We’re reporting live from the American College of Rheumatology (ACR) Convergence 2024 in Washington, D.C., a yearly gathering for rheumatology experts worldwide. Join us as we talk to rheumatologists, researchers, and patients to discover how these advancements in research are shaping the future of health and advocacy.

Among the highlights in this episode:

00:43: Dr. Sharon Dowell discusses her background as a rheumatologist and her favorite ACR session, "Thieves Market," which emphasizes the diversity of rheumatology cases

01:27: Dr. Dowell explains how events like ACR enhance advocacy by providing opportunities for networking and sharing global perspectives on patient care

02:24: Dr. Swamy Venuturupalli shares his excitement about lupus-specific sessions, especially on CAR T cell therapy, and how these advancements could help his patients

03:36: Dr. Venuturupalli emphasizes the importance of ACR as a global platform for learning and collaboration in rheumatology research

04:25: Cristina Montoya, a registered dietitian and patient advocate, shares her experience presenting on unrecognized symptoms of rheumatic diseases

05:29: Cristina highlights her work with the OMERACT Children’s Disease Working Group and her contributions to developing new outcomes for clinical trials

06:44: Dr. Shilpa Venkatachalam reflects on the patient-centered focus at ACR 2024 and the collaborative advancements in biologics and treatment modalities

09:02: Dr. Venkatachalam explains the value of patient-centered research in making invisible diseases visible through patient-reported outcomes and clinical data

12:06: Dr. Venkatachalam discusses how tools like PatientSpot empower patients to advocate for themselves by providing a full picture of their lived experiences

For more information about PatientSpot, visit: https://patientspot.org/

13:14: Zoe wraps up the episode, emphasizing the significance of research presented at ACR in improving patient outcomes and advocacy efforts

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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

See omnystudio.com/listener for privacy information.

In this episode, we’re joined by Ron Howrigon, President of Fulcrum Strategies, who specializes in guiding doctors through the complexities of insurance policies. Ron shares his unique journey from working on the insurance side to advocating for physicians and patients against unfair industry practices. We dive into the challenges of prior authorization, insurance denials, and their impact on physician burnout. Ron sheds light on the incentives driving insurance companies and the reasons behind coverage battles, while offering thoughtful solutions to improve the system for patients and health care providers alike.

Among the highlights in this episode:

01:17: Ron explains his career shift from working for major insurance companies to founding Fulcrum Strategies, motivated by his personal experience during his child's birth

03:15: Ron describes the main focus of his work: helping physicians negotiate fair reimbursement terms with insurance companies and address issues like prior authorization

06:04: Ron highlights common problems physicians face, including retroactive denials and patients being unable to afford out-of-pocket costs despite having insurance

08:14: Ron discusses the motivation behind insurance companies’ tactics, explaining the profit-driven nature of the industry and how it conflicts with patient care needs

09:49: The conversation shifts to the challenges of managing chronic disease within the insurance system, with Ron explaining the adverse selection and cost issues insurers face

11:01: Zoe Rothblatt, Director of Community Outreach at GHLF, shares her personal experience with biologic medication costs, highlighting the financial burden on chronically ill patients

13:46: Ron offers his perspective on potential solutions, including the possibility of universal health care and reforming the insurance industry's approach to prior authorization

15:29: The discussion addresses the need for accountability in the insurance industry, with Ron suggesting that medical directors be held to the same standards as prescribing doctors

18:49: Ron offers a message of resilience and hope, encouraging patients and physicians to continue advocating for policy change and better care

19:57: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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 post-election episode of The Health Advocates, Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation, provides an update on the potential impacts of Donald Trump’s second non-consecutive presidential term on health care. With changes expected in the Senate and possible shifts in the House, Steven breaks down how Trump’s administration, along with controversial figures like Robert F. Kennedy Jr., may influence public health agencies, Medicaid, Medicare, and the Affordable Care Act. Tune in for a quick, informative recap of the election's health care implications.

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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 Halloween episode of The Health Advocates, we’re diving into some spine-chilling experiences in the health care system. Our guests open up about their scariest moments — from misdiagnoses and panic attacks in MRI machines to doctors dismissing their pain. But it’s not all fright! They share how these tough experiences helped them become stronger self-advocates, turning fear into resilience.

Among the highlights in this episode:

01:34: Shelley Fritz, Patient-Centered Engagement and Insights Manager at GHLF, describes her experience on Easter weekend in 2017, when she started experiencing severe chest pain and difficulty breathing

06:47: Shelley shares that she was diagnosed with bilateral pulmonary embolisms (blood clots in both lungs) — a potentially fatal condition and recalls how a nurse, unaware of her diagnosis, carelessly lifted her, worsening her pain. Shelley had to advocate for different pain management, eventually receiving proper treatment after several hours

11:26: Sarah Shaw, Associate Director of Diversity, Equity, Inclusion & Community Outreach at GHLF, shares how her doctor’s frustration with her lack of progress led to a shocking comment, labeling her a “problem patient.” Sarah felt blamed for not responding to treatments but decided to find a new doctor who would advocate for her and work collaboratively on her treatment plan

15:23: Sarah reflects on her positive experience with her new doctor, who reassures her that “the treatment failed you, not the other way around,” a supportive approach that transformed her journey, emphasizing the importance of finding a doctor who listens and treats patients as partners in their care

18:53: Zoe Rothblatt, Director of Community Outreach at GHLF, shares her own story of feeling dismissed by a dermatologist who kept her waiting for over two hours, only to rush through the appointment and offer unsolicited advice on her autoimmune treatment, making her feel uncomfortable and disregarded

21:59: Zoe reflects on the lessons learned: the importance of trusting her instincts, finding providers who respect her time, and ensuring she feels comfortable speaking up during appointments

26:44: JP Summers, Senior Patient Advocate and Community Outreach Manager at GHLF, describes the panic attack she experienced while in the MRI machine due to severe claustrophobia. This led her to advocate for an open MRI despite initial insurance denials, highlighting how crucial it is to speak up for her needs in challenging health care situations

32:54: Zoe thanks JP for sharing her story, acknowledging the anxiety diagnostic tests can trigger for chronic illness patients, and underscores the importance of knowing there are often alternatives available

36:19: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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

See omnystudio.com/listener for privacy information.

In this episode, we discuss the 2024-2025 fall vaccine lineup, covering everything you need to know to stay protected this season. We start with updates on the latest COVID and flu vaccines, and Zoe shares her personal experience getting these shots. We then dive into the recent approval of self-administered FluMist, exploring how it compares to the traditional injectable flu vaccine in terms of effectiveness and convenience. Plus, we provide a brief update on RSV.

Among the highlights in this episode:

00:36: Steven Newmark, Chief of Policy at GHLF, discusses the CDC’s updated COVID vaccine recommendations, emphasizing that everyone aged six months and older should receive the 2024-2025 COVID-19 vaccine

00:48: Zoe Rothblatt, Director of Community Outreach at GHLF, addresses common questions from the immunocompromised community, highlighting the CDC's guidance on additional COVID doses and the importance of consulting with health care providers

01:13: Steven and Zoe explain the distinction between updated vaccines and boosters, noting that updated vaccines target new strains and are expected to be revised annually

02:24: Steven shares data from 2023, pointing out that most people hospitalized for COVID had not received the updated vaccine, underlining its importance

02:46: Zoe highlights the concern of long COVID and how getting vaccinated can reduce the risk of developing this condition

03:16: Zoe shares her personal experience of getting both the flu and COVID shots together, and gives tips on how to coordinate vaccination plans with a doctor

04:23: Steven introduces the FDA approval of FluMist for self or caregiver administration, explaining how it provides an alternative to the traditional flu shot

06:02: Zoe explains that FluMist is not recommended for the immunocompromised

07:10: Steven discusses the benefits of having options like FluMist, stating that it's good to have more ways to get vaccinated

08:09: Zoe shares insights on managing treatments around vaccine schedules, emphasizing the importance of personalizing health care decisions

09:39: Zoe provides information on the RSV vaccine, mentioning its availability for older adults, pregnant women, and the benefits for newborns

10:09: Steven reminds listeners about the availability of free rapid COVID tests from the federal government, encouraging people to have them on hand during the respiratory virus season

11:04: Zoe announces the launch of the second season of GHLF’s Informed Immunity podcast, which covers topics around vaccines, immunization equity, and debunking myths

To listen to all the Informed Immunity episodes, visit: https://ghlf.org/informed-immunity/ or search for the series on your favorite podcast platform

11:28: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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 World Sight Day episode, Steven and Zoe are joined by Caroline Casey, President of the International Agency for the Prevention of Blindness (IAPB), and Seth Ginsberg, President of the Global Healthy Living Foundation (GHLF). Together, they explore the critical importance of eye health, especially for those living with chronic diseases like thyroid eye disease and diabetes. Caroline and Seth discuss global initiatives, innovative campaigns like "Love Your Eyes," and how advocating for better eye health can transform lives.

Tune in as we raise awareness for blindness prevention, highlight the need for regular eye checkups, and share valuable insights on how chronic conditions can impact vision.

Among the highlights in this episode:

01:17: Caroline Casey introduces herself, sharing her story as an advocate for eye health and her role as President of IAPB

01:51: Seth Ginsberg gives a brief overview of GHLF, explaining how the organization supports patients with chronic illnesses, including those facing vision impairment due to chronic conditions

02:37: Caroline explains the mission of World Sight Day, highlighting the global attention it brings to blindness, eye health, and vision impairment

03:45: Seth discusses the connection between chronic diseases and eye health, emphasizing how conditions like thyroid disorders and diabetes can affect vision

05:47: Caroline describes IAPB's initiatives, including the "Love Your Eyes" campaign and efforts to provide eye care to children and workers globally

09:51: Seth highlights GHLF’s work on thyroid eye disease, detailing GHLF’s resource hub in Australia and how they aim to empower patients to manage their condition

To find all of GHLF’s resources on thyroid eye disease, visit: https://ghlf.org.au/thyroideyedisease/

12:44: Caroline underscores the importance of regular eye checkups, especially for those using devices that strain the eyes, and encourages listeners to take action on World Sight Day

15:40: Seth shares how advocacy empowers patients, explaining the importance of speaking up about symptoms and advocating for better treatments and health care access

18:47: Caroline explains the challenges in making eye health a global priority, highlighting the importance of integrating eye care into primary health care systems

21:32: Seth offers final thoughts, urging listeners to take care of their vision and seek regular eye checkups, especially if they have chronic health conditions

23:38: Caroline and Seth encourage listeners to make a pledge to prioritize eye health, reiterating the importance of advocacy and self-care for both eye health and chronic conditions

24:12: What our hosts learned from this episode

To learn more about IAPB, visit: https://www.iapb.org/

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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

See omnystudio.com/listener for privacy information.

In this episode, we are joined by Estela Mata, President and CEO of Looms for Lupus, a non-profit dedicated to raising awareness and providing support for those living with lupus, and other chronic conditions. Estela shares her personal and family journey with lupus and the profound impact of advocacy. She highlights the importance of community, the need for increased awareness, and the power of sharing personal stories, especially within the Hispanic community. Estela’s message of hope and resilience is a reminder of the strength found in community and the critical role of advocacy in chronic illness management.

Among the highlights in this episode:

01:13: Estela shares the personal story of her sister Juana’s battle with lupus, including the challenges of diagnosis and the importance of persistence in seeking medical care

02:46: Zoe Rothblatt, Director of Community Outreach at GHLF, and Estela, discuss the critical role of advocacy in chronic illness, with Estela explaining how she and her family became advocates to support others facing similar struggles

04:01: Estela reflects on the powerful connections formed through advocacy, emphasizing how community support can provide strength and hope

05:56: Estela recounts the origins of Looms for Lupus, explaining how it was founded by her and her sisters to provide support, education, and advocacy for those affected by lupus and other chronic conditions

07:07: Estela discusses her involvement in clinical trials, highlighting the importance of being informed and the role of clinical trials in offering hope for new treatment options

08:52: Zoe and Estela discuss the therapeutic value of creative activities like loom knitting and crocheting, particularly as coping mechanisms during challenging times

10:44: Estela talks about expanding Looms for Lupus to support individuals with other chronic conditions, emphasizing the importance of overall awareness and education

11:35: Estela shares insights on the health disparities faced by the Hispanic community and the critical need for culturally competent care and early diagnosis

13:10: Estela discusses the impact of advocacy within the Hispanic community and highlights the importance of using one's voice to demand equitable health care and reduce stigma

16:59: Estela concludes by encouraging listeners to get involved in advocacy, sharing her sister's empowering slogan: “Never give in, never give up, never let go. Just keep fighting”

20:10: What our hosts learned from this episode

If you want to subscribe to our email newsletter to learn more about clinical trials, especially for lupus patients, please send your contact information via this form: https://bit.ly/LupusHelpCenter

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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

See omnystudio.com/listener for privacy information.

In this episode, we’re joined by Jessica Buckley, President and CEO of the Lung Health Foundation (LHF), and Dr. Dawn Bowdish, scientist and the Executive Director of the Firestone Institute for Respiratory Health and member of the Board of Directors of the LHF. We talk about how asthma, despite being common, can be complicated to diagnose and that many are living with uncontrolled asthma. Jessica and Dawn also share recent survey results of asthma patients’ experience, and how patients can set health goals with an asthma action plan and advocate for better air quality.

Among the highlights in this episode:

01:32: Dawn shares her journey to becoming a leading researcher in respiratory health and her role at the Firestone Institute

01:58: Jessica talks about the mission and impact of the Lung Health Foundation in advocating for lung health across Canada

02:33: Jessica shares her personal motivation driven by family experiences with lung diseases, emphasizing the widespread need for lung health awareness

03:06: Dawn discusses how personal encounters at a gala event deeply influenced her dedication to lung health advocacy

05:34: Dawn explains the medical basics of asthma, its triggers, and the importance of proper diagnosis and management

08:09: Jessica addresses common issues faced by individuals living with asthma, particularly the lack of proper asthma action plans

10:36: Dawn discusses how external factors like air quality and climate change are increasingly important for asthma management

14:20: Jessica explains how the Lung Health Foundation educates the public and advocates for policies to improve lung health

17:21: Jessica discusses a new campaign aimed at enhancing public appreciation for lung health and proactive care

19:14: Dawn and Jessica offer insights into the advancements in asthma treatment and the importance of an effective asthma action plan

21:42: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

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 podcasts@ghlf.org

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

See omnystudio.com/listener for privacy information.