بهترین پادکست های Amplifying Patient Voices (2024)

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Amplifying Patient Voices: Wes Michael on Rare Disease Advocacy 23:54

16h ago23:54

23:54

In this episode of P4A Let's Talk Rare, hosts Georgie and Owen Bryant from Partners For Access are joined by Wes Michael, founder and president of Rare Patient Voice LLC. Wes shares the organization’s journey from its beginnings as a community project for hemophilia patients to a global platform that connects rare disease patients and caregivers wi…

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Wes Michael: Dedicated to Amplifying the Rare Patient Voice 44:05

16d ago44:05

44:05

We often hear the stories of patients and caregivers. Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down with us to share the results of a caregiver survey they conducted in late 2023. The findings were interesting and affirmed much of what parents raising …

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Navigating Open Enrollment Season: An Overview of Insurance Options and Medicare Changes 27:31

1d ago27:31

27:31

PHA’s Advocacy and Treatment Access program manager, Jaeger Spratt, guest-hosts this episode for Open Enrollment Season. They invited Kim Everett, a pulmonary arterial hypertension and lupus patient, to talk about her experiences with insurance over the years and share how current Medicare changes have improved her prescription experience. Guest Am…

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A 'giant shell game?' The egregious gimmicks of corporate health care 16:01

4d ago16:01

16:01

This time on Code WACK! Rebate aggregators? Group purchasing? Vertical integration? How exactly do Pharmacy Benefit Managers, or PBMs, operate to maximize profit? And how are everyday Americans suffering from these practices? To find out, we spoke to Dr. Ed Weisbart, national board secretary of Physicians for a National Health Program, a single-pay…

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'Incestuous exploitation?' PBMs and corporate healthcare consolidation 15:01

11d ago15:01

15:01

This time on Code WACK! We’re taking another look at Pharmacy Benefit Managers or PBMs. Why were PBMs started and how did they morph to become one of the most powerful entities in health care? Why have they caught the attention of the Federal Trade Commission? How are they a threat to consumers? To find out, we spoke to Dr. Ed Weisbart, the nationa…

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A Closer Look at Pulmonary Hypertension and Interstitial Lung Disease, Part 2 20:49

16d ago20:49

20:49

Guests: Jeff Spiwak, a patient with pulmonary hypertension and interstitial lung disease; and Ahmad Abu Homoud, MD. In this episode of PH Insights, Spiwak, a pulmonary hypertension and interstitial lung disease patient, joins Hamoud to discuss the impact of PH-ILD on daily life and the importance of exercise or physical activity to manage the condi…

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Jacked up premiums & chaos? Why your health care is on the line this November 17:01

18d ago17:01

17:01

This time on Code WACK! What’s at stake in health care with the upcoming federal election? Would Donald Trump really try to repeal the Affordable Care Act - again? Would Kamala Harris continue fighting to rein in the skyrocketing cost of medicine? What will be the fate of Biden-era policies like enhanced tax credits limiting the cost of health insu…

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Patient-centered health care? The fight to change our disempowering system 15:00

25d ago15:00

15:00

This time on Code WACK! The fight for affordable, accessible health care in the U.S. has gone on for decades. Who’s in the fight to win solutions that improve health care for everyone? What policies are they working on? Today we’re featuring the Washington DC-based Families USA, a leading national nonpartisan voice for healthcare consumers. We welc…

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A Closer Look at Pulmonary Hypertension and Interstitial Lung Disease, Part 1 26:53

30d ago26:53

26:53

Guest: Ahmad Abu Homoud, MD, medical director, Pulmonary Hypertension Center, Jersey Shore University Medical Center; and associate program director, Department of Pulmonary and Critical Care, Shore Pulmonary Physician Associates. In this episode of PH Insights, Homoud discusses the connection between pulmonary hypertension and interstitial lung di…

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Coming Together for a Cure - Blake Benton Part 2 24:00

30d ago24:00

24:00

In Part 1, we heard about the bold and courageous approach that Ryan Benton's family took to treat his Duchenne Muscular Dystrophy. After seeing the success of the stem cell therapy, Blake and Ryan Benton felt very deeply that they needed to inform and educate others about this approach. From the grass roots of a local rock concert grew Coming Toge…

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What’s being done to stop pharmaceutical pirates? 13:01

1M ago13:01

13:01

This time on Code WACK! What are lawmakers and the Federal Trade Commission doing about Pharmacy Benefit Managers and their undue influence over drug prices and access? Who is watching out for consumers when the pharmaceutical industry pursues self-serving arrangements? And what’s the impact on independent pharmacies and their patients? To find out…

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How pharmaceutical profiteers are screwing us over 12:01

1M ago12:01

12:01

This time on Code WACK! So you might have heard the term pharmacy benefit managers – or PBMs – in the news. But what are they? How did these middlemen get to be so powerful? How are they causing drug prices to skyrocket? And what’s the Federal Trade Commission doing about it? To find out, we recently interviewed Hannah Garden-Monheit, the FTC’s dir…

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A Bold and Courageous Approach - Coming Together For A Cure 29:03

1M ago29:03

29:03

Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy. About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an experimental stem cell therapy. And it worked. Ryan was able to live until he was 37 years old with little degeneration caused by his DMD. He died in 2023 o…

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Privatization ‘on steroids?’ What health care could look like under Trump 17:01

2M ago17:01

17:01

This time on Code WACK! As the United States faces an election possibly unlike any other in our history, we wonder about the future of our healthcare system. What changes might we expect under President Trump, or President Harris? What would a new administration mean for single-payer efforts in states like California and Oregon? And what about Medi…

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Your needs vs the 'financial incentives of your insurance plan?' 18:01

2M ago18:01

18:01

This time on Code WACK! What’s been happening on the healthcare front since California Senate Bill 770, which paves the way for a single-payer healthcare system, was passed last year? What’s the process and the timeline? What are the necessary next steps to winning single payer in the Golden State and why is it so important to achieving healthcare …

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Filling in the Blanks: Understanding Pulmonary Hypertension, Part 2 9:49

2M ago9:49

9:49

Guests: Jenny Yang, MD, and Monica Penaranda, PHA Board of Trustees member and PH patient. In this episode, we hear from Monica Penaranda, who has been living with pulmonary arterial hypertension for 27 years. Diagnosed while pregnant, Penaranda shares her diagnosis journey and discusses the importance of perseverance, proper medical care and findi…

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Need out-of-state coverage? Get ready to jump through hoops & pay through the nose 16:01

2M ago16:01

16:01

This time on Code WACK! How far did one man have to go to get the health insurance he needed to cover a specialized surgery in another state? Despite jumping through many hoops to even qualify to buy the coverage he needed, why did he still end up paying tens of thousands of dollars in out of pocket costs? How much would you be willing to pay for t…

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Find Your Real Friends in Your Rare Disease Community 44:30

2M ago44:30

44:30

Type 1 Diabetes (T1D) is not considered a rare disease according to the numbers. The T1D community is quite large and includes people of all ages, races, geography, and conditions. However, many of our guests use the technology developed for T1D patients. In fact, Brittany’s daughter Everleigh relies on the Dexcom G7 to manage her glucose levels. I…

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Filling in the Blanks: Understanding Pulmonary Hypertension, Part 1 33:11

2M ago33:11

33:11

Guest: Jenny Yang, MD; assistant professor of medicine, University of California San Diego Pulmonary hypertension is a complex and underdiagnosed condition that affects the blood vessels in the lungs. Blood vessels can become stiff, damaged or narrow, causing the right side of the heart to work harder to pump blood through. In this inaugural episod…

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One man's fight for freedom and choice in health care 18:01

2M ago18:01

18:01

This time on Code WACK! Imagine having to fight with your HMO insurer about compensating your surgeon who doesn't belong to your provider network, but happens to be a specialist in a particular procedure that you want because it has fewer side effects. Could you afford to cough up a few thousand dollars to pay the surgeon while hassling with your H…

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The corporate 'war chest' that's spending big to control your health care 18:01

2M ago18:01

18:01

This time on Code WACK! Why did California’s latest single payer bill fail and what can we do about it? How can the public learn the truth about how much they could save with unified financing when deep-pocketed corporations keep lobbying legislators against it? What will it take to make Medicare for All a reality once and for all? To find out, we …

1
This Is Who These Rare Kiddos Are 33:48

3M ago33:48

33:48

Beyond the Diagnosis is more than a traveling art exhibit. It is a movement to humanize the children who happen to have a rare disease. So much of the work around rare diseases is logical, scientific, and medical. It can be a world without feeling. Using art and artists to introduce and celebrate these children is much more personal and evocative. …

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Penny wise, pound foolish? How our long-term care policies fail us 17:01

3M ago17:01

17:01

This time on Code WACK! Why is long term care, including in-home health care, in crisis? How are skyrocketing costs affecting patients? How come two-thirds of people in California who are getting in-home health care get it from family members who are often unpaid? Would universal long term care - or a single-payer system with unified financing - he…

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The patient journey | Sickle cell disease 31:56

3M ago31:56

31:56

In this episode, Tyler Piazza, BD Director at FIECON, hosts an insightful interview with Kevin Wake, CMR, CHW, M.S., a sickle cell disease patient advocacy leader and a health outcomes industry expert. Kevin, who was diagnosed with sickle cell disease at nine months old, is now the president of URIEL E OWENS SICKLE CELL DISEASE ASSOCIATION OF THE M…

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Should health insurers have the final say about your care? 17:01

3M ago17:01

17:01

This time on Code WACK! How do insurance companies put up barriers to addiction treatments? How does this affect treatment programs and their clients? And how would it be if we had Medicare for All? To find out, we spoke to Arlene Stanich-Prince, executive director of Ohlhoff Recovery Programs in San Francisco, one of the longest standing treatment…

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Taking Control: The Key to Coping with Dr David Bullis, Therapist, Author 1:06:42

3M ago1:06:42

1:06:42

Takeaways: Coping is an active process that requires setting goals and taking control over the choices we face. Balance is crucial in coping, and it involves managing stress coming into our lives and releasing it through physical exercise and relaxation breathing. Sorting worries into three boxes (things we have control over, things we will have co…

1
What have we learned in the last 6 months? 36:35

3M ago36:35

36:35

We discuss the joys, challenges, and surprises of raising a child with a rare disease every episode. In this conversation, we reflect on what each of us has learned through these discussions, through life “outside the podcast,” and through other people we have met along the way. Without any set plan we wander through resilience, learning not to rea…

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Is addiction a choice? New perspectives on substance use disorder 17:00

3M ago17:00

17:00

This time on Code WACK! What are some of the most common misconceptions about people who are addicted to substances like opioids? What medicines are revolutionizing the way people are being treated today – and how accessible are they? To find out, we spoke to Arlene Stanich-Prince, executive director of Ohlhoff Recovery Programs in San Francisco, o…

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Impact of Mergers, Acquisitions, and Patent Expirations on Job Cuts in Pharma and Biotech: Insights from Aurelija Luko and Darren Callanan 27:15

3M ago27:15

27:15

Welcome to this month's episode of the P4A Let’s Talk Rare podcast by Partners4Acess. Today, Georgie and Owen are joined by their colleagues Aurelija Luko, the CFO, and Darren Callanan, the Global Digital Lead at Partners4Access. Join them as they discuss the recent job cuts in the pharma and biotech industry and the reasons behind them. Aurelia ex…

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The ‘silent, slow apocalypse’ of corporate health insurance 18:01

3M ago18:01

18:01

This time on Code WACK! What is the true cost of the American health insurance system? What toll is it taking on both patients and providers? And what do we need instead? To find out, we recently interviewed Dr. Linda Peeno, a physician, ethicist and health insurance industry whistleblower who testified before Congress and who has spent nearly four…

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The deadly calculation of our for-profit healthcare system 18:01

4M ago18:01

18:01

This time on Code WACK! How did a single mom in Kentucky, in the 1970s, become a physician, then a health insurance medical reviewer and eventually a whistleblower? To find out, we recently interviewed Dr. Linda Peeno, a physician and ethicist who has spent nearly four decades working to protect patients from harm and death by corporate healthcare …

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Myles Was Here To Teach Us 31:39

4M ago31:39

31:39

Losing a child is heartbreaking. Ashley Genelin lost her son Myles when he was just 3 years old. He was diagnosed with cardiofasciocutaneous syndrome or CFC. They did their best to keep him at home as long as possible, even when caring for Myles was like running an ICU. Make-A-Wish allowed them to take this mini-ICU on the road so that Myles could …

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The patient journey | Metastatic breast cancer 41:38

4M ago41:38

41:38

In this episode Karl Freemyer, BD director at FIECON, is speaking with Emma Chaffin about her experience living with the metastatic breast cancer as a biopharmaceutical executive. Emma is a resilient breast cancer survivor who was diagnosed with stage 4 breast cancer five years ago at the age of 41. Facing a daunting prognosis and a treatment plan …

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Does silence still equal death? For too many Americans, the answer is yes. 20:01

4M ago20:01

20:01

This time on Code WACK! In honor of PRIDE Month, we’re revisiting a popular episode about the HIV/AIDS crisis of the 1980s and 1990s. What were the health policy failures that spurred so many Americans to militant activism? How did the LGBTQ+ community win the struggle to get government funding to address the deadly virus? Fortunately today, with a…

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