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.