Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by patient advocate Eileen Davidson who lives with rheumatoid arthritis.

Eileen discusses her patient perspectives poster about building a support group as a secure haven for people living with arthritis. Eileen describes how connecting with peers can transform the patient journey.

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

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Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by occupational therapist and patient advocate Cheryl Crow, who lives with rheumatoid arthritis.

Cheryl discusses her involvement with ACR, shares her key takeaways from this year's conference, and offers a sneak peek into her two upcoming talks centered around podcasting and helping her peers with rheumatic disease navigate the workplace.

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this special episode, Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by patient advocate Dana Guglielmo who lives with rheumatoid arthritis.

Dana shares about her patient perspectives poster where she uses data to manage her health information. She encourages patients to make their own "Dana's Dashboard" and find what works for them to take control over their health information.

Episode Note

You can download Dana's dashboard template via the link below: https://docs.google.com/spreadsheets/u/0/d/1RPCM-4KZ_tXb7uZGxNirZ_l5aiXwZyLjKAZ1CIhpU2M/htmlview

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

The Health Advocates are joined by rheumatologist Dr. Grace Wright to learn about polymylagia rheumatica (PMR). Dr. Wright shares about the diagnosis process of PMR and how we must do better on shortening the time to diagnosis and getting patients treated.  She also discusses common symptoms and telltale signs of PMR interfering in everyday life.

“I think the most important thing always in rheumatology is to remember the [patient] story is the most critical,” says Dr. Grace Wright.

This episode was made possible with support from Sanofi.

Among the highlights in this episode:

01:02: Dr. Wright outlines her background in rheumatology, and her involvement with the Association of Women in Rheumatology, emphasizing the importance of education and equity in managing rheumatic diseases

01:42: Dr. Wright describes PMR's symptoms, particularly affecting shoulders and hips, and clarifies that while PMR can be effectively managed, it is not necessarily curable

03:25: Dr. Wright elaborates on the typical progression from initial symptoms to diagnosis, highlighting the importance of blood tests in identifying PMR

04:44: Dr. Wright discusses the challenges in the diagnosis and treatment of PMR, stressing the often lengthy delay before patients receive appropriate care from a rheumatologist

05:45: Steven Newmark, Director of Policy at GHLF and Dr. Wright discuss the prevalence of PMR compared to other arthritis types

07:07: Dr. Wright offers advice for patients seeking help for PMR and emphasizes the importance of being attentive to changes in patient’s daily functioning and the need for timely consultation with a rheumatologist

09:26: Dr. Wright discusses resources available for patients coping with PMR and the importance of equity in health care

11:55: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

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The Health Advocates discuss the latest news on the change in insurance coverage of COVID-19 treatments and a recent approval of a meningococcal vaccine. For the main topic, The Health Advocates dive into everything you need to know about open enrollment for health insurance. They cover common insurance terms, the difference in plans, what enrollment numbers look like, and what you should look out for when choosing a plan.

“Many people are surprised to find out that even within the same 'metal tier,' the range of services and network coverage can differ significantly. That's why it's crucial to read the plan details, not just the price tag,” says Steven Newmark, Director of Policy at GHLF.

Among the highlights in this episode:

00:40: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, explains that the coverage for COVID treatments, including Paxlovid, will transition from government-based to commercial plans, highlighting uncertainties around patient copay amounts

01:07: Zoe emphasizes that uninsured individuals, as well as those with Medicare or Medicaid, will continue to receive Paxlovid at no cost until the end of 2024

01:49: GHLF remains steadfast in promoting accurate, evidence-based insights regarding both vaccines and vaccine research. We have gathered all of our vaccine resources in just one place at https://ghlf.org/vaccine-resources/

02:07: GHLF released a new podcast series called Informed Immunity, which tackles the most pressing topics in the realm of vaccines ­– from debunking myths to advocating for public health. You can find it here: https://ghlf.org/informed-immunity/

04:52: Steven and Zoe discuss the significance of health insurance, especially for those with chronic diseases

05:50: Zoe clarifies terms like premiums, deductible, copay, and coinsurance to help listeners better understand their insurance plans

06:46: Zoe emphasizes the need to recheck whether providers, hospitals, and medications are still covered under existing health care plans

07:46: Steven mentions a change where coverage under a parent's plan is now extended through the calendar year in which an individual turns 26

08:28: Steven and Zoe delve into the different tiers of Affordable Care Act plans and discuss the subsidies available based on income

09:35: Zoe shares a personal anecdote about her journey with health insurance, underscoring the complexities and learning curves faced by many

11:16: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

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The Health Advocates are joined by Nika Beamon who lives with IgG4-related disease (IgG-RD), a group of fibroinflammatory conditions that can impact various tissues, often leading to tumor-like growth or organ dysfunction. Nika shares her 17-year journey to an IgG4-RD diagnosis, including how she advocated for herself. She offers valuable tips for fellow chronic illness patients, highlighting the unique considerations people with autoimmune diseases have in everyday life.
 
“So there's so many things that do alter your life. But at the end of the day, you got one life, so you got to live it, and so I just choose to live it regardless of the fact that this is how it's built,” says Nika.

Among the highlights in this episode:

00:50: Nika gives an in-depth account of her health struggles, which began in college. She discusses her IgG4 symptoms like constant fatigue, joint pain, and spontaneous fevers, which baffled doctors for years

04:25: Nika emphasizes the importance of self-advocacy and the need for patients to have all their medical records organized

05:20: After years of suffering, a top rheumatologist identifies Nika’s condition, marking a significant turning point in her journey

05:35: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, asks about Nika's reaction to finally receiving a diagnosis, underscoring the emotional impact of living undiagnosed for such a long period

07:46: Nika delves into her decision to write about her health journey and shares her personal experience of opening up to coworkers, revealing the challenges of living with a hidden illness

09:14: Nika discusses the complexities of diagnosing autoimmune diseases and the significance of patients being proactive, keeping detailed records, and ensuring doctors are listening to their concerns

13:01: Zoe emphasizes the challenges of managing a chronic illness, including the constant advocacy required, the need for continuous learning, and the difficulties in communicating with doctors

14:00: Nika discusses her experiences during the pandemic, especially the disparity between how she and others perceived the impact of illnesses like COVID

18:34: Nika emphasizes the importance of advocacy, surrounding oneself with a supportive community, and recognizing the disease as just a part of oneself

20:02: What our hosts learned from this episode

This episode was made possible with support from Horizon Therapeutics.

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

Our hosts discuss the latest news on the Novavax COVID vaccine approval, a lawsuit benefitting patients using copay assistance, and what cases the Supreme Court will hear this month. For the main topic, The Health Advocates congratulate Katalin Karikó and Drew Weissman, who were awarded the Novel Prize for their work on the COVID vaccine, and take a look at the pathway to discovering mRNA technology.

“They [Katalin Karikó and Drew Weissman] get a cash award… but even more than that, they have the satisfaction of knowing that their work has saved millions of lives already and will continue to save millions more in the decades to come,” says Steven Newmark, Director of Policy at GHLF.

Among the highlights in this episode:

00:36: Our hosts discuss the FDA's recent approval of the Novavax COVID vaccine, which is now available for individuals 12 and older and is targeting the Omicron subvariant

01:15: Steven highlights a significant court decision vital for patients who rely on copay assistance

03:33: Steven discusses a Supreme Court case called Acheson Hotels versus Laufer, and the right to bring lawsuits under the Americans with Disabilities Act (ADA)

06:19: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, emphasizes the need for businesses to be upfront about their accommodations for individuals with disabilities, highlighting the broader societal implications of the Supreme Court case [Acheson Hotels versus Laufer]

07:14: Steven touches on a potential Supreme Court case related to the mifepristone battle, underscoring the complexities of the legal landscape

08:35: Zoe and Steven celebrate the awarding of the Nobel Prize in Physiology or Medicine to Katalin Karikó and Drew Weissman for their groundbreaking work on mRNA vaccines

09:13: Our hosts discuss the history of RNA and its significance, laying the groundwork for understanding the importance of mRNA (Messenger RNA) technology

12:08: Zoe and Steven discuss the role of COVID-19 in amplifying the urgency of mRNA vaccine development

13:06: Zoe emphasizes the role of advocacy in pushing forward critical research, suggesting that vocal support can be a driving force behind scientific advancements

13:37 - Our hosts commend the transformative impact of mRNA technology on the world of vaccines, especially given its applications beyond COVID-19

14:52: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

The Health Advocates are joined by rheumatology practice manager Julie Baak who talks about how insurance practices like utilization management delay treatments for patients, how she and her practice advocate for patients, and how she makes noise about these issues within the rheumatology community.

“You know, the right medicine for the right patient is really the driving focus of our practice. And I don't have a magic wand. I advocate one patient at a time, and I'm pretty successful at it,” says Julie.

Among the highlights in this episode:

00:53: Julie explains her role in rheumatology practice management. She shares how her office is able to help so many patients, and the burdens they face due to insurance companies and pharmacy benefit managers.

01:48: Julie delves into the complexities of how insurance companies determine which drugs to cover, and the challenges of non-medical switches

04:02: Steven inquires about the challenges of keeping up with yearly formulary changes

04:52: Zoe questions how the team communicates complex health insurance issues to patients, especially concerning non-medical switching or prior authorization delays

06:25: Julie discusses the scarcity of independent rheumatology offices, and the value of advocacy

07:46: Steven asks about advice for patients who may not have access to an advocate like Julie

09:49: Julie emphasizes that everyone is a patient and shares her driving focus of getting the right medicine for the right patient

10:58: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

Our hosts discuss the latest news on a federal health care transparency bill and what you need to know this Asthma Peak Week. For the main topic, The Health Advocates break down all that was discussed during the recent Advisory Committee for Immunization Practices (ACIP) meeting about the fall COVID shots. They talk about the recent vaccine approvals, COVID hospitalization rates, long COVID, and vaccine effectiveness.

“We learned [during the ACIP meeting] that with hospitalizations, rates across all groups have been rising since July 2023… The most prevalent underlying condition amongst adults ages 18 and older for those who are hospitalized for COVID included cardiovascular disease, neurologic disorders, diabetes, obesity, asthma, and chronic lung disease,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.

Among the highlights in this episode:

00:38: Steven Newmark, Director of Policy at GHLF, shares that the vote for the PBM Transparency Act, which aims to increase transparency in PBMs to potentially lower health care costs, has been delayed

01:07: Zoe emphasizes the importance of incremental changes in advocacy

02:03: Ahead of Asthma Peak Week, Zoe provides tips for keeping asthma under control, emphasizing prevention, communication, and the importance of staying updated on vaccinations

03:06: Zoe shares insights from a recent ACIP meeting on the COVID vaccines, including remarks from the CDC director, Dr. Mandy Cohen, who commented on the current state of the pandemic and the tools available to combat various viruses

04:26: Our hosts discuss the renaming of the COVID vaccine from "booster shot" to "23-24 mRNA COVID-19 vaccine"

05:01: Steven elaborates on the specific features of the new COVID vaccine, who it's recommended for, and the shift from the previously used vaccine

06:17: The health advocates discuss the current state of the COVID pandemic, with a focus on hospitalizations, long COVID, and vaccine effectiveness

06:33: Zoe delves into the data presented during the vaccine meeting, particularly concerning hospitalizations among people with chronic conditions

08:16: Zoe provides details on the prevalence and impact of long COVID on various age groups, noting the significant limitations it imposes on daily life for many

10:41: Steven shares resources on where listeners can find a COVID vaccine near them, and reminds them to check insurance coverage when getting the vaccine

To find a COVID vaccine near you, you can visit www.vaccines.gov  

11:00: Our hosts wrap up by addressing options for uninsured listeners, pointing them toward specific programs and resources

11:32: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

The Health Advocates are joined by Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF. Together, they take a close look at the provisions in the Inflation Reduction Act (IRA), how these impacts health care costs, and what it means for people living with chronic illness.

“We have to really look at it through all sides, and really have to make sure that patients are staying involved in understanding the impact of this provision [drug pricing negotiation], because this provision will have an impact on patients,” says Corey.

Among the highlights in this episode:

01:09: Corey provides background on the IRA detailing its main provisions and how it aims to impact patient access and affordability, especially for Medicare beneficiaries

02:21: Corey sheds light on the benefits patients have already started seeing, especially regarding insulin pricing and the ripple effect this has had in the commercial market

04:38: Corey explains the novel situation of the U.S. government having the ability to negotiate drug prices and the potential impacts of such a change on the health care industry

05:18: Steven Newmark, Director of Policy at GHLF, asks for clarity on why Medicare, being a significant payer, was historically unable to negotiate drug prices

07:48: Corey delves deeper into the intricate process of implementing the drug pricing negotiation provisions of the IRA, highlighting the current lack of transparency in the upcoming steps and emphasizing the need for stakeholder involvement in the process

09:03: Steven summarizes the ripple effect of Medicare decisions on the private health insurance space, pondering how a change in Medicare drug prices might affect the broader market

11:26: Corey explains that while the immediate impacts of the IRA might be beneficial, the long-term implications could affect drug development timelines and patient accessibility to new treatments

13:48: Join GHLF’s advocacy efforts and sign up for the 50-State Network to get involved

More information via this link: https://www.50statenetwork.org/become-a-50-state-network-advocate/

15:40: Zoe Rothblatt, Associate Director, Community Outreach at GHLF, underscores the tension between accessibility and cost-saving measures, particularly when it comes to patients with chronic diseases versus the general public

16:21: Steven offers a perspective on the IRA from the lens of patient advocacy, drawing a parallel between societal contributions and the health care world, explaining how everyone benefits from a society where patients can access vital medications

19:13: Corey encourages listeners, especially patients, to share their experiences and concerns regarding the IRA, as this feedback is vital for accurate representation and advocacy

20:41: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: [email protected]

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected]

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.