In this episode, The Health Advocates are joined by their colleagues Kelly Gavigan, Chief Data and Analytics Officer, and Adam Kegley, Associate Director of Global Partnerships at GHLF. Together they delve into the unique challenges faced by the LGBTQ+ community in managing Inflammatory Bowel Disease (IBD). Based on the analysis of the results from a survey GHLF recently conducted, they explore how identity impacts health care experiences and treatment outcomes. This episode shines a light on the critical need for inclusive health care practices and offers valuable insights on improving patient-provider relationships. Join us as we uncover the lessons learned and steps forward for LGBTQ+ individuals living with IBD.

Among the highlights in this episode:

01:52: Zoe Rothblatt, Director of Community Outreach at GHLF, provides an overview of IBD, explaining the types and common symptoms

03:14: Adam discusses general and specific challenges faced by the LGBTQ+ community in health care settings, focusing on the impact of discrimination and the importance of inclusive practices

06:05: Kelly explains the objectives behind the survey and the methodology used to capture data from LGBTQ+ individuals with IBD

06:41: Kelly details the main findings from the survey, including demographic information and the impact of disclosing sexual and gender identities to health care providers

09:07: Adam discusses the apprehension LGBTQ+ individuals may feel about disclosing their sexual and gender identities to health care providers and explains the impact of anticipated discrimination, which can deter individuals from seeking necessary medical care

10:36: Kelly highlights the intention behind the survey to understand the specific needs and challenges faced by LGBTQ+ individuals with IBD

11:50: Kelly shares some surprising findings from the survey, such as the high percentage of participants who identified as gender other than cisgender man or woman, noting the importance of this diversity in respondents to gain a comprehensive understanding of the community’s needs

13:01: Adam reflects on the positive outcomes reported by survey participants who disclosed their LGBTQ+ identity to their health care providers, emphasizing how openness can lead to more personalized and effective health care, reducing the incidence of discrimination and improving overall patient satisfaction

14:23: Adam offers advice to LGBTQ+ patients who may be hesitant to disclose their identity to health care providers

15:40: Kelly discusses the next steps following the survey, focusing on how the findings can be used to develop targeted resources and educational materials for LGBTQ+ individuals with IBD

16:55: Adam and Kelly express their hope that the survey findings will lead to meaningful changes in how health care is delivered to LGBTQ+ individuals with IBD

18:51: 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, join The Health Advocates as they dive into the latest health news with a focus on the emerging H5N1 bird flu and its implications. They discuss the virus's potential to affect humans, current states with detected cases, and public health strategies to mitigate its spread. The hosts also touch on recent COVID-19 variants and the development of combined COVID and flu vaccines, reflecting on public health lessons learned from past pandemics and how these insights are shaping responses to new threats.

Tune in as our hosts discuss ongoing infectious disease challenges and the proactive measures in place to protect public health.

Among the highlights in this episode:

00:45: Steven Newmark, Chief of Policy at GHLF, discusses the emergence of H5N1 bird flu affecting dairy cattle and notes human infections linked to farms

02:15: Steven reflects on public health responses to infectious diseases and the importance of early containment

03:24: Zoe Rothblatt, Director of Community Outreach at GHLF, discusses a new COVID variant, KP3, highlighting its characteristics and impacts

05:11: Steven and Zoe discuss new vaccine strategies for COVID-19, including an FDA panel's recommendations and the development of a combined COVID and flu vaccine by Moderna

06:21: Zoe highlights the potential public health benefits of a combined COVID and flu vaccine

07:08: Steven mentions a new FDA approval for an RSV vaccine for adults aged 50-59

08:01: Zoe and Steven discuss recent congressional hearings on COVID-19 origins and public health responses, emphasizing the importance of accurate public health information and reflection on past actions

10:19: The hosts discuss the impact of public perception on trust in public health officials and the need for balanced scrutiny

12:07: Zoe reflects on the eroding trust in public health and ways to rebuild it

14:23: Steven stresses the importance of preparing for future health crises based on past experiences

15:45: 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.

After being diagnosed with a type of kidney disease called acute glomerulonephritis at the age of 10, Liz Schumacher learned how to find her voice and become her own best advocate for her treatment. Now through her work in health advocacy and health sustainability, Liz uses the lessons of resilience she learned through her diagnosis journey to inspire other patients to be their own advocates too.

Join Liz as she describes her health care journey, gives tips on strength and resilience, and shares how she advocates for other persevering patients like her.

Among the highlights in this episode:

01:47: Liz describes her initial diagnosis, and her emotions during her health journey through acute glomerulonephritis and four kidney transplants

03:43: Liz details the various ways in which her health care team made her feel included in her medical decisions, even when she was very young

05:42: Liz talks about how her experiences in the health care system have changed from when she was first diagnosed until now

08:05: Liz highlights the importance of talking openly with your providers about symptoms, side-effects, and general wellness so that your overall health is best managed

10:19: Liz describes how medical considerations from aging can be overlooked in treating people with chronic illness

11:55: Liz describes how her experience as a patient with a chronic illness plays a large role in her work as a health advocate

13:08: Liz talks about the necessity of building a support system, and how impactful her support system was during the COVID-19 pandemic

15:42: Liz details how the lessons of resilience she learned as a kid were important in her later as an advocate

18:35: Liz describes how her patient background can help her connect more closely with her clients and the people she works with daily

22:09: Liz highlights her work in health sustainability and details how her non-profit works to improve sustainable patient experiences

25:45: Liz closes by encouraging patients to persevere, be resilient, and fight for their healthcare to reach their health goals

26:26: 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’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.