different. Those diagnosed between the ages of 15 and 39 are on a planet all their own, often left to fend for themselves as lost voices sandwiched between pediatrics and adult cancer. The consequences of living with, through, and, ideally, beyond cancer carries with it a whole host of unique long-term issues, issues that had fallen under the radar and gone ignored by the system for far too long.In this episode, we talk to a new generation of cancer mavericks like Tamika Felder, Heidi Adams, Doug Ulman, and Lindsay Nohr-Beck, who revived a dying national conversation on cancer survivorship in the earliest days of the Internet. They created edgy websites, forced doctors to listen by creating fertility preservation guidelines, and fought to bring the invisible and underserved voice of the young adult cancer community into the national public spotlight.For more information about this series, visit https://CancerMavericks.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

spotify health mental health internet podcasts wellness medicine movement cancer healthcare facing documentary cdc genetics young adults breast cancer nih cancer survivors oncology clinical trials american cancer society lance armstrong genomics health equity cancer treatment chemotherapy cancer patients katie couric colon cancer cancer care western medicine brain cancer precision medicine asco national cancer institute cancer prevention personalized medicine livestrong survivorship hematology patient advocacy cancer therapies march on washington gilda radner documentary series radiation therapy nci cancer survivorship cure cancer bone marrow transplant stem cell transplant cancer warrior cancer support community pediatric oncology centers for disease control david nathan stupid cancer documentary podcast cancer control sickcare matthew zachary cancer advocacy patient advocates leukemia and lymphoma society doug ulman nccs laura ziskin nancy brinker aya cancer mary lasker barbara hoffman steve lickteig

Superhero Patient Advocates: Volume 1

Gastro Girl

Play Episode Listen Later Sep 21, 2021 11:20

Host Jacqueline Gaulin recaps some of the inspirational stories of patients who have turned their rare GI diagnoses into positive acts of advocacy for better care and available information on their specific conditions. We also highlight some of the GI clinicians who are going above and beyond the call of duty to make sure patients are getting the care and information they deserve. Join us for this special edition episode to learn about other episodes you don't want to miss.

I'm Alive? HELP!

Play Episode Listen Later Sep 10, 2021 42:04

In just over 20 years, the number of cancer survivors in the United States has doubled to 17 million survivors, each confronting their new (ab)normal lives. From chemo brain to PTSD, medical debt to workplace discrimination, this episode follows survivors along with their unique—and often difficult—paths post-treatment. In this episode, we hear from some of the godmothers of the cancer survivorship movement like Dr. Patricia Ganz and Barbara Hoffman and “everyday mavericks” who are forging ahead into life after cancer. For more information about this series, visit https://CancerMavericks.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

united states spotify health mental health podcasts wellness medicine cancer healthcare alive ptsd documentary cdc genetics breast cancer nih cancer survivors oncology clinical trials american cancer society lance armstrong genomics health equity cancer treatment chemotherapy cancer patients katie couric colon cancer cancer care western medicine brain cancer precision medicine asco national cancer institute cancer prevention personalized medicine livestrong survivorship hematology patient advocacy cancer therapies march on washington gilda radner documentary series radiation therapy nci cancer survivorship cure cancer bone marrow transplant stem cell transplant cancer warrior cancer support community pediatric oncology centers for disease control david nathan stupid cancer documentary podcast cancer control sickcare matthew zachary cancer advocacy patient advocates leukemia and lymphoma society doug ulman nccs laura ziskin nancy brinker aya cancer mary lasker barbara hoffman steve lickteig

S2-E44.4 - COVID-19 and Fatty Liver - What Impact Will the Delta Variant Have On Clinical Trials?

Play Episode Listen Later Sep 5, 2021 11:53

Donna Cryer joins the Surfers to discuss how the COVID-19 Delta Variant is affecting Fatty Liver Disease in 2021. This conversation focuses on the current and potential impact of the Delta and future variants on clinical trial performance. Seventeen months ago, Surfing the NASH Tsunami began as a podcast focused on how COVID-19 and the pandemic would affect NASH clinical trials. Some 90 original episodes later, we return to this subject in this conversation. Roger Green asks questions about how COVID-19 has affected clinical trial conduct in the US and other major markets and the rest of the Surfers provide answers about the current and future benefits from what we have learned managing trials in this pandemic. Keep listening to hear some potentially sobering comments on the effect Delta or a possible more potent future variant might have on patient recruitment and assignment. At the end, the four panelists all discuss one point listeners should take away from this conversation.

The March on Washington

The Oncology Nursing Podcast

Play Episode Listen Later Aug 5, 2021 40:50

Advocacy can take many forms in the cancer community — from advocating for yourself or a loved one to receive the best possible treatment to calling your Congressperson or testifying on Capitol Hill to demand increased access to care. This episode explores different ways cancer mavericks have elevated survivors' needs and improved their lives, including the pioneering patient navigation model created by Dr. Harold Freeman at Harlem Hospital, the story of Ellen Stovall's fearless and collaborative approach to policy, shaped around a shared agenda to represent the needs of all cancer survivors, and the landmark 1998 March on Washington called Coming Together To Conquer Cancer. For more information about this series, visit https://CancerMavericks.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

spotify health mental health washington podcasts wellness medicine cancer healthcare documentary cdc advocacy capitol hill genetics breast cancer nih cancer survivors oncology clinical trials american cancer society lance armstrong genomics health equity cancer treatment chemotherapy cancer patients katie couric colon cancer cancer care western medicine brain cancer precision medicine asco national cancer institute cancer prevention personalized medicine livestrong survivorship patient advocacy hematology cancer therapies march on washington gilda radner documentary series radiation therapy nci cancer survivorship cure cancer bone marrow transplant stem cell transplant congressperson cancer warrior cancer support community pediatric oncology centers for disease control david nathan stupid cancer documentary podcast cancer control sickcare matthew zachary cancer advocacy harlem hospital patient advocates leukemia and lymphoma society doug ulman nccs laura ziskin nancy brinker aya cancer mary lasker barbara hoffman steve lickteig

Episode 165: Safely Administer and Prescribe Opioids for Cancer-Related Pain

Play Episode Listen Later Jul 23, 2021 34:38

ONS member Judy Paice, PhD, RN, director of the cancer pain program in the division of hematology-oncology and research professor of medicine at Northwestern University's Feinberg School of Medicine in Chicago, IL, and member of the Chicago ONS Chapter, joins Stephanie Jardine, BSN, RN, oncology clinical specialist at ONS, to discuss prescribing and using opioids to manage cancer pain. Judy is presenting on the topic during the second annual ONS BridgeTM in September 2021. Click the link in the episode notes to learn more about the virtual conference. Music Credit: "Fireflies and Stardust" by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 Earn 0.5 contact hours of nursing continuing professional development (NCPD) by listening to the full recording and completing an evaluation at myoutcomes.ons.org by July 30, 2023. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center's Commission on Accreditation. Episode Notes Check out these resources from today's episode: Complete this evaluation for free NCPD. Learn more about the ONS Bridge virtual conference. Oncology Nursing Podcast Episode 3: Opioids, Addiction, and Complex Care Oncology Nursing Podcast Episode 130: Manage Cancer-Related Constipation With ONS Guidelines™ ONS Voice article: Crush Constipation With This Old-Time Recipe ONS Voice article: How to Prevent Opioid Misuse While Effectively Managing Cancer Pain ONS Voice article: Nurses Have a Pivotal Role as Patient Advocates in the Opioid Crisis ONS Voice article: Opioids Can Be Used Safely for Cancer-Related Pain Clinical Journal of Oncology Nursing article: Opioid Misuse Risk: Implementing Screening Protocols in an Ambulatory Oncology Clinic ONS position statement on pain management ONS Guidelines™ for Opioid-Induced and Non–Opioid-Related Cancer Constipation ONS Pain Management Learning Library ONS webinar: Every Nurse's Role in Management of Pain in an Opioid Crisis ONS webinar: Opioid Pain Management in Serious Illness American Cancer Society information on opioids for cancer pain ELNEC resources National Cancer Institute cancer pain PDQ (patient version) National Cancer Institute cancer pain PDQ (provider version) To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org.

S7E9: A conversation with patient advocates

The Pituitary World News Podcast

Play Episode Listen Later Jul 19, 2021 33:51

We recently sat down with members of the acromegaly community to discuss their treatment journeys and the lessons they learned along the way, including how they advocate for themselves and how their experiences can help others do the same. We heard about their journey from the initial diagnosis to treatments, and life with acromegaly during the COVID-19 pandemic. You don't want to miss this engaging conversation in our latest podcast sponsored by Chiasma.

covid-19 patients advocates patient advocates chiasma

The Alumni Association

Play Episode Listen Later Jul 1, 2021 38:45

By the 1980s, cancer was no longer a death sentence. But the question of what surviving actually meant was unanswered. Cancer survivors had to navigate issues around employment, relationships, and the emotional and physical side effects of treatment in a world that largely didn't know what to do with them. (and they were still called “victims.”) In 1985, a young doctor named Fitzhugh Mullan wrote an essay called “Seasons of Survival” about his own experience with cancer. His piece helped popularize the term “cancer survivor” and resonated with a growing number of survivors, who were starting to form support groups around the country. Among them was Catherine Logan Carrillo, the founder of People Living Through Cancer in New Mexico, who asked Fitzhugh to help her convene an “alumni association” for cancer survivors. And they did, during one monumental weekend in Albuquerque. For more information about this series, visit https://CancerMavericks.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

spotify health mental health podcasts wellness medicine cancer healthcare documentary survival new mexico cdc genetics breast cancer albuquerque nih cancer survivors oncology clinical trials american cancer society lance armstrong genomics health equity cancer treatment chemotherapy cancer patients katie couric colon cancer cancer care western medicine brain cancer precision medicine asco national cancer institute cancer prevention personalized medicine livestrong survivorship hematology patient advocacy alumni association cancer therapies march on washington gilda radner documentary series radiation therapy nci cancer survivorship cure cancer bone marrow transplant fitzhugh stem cell transplant cancer warrior cancer support community pediatric oncology centers for disease control david nathan stupid cancer documentary podcast cancer control sickcare matthew zachary cancer advocacy patient advocates leukemia and lymphoma society doug ulman nccs laura ziskin nancy brinker aya cancer mary lasker barbara hoffman steve lickteig

Diabetes Quality Programme 04 - Patient advocacy and transition

RCPCH podcasts

Play Episode Listen Later Jun 29, 2021 41:07

We speak to Jo Kitchen and Amanda Grayson, Patient Advocates at the Calderdale and Huddersfield Trust, about their unique role in supporting young people with diabetes, and their Quality Improvement project on transition. Contributors: Jo Kitchen Amanda Grayson Patient advocates, Diabetes Team, Calderdale and Huddersfield Trust Hosts: Andrea Srur - Programme Manager, Diabetes QI team, RCPCH Matt Oultram - Quality Improvement Project Manager, CYP Diabetes QI Collaborative, RCPCH

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Building Better Patient Advocates Through Authentic Partnerships with Sabrina Hanna, Founder & CIO of the Cancer Collaborative

Healthcare Goes Digital

Play Episode Listen Later Jun 16, 2021 56:36

Sabrina Hanna, Founder & CIO of the Cancer Collaborative, discusses precision medicine, innovation in oncology, how to build better patient advocates, and the current gaps when it comes to patient-centricity in Pharma.Schedule a meeting with Natalie Yeadon: https://www.meetwithnatalie.comNatalie Yeadon LinkedIn: https://www.linkedin.com/in/natalieyeadon/Impetus Digital Website: https://www.impetusdigital.com/Impetus Digital LinkedIn: https://www.linkedin.com/company/impetus-digital/Impetus Digital Twitter: https://twitter.com/ImpetusadboardsImpetus YouTube: https://www.youtube.com/ImpetushealthcareSabrina Hanna: https://www.linkedin.com/in/sabrina-hanna-451bbb15/The Cancer Collaborative: https://roomc.co/

Lasker's War

Hope With Answers: Living With Lung Cancer

Play Episode Listen Later Jun 4, 2021 41:33

Mary Lasker used to say that more money was spent on advertising campaigns for gum than was spent on cancer research. She'd seen the effects of that almost non-existent budget first hand: she watched people close to her die from cancer, including her advertising exec husband. She was outraged by the lack of money and research devoted to ending the disease. But with her own funds and influence, Mary Lasker rallied the public and lawmakers to take notice, ultimately leading to The National Cancer Act of 1971. This "War on Cancer" brought millions of dollars, but also harsh truths: there was no simple cure for cancer, and the remedies of modern science to control the disease took a devastating toll on patients. Rose Kushner was one of those patients. She questioned the treatments and surgeries that had become the status quo for medical experts. Her pushback helped start a massive change in the patient-doctor relationship as well as in cancer treatment. In Episode 1, we learn how Mary Lasker and Rose Kushner became two of the most important health policy advocates of the 20th century, putting cancer—and cancer patients—front and center. For more information about this series, visit https://CancerMavericks.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

spotify health mental health podcasts war wellness medicine cancer healthcare documentary cdc genetics breast cancer nih cancer survivors oncology clinical trials american cancer society lance armstrong genomics health equity cancer treatment chemotherapy cancer patients katie couric colon cancer cancer care western medicine brain cancer precision medicine asco national cancer institute cancer prevention personalized medicine livestrong survivorship hematology patient advocacy cancer therapies march on washington gilda radner documentary series radiation therapy nci cancer survivorship cure cancer bone marrow transplant lasker stem cell transplant cancer warrior cancer support community pediatric oncology centers for disease control david nathan stupid cancer documentary podcast cancer control sickcare matthew zachary cancer advocacy patient advocates leukemia and lymphoma society nccs doug ulman laura ziskin nancy brinker aya cancer mary lasker barbara hoffman steve lickteig

Finding Your Lung Cancer Tribe: Tips from Patient Advocates

Play Episode Listen Later May 20, 2021 21:19

Living with lung cancer is never easy, but finding your lung cancer tribe with other patient advocates can help newly-diagnosed patients harness the power of their own voice in treatment. Hear from LCFA's group of patient advocates about how they got connected through patient groups that helped them learn how to navigate the lung cancer journey. You'll also hear from lung cancer specialist Dr. Raymond Osarogiagbon of Baptist Cancer Center in Memphis, who shares his hopes for the future of lung cancer treatment. Guests: Dr. Raymond Osarogiagbon of Baptist Cancer Center in Memphis, Tennessee LCFA Speakers Bureau members Terri Conneran, Linnea Olson, Ivy Elkins, Yovana Portillo, AJ Patel, Montessa Lee, Gina Hollenbeck, and Frank McKenna Show Notes | Transcription Patients Voices Can Change the Shape of Research In lung cancer research, the patient’s voice matters. Patient advocacy can shape research and can impart to the research community the sense of urgency patients deal with every day. “Patients may not realize just how powerful their voice can be in their own lung cancer treatment plan or in helping others through their journey.” - Kim Norris There has been a real change in lung cancer research that's just happened over the last 10 years or so. When Kim Norris, LCFA’s co-founder and President, first got into lung cancer patient advocacy years ago, the treatments available and the survival rates were not encouraging. Now, there's so many reasons for newly diagnosed patients to be hopeful. Although 5, 10, even 15 years doesn't sound like a long time, in lung cancer research, it's an eternity. More new treatments have been approved in the past five years than have been approved in the last 20 combined. And new discoveries are continually happening at such a rapid pace that is sometimes hard to keep up with them all. Thoracic oncologist Dr. Raymond Osarogiagbon is encouraged by the power of the patient's voice to explain what it means to be living with lung cancer. “We are making a lot of progress in lung cancer, and that is true. And that progress has come very quickly. It seems like literally every few weeks, every few months, there's a new groundbreaking discovery.” LCFA’s Speakers Bureau Discuss Finding Their Tribes At this year’s annual get-together (held virtually) the LCFA’s Speakers Bureau talked about the power of finding your tribe, finding lung cancer patients who share the same experience, and sometimes even the same biomarker. This shared experience often helps newly diagnosed patients find their own voice to advocate for the best treatment plan. As more people are living longer, healthier lives with lung cancer, many find meaning in advocating for others, helping newly diagnosed patients know the right test to get, and the right questions to ask to be part of their own treatment plans. How Patients and Their Tribes Use Their Voices Some turn their advocacy into activism, lobbying for increased lung cancer funding, and raising awareness of lung cancer as the number one cancer killer. Terri Conneran is very actively using her voice by serving on lung cancer advocacy boards, working on events, supporting various foundations, and maintaining a voice for lung cancer patients online. “Those of us in the lung cancer community are living with this silent disease growing within us and we need to give it a voice. If I can help one person, my goal is met.” - Terri Conneran Ivy Elkins has completed Advocate Training through the American Association of Cancer Research. She then created and moderates two Facebook groups – close to 500 members strong – where they share information regarding clinical trials and treatments. Their primary goal is to work as a group to get the attention of lung cancer researchers. However, simply finding a support group is an excellent first step. The Importance of Finding Your Lung Cancer Tribe Members of the LCFA Speakers Bureau share what it means to be living with lung cancer. Some advocates use their anger, frustration, and sadness as motivation for their advocacy. Frank McKenna thinks it's important that lung cancer patients stay involved in things like helping other people. “Even if we don't personally reach out and need that help, I think so many people rely on our experiences and they reach out to us. It's just, I think it's been very rewarding to me when somebody says you've been a godsend because you've given me this information, I can't get it anywhere else.” Voicing the Pros and Cons of Using “Dr. Google” Kim Norris agrees that finding and connecting with other lung cancer patients is much easier today. Patient groups can help them find the right questions to ask and the right test to have done. “Thanks, of course, to a quick Google search. But it helps to know what you’re searching for. Searches like lung cancer survivor stories or KRAS patient groups will generally lead to useful and actionable information that can help patients connect to others going through the same experience, as advocate Terri Conneran learned.” Terri Conneran’s doctor told her to stay off of Google because she's going to see nothing but bad news. Connecting with a local lung cancer group, she learned more about individual biomarkers like EGFR and ALK. This knowledge led to her questioning her doctor regarding biomarkers and the discovery that her cancer has the KRAS biomarker. Speaker Ivy Elkins did a Google search, even though her doctor warned her against that. But she looked for blogs and other people experiencing similar life situations. Yovana Portilla also did a Google search looking for “lung cancer support group” to find other people that have been through this before me for advice along her lung cancer journey. Other Ways To Advocate for Lung Cancer Research Not all lung cancer patients can devote unlimited time to reading journal articles, understanding clinical trial design, and communicating effectively with scientists and physicians. However, there are some effective ways to advocate right from your home. Build a network of support with family members, friends, community members, and fellow advocates living with lung cancer. Find an online community. There are more specific communities advocating for specific lung cancer biomarkers. These are some of the biomarker communities our Speakers Bureau participate in: EGFR Resisters ALK Fusion Facebook Group ALK Positive The ROS1ders KRASkickers There has never been a more important time for the U.S. to invest in medical research. Thanks to bipartisan support in Congress, the National Institutes of Health (NIH) has received significant funding increases for the last six years. Monitor important legislation for lung cancer research. On the National Cancer Institute website there are summaries of legislation proposed affecting federal health policy. This page is updated as relevant legislation is introduced. Then contact your Congressional representatives. Ask them to make sustained funding for lung cancer research a national priority starting with funding important lung cancer research policies currently up for legislative approval. Watch lung cancer patient and advocate Gina Hollenbeck discuss the importance of turning up the volume of the patient’s voice. Other Legislative Resources NIH Office of Legislative Policy and Analysis (OLPA) - this office is the liaison between NIH and Congress National Conference of State Legislatures - Cancer-Specific State Legislation - where you can find information on cancer-specific state legislation National Conference of State Legislatures - Health-Related State Legislation - where you can find information on health-related state legislation Kaiser Family Foundation - this foundation provides state-specific information related to cancer and health Finding your lung cancer tribe can be your key to Getting the best information on your specific lung cancer and the best treatment options Connecting with a support group of people who know EXACTLY what you’re going through Making the lung cancer journey of someone coming behind you easier

Introducing: The Cancer Mavericks