In this episode, we’re joined by gastroenterologist Dr. Brad Pasternak who talks about how his personal experience with ulcerative colitis inspired him to become a pediatric gastroenterologist. Dr. Pasternak realized he needed to advocate for policies that increase access to care after seeing his patients face denied treatments by insurance. He shares the tremendous effect that harmful policies have on the medical community, in delaying treatment for patients and getting in the way of shared decision-making. Finally, he leaves us with hope, discussing the advancements in treatment for inflammatory bowel disease.

Among the highlights in this episode:

01:23: Dr. Pasternak shares his personal journey into gastroenterology influenced by his own diagnosis with ulcerative colitis and his love for working with children

04:08: Dr. Pasternak discusses his recent shift towards advocacy, driven by the challenges posed by insurance policies and his desire to fight for better patient care

06:05: Dr. Pasternak recounts his advocacy efforts, including a significant meeting that led to a change in a health plan’s approval process for biologic treatments

10:27: Steven Newmark, Chief of Policy at GHLF, and Dr. Pasternak delve into the complexities of health policy advocacy, the slow process of legislative change, and the interactions with policymakers

12:14: Dr. Pasternak explains the burdensome process of prior authorizations and appeals in medical practice, highlighting its impact on medical professionals and patients

16:41: Dr. Pasternak outlines the advancements in patient outcomes over the years due to newer, more effective therapies that aim to heal rather than just treat symptoms

18:46: Dr. Pasternak encourages medical providers and patients to persist in advocacy and fight against inefficient and unjust medical policies

21:10: Dr. Pasternak mentions his local advocacy work, which often yields quicker results than federal efforts, emphasizing the importance of physician involvement in legislative processes

23:12: 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 honor of Lupus Awareness Month and Lupus Day of Action in New York City, we’re joined by New York City Council Member Shahana Hanif. Council Member Hanif shares about her life as a lupus patient and how her condition informs her work as a member of the city council. She underscores the importance of accessibility within New York City and the idea of creating infrastructure to help patients with chronic conditions live and age in peace.

Among the highlights in this episode:

00:41: Steven Newmark, Chief of Policy at GHLF, acknowledges Earth Day and discusses the contributions of plant life to medicine, highlighting how nature aids in treating various diseases

01:26: Zoe Rothblatt, Director of Community Outreach at GHLF, discusses the topic of biologic therapies and their potential use in treating COVID-19 by targeting the immune response

02:46: Council Member Hanif discusses her personal journey with lupus, starting with her symptoms at age 17 and her eventual diagnosis during an emergency room visit, which significantly impacted her life

05:45: Council Member Hanif reflects on her initial awareness of lupus through popular culture and the lack of broader discussions on chronic illnesses in her community, which motivated her to advocate openly about her condition

07:57: Steven asks Council Member Hanif about the transition from emergency care to regular treatment and how she navigated the health care system to find appropriate care despite initial challenges

11:33: Council Member Hanif explains how her personal experiences with lupus and health care barriers influenced her political career and advocacy efforts, especially concerning city infrastructure and public services to accommodate people with disabilities

14:57: Steven emphasizes the need for policies that support aging and accessibility in city environments

15:46: Council Member Hanif shares her ongoing commitment to lupus advocacy, including her participation in national lobby days and her efforts to ensure city legislation considers the needs of people with chronic illnesses

17:43: 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.

We’re joined by Shonta Chambers, who serves as the Executive Vice President-Health Equity Initiatives and Community Engagement for the Patient Advocate Foundation (PAF). Shonta explains how social drivers impact one’s health, including things such as housing and economic status. We dive into the case work she does with PAF to combat these challenges and connect patients to resources. She also shares her personal journey of being a caregiver.

Among the highlights in this episode:

01:00: Shonta explains her role at the Patient Advocate Foundation, detailing her personal and professional experience with health advocacy

01:35: Shonta describes the foundation's work in addressing the non-clinical, social, and financial drivers of health inequities, emphasizing the broad support they offer from insurance issues to basic living needs

02:40: Zoe Rothblatt, Director of Community Outreach at GHLF, discusses the significant impact of social and economic factors on health and probes further into patient experiences

03:04: Shonta highlights the importance of addressing various non-clinical factors that affect health outcomes and shares how the foundation helps patients navigate these challenges

07:34: Zoe reflects on the exhaustive nature of being a patient and highlights PAF's role in alleviating some of that burden

09:20: Shonta shares personal challenges as a caregiver and the systemic issues she faces even with her professional background

16:38: Zoe asks what can be done to help improve conditions for patients, prompting a discussion on policy advocacy and community support

19:47: Shonta offers advice to caregivers on maintaining their well-being and the importance of self-care

23:30: What our hosts learned from this episode

For more information about the Patient Advocate Foundation visit: https://www.patientadvocate.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.

The Health Advocates are joined by singer, songwriter, actress, and activist Cyndi Lauper and chef and restauranteur Michelle Bernstein to talk about their journey with psoriasis and psoriatic arthritis. Recently, the two of them have joined forces to bridge the worlds of music and cuisine to deliver a powerful message of hope and empowerment for patients living with psoriatic disease. Here, they share about their personal journeys with diagnosis, the importance of connecting with other patients, and why they are spreading awareness.

For more information on the resources mentioned by Cyndi Lauper and Michelle Bernstein, you can visit: ThePSConnection.com

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.

Zoe and special co-host Adam Kegley, Associate Director of Global Partnerships at GHLF, are joined by San Diego-based gastroenterologist Carlton Thomas, MD, to learn all about LGBTQ+ health and inflammatory bowel disease (IBD). Dr. Carlton shares how not enough people are talking about sexual health and IBD, how people can have more open and honest conversations with their doctors, and the challenges faced in the LGBTQ+ community when it comes to accessing health care.

Among the highlights in this episode:

01:00: Dr. Carlton shares his background as a gastroenterologist specialized in IBD and his presence on social media as a voice for queer health, highlighting his unique approach to discussing often taboo subjects

02:54: Adam Kegley, Associate Director of Global Partnerships at GHLF, and Dr. Carlton discuss the lack of conversation around sexual health and IBD in health care settings, emphasizing the importance of open communication between patients and providers, especially in the LGBTQ+ community

04:16: Adam explains the LGBTQ+ IBD Experiences Survey, a GHLF initiative to understand the specific health care experiences of LGBTQ+ individuals with IBD, aiming to improve inclusivity and access to care

If you are an LGBTQ+ person living with IBD, make your voice heard and take the survey at https://bit.ly/lgbtq-ibd

05:38: Dr. Carlton discusses the challenges faced by LGBTQ+ individuals with IBD, including the difficulty in discussing sexual health with health care providers, particularly in less accepting environments, and the impact of provider bias and misinformation

07:15: Adam notes the surprisingly low percentage of gastroenterologists who routinely inquire about sexual health in IBD patients

10:07: Zoe Rothblatt, Director of Community Outreach at GHLF, reflects on her own experience with Crohn's disease, noting the absence of discussions about sexual health with her gastroenterologist, and asks Dr. Carlton for advice on initiating these conversations

11:23: Dr. Carlton emphasizes the importance of finding knowledgeable and open health care providers, encouraging LGBTQ+ individuals with IBD to seek providers who are comfortable discussing and addressing their unique health care needs

11:58: Dr. Carlton stresses the importance of honest discussions about sexual health and the impact of IBD on one's sex life, as well as advocating for better health care for the LGBTQ+ community

15:30: What our hosts learned from this episode

You can find Dr. Carlton on Instagram and TikTok here: @doctorcarlton

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.

We’re joined by Kristal Hartman who is a proud member of the Obesity Action Coalition (OAC) and is honored to serve as the Chair of the OAC National Board of Directors. In this episode, we learn about her patient journey, including her bariatric surgery in August 2014, which she describes as the hardest and best decision she ever made for herself. She shares how she now fights for access to quality, compassionate, and affordable access to care for all people living with the chronic disease of obesity.

Among the highlights in this episode:

01:37: Kristal discusses how attending an advocacy day in Washington, D.C. helped her find a supportive community and significantly impacted her obesity management journey

03:40: Kristal and Zoe Rothblatt, Associate Director of Community Outreach at GHLF, talk about the importance of community in managing chronic conditions. Kristal shares her struggles with obesity from her teens and the challenges she faced with weight management, including her experiences with polycystic ovarian syndrome, thyroid issues, and fertility problems, which compounded her obesity

07:48: Kristal shares her difficult decision to undergo bariatric surgery after trying various treatments for obesity and facing shaming from her primary care physician. Kristal highlights the transformative care she received from her obesity care team post-surgery and emphasizes the lifelong nature of managing the chronic disease of obesity

11:49: Zoe and Kristal discuss the need for compassionate health care, and the negative internalization of societal and medical bias against obesity

14:33: Kristal discusses the Obesity Bill of Rights, advocating for equal access to care and treatment for people living with obesity, and emphasizes the need to combat weight bias and discrimination

17:37: Kristal expands on her involvement in advocating on Capitol Hill for the Treat and Reduce Obesity Act (TROA), which aims to provide comprehensive care and access to FDA-approved medications for obesity

22:01: Kristal discusses the impact of media on the perception of GLP-1 drugs and obesity treatment and emphasizes the need for comprehensive, science-backed care for obesity as a chronic disease

25:10: Kristal encourages listeners to get involved with OAC and advocate for fair and unbiased treatment of obesity at all levels, highlighting various ways individuals can contribute to the cause

For more information, visit www.obesityaction.org

27:57: What our hosts learned from this episode

Contact Our Hosts

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

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

A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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 Jae Walker, who lives with multiple autoimmune diseases including rheumatoid arthritis, fibromyalgia, and a rare neurological disease. Jae shares their emotional journey to diagnosis, offering advice for other people living with chronic illness on advocating for yourself and not giving up.

Among the highlights in this episode:

01:21: Jae shares the onset of their rheumatoid arthritis symptoms, detailing the progression of the symptoms, the challenges of everyday activities, and the breaking point that led them to seek medical help

04:25: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, highlights the common reluctance among patients to acknowledge the severity of their symptoms

04:36: Jae discusses their path to diagnosis from initial denial and misinterpretation of symptoms to the pivotal role of their primary care provider (PCP) in suspecting rheumatoid arthritis despite inconclusive tests

07:58: Zoe and Jae discuss the critical role of specialized testing in Jae's diagnosis, including Jae’s journey through rheumatology, the use of MRI, and the relief and realization brought by visual confirmation of inflammation

09:25: Jae discusses the emotional and physical toll of rheumatoid arthritis, touching on the impact of receiving a long-term diagnosis, the initial struggle with acceptance, and the subsequent panic and overwhelm

11:28: Jae talks about the importance of community and self-expression as they find solace and connection through online communities, blogging, and art, navigating the isolation and misunderstanding surrounding chronic illness

16:33: Jae addresses the challenge of additional diagnoses over the years, from fibromyalgia to small fiber polyneuropathy, and the importance of persisting in the search for answers despite medical skepticism

18:01: Jae shares their experience with small fiber polyneuropathy, including the struggle for recognition of their symptoms, the complexity of overlapping conditions, and the eventual diagnosis that connected disparate symptoms

25:44: Jae emphasizes the importance of documentation, advocating for oneself, and the power of having just one person who believes in your experience

Contact Our Hosts

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

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

A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

Measles has been reported in about a dozen states across the U.S. this year. In this episode, we’re discussing Florida’s response to this recent outbreak, and why it’s not in the best interest of protecting public health. In the news recap, we give an update on our advocacy related to Prescription Drug Affordability Boards (PDABs), discuss how nonprofits profited from COVID misinformation, explore lessons from a new report on vaccines, and talk about the rise in norovirus cases.

Among the highlights in this episode:

02:31: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, expresses concern over nonprofits profiting from COVID misinformation, emphasizing the danger to public health and the unethical nature of profiting from misinformation

04:42: Steven Newmark, Director of Policy at GHLF, reacts to the report on flu vaccines among Medicaid fee-for-service patients, showing surprise at the findings which link pharmacy reimbursement to vaccination rates, suggesting policy implications to improve public health

GHLF and the IQVIA Institute for Human Data Science co-released a groundbreaking report that found a direct link between pharmacy reimbursement and flu vaccination rates among Medicaid-covered adults. Learn more: https://ghlf.org/ghlf-news/pharm-remibursement-vaccine-rates/

05:08: Zoe emphasizes the contagious nature of norovirus, advising listeners on precautions and the importance of hygiene to prevent spread, especially during peak seasons

05:32: Our hosts discuss the measles outbreaks in Florida, including the state's response, vaccine rates, and the implications of vaccine hesitancy

10:51: Zoe and Steven explore public health policies and historical vaccine mandates, referencing past measures to control measles outbreaks and the balance between individual rights and public health

12:03: Our hosts emphasize the importance of community protection through vaccination, highlighting how vaccines protect not only the individual but also those who are immunocompromised or unable to receive vaccinations

12:48: Zoe and Steven discuss the importance of advocating for laws reducing vaccine exemptions, emphasizing the need for stricter policies on non-medical exemptions to ensure community health and safety

13:30: What our hosts learned from this episode

Contact Our Hosts

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

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

A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.