In this season premiere of The Health Advocates, our hosts welcome Nitika Chopra, the Founder and CEO of Chronicon. Nitika shares her personal journey of living with psoriasis and psoriatic arthritis and how her experiences inspired her to create Chronicon, a platform and community aimed at empowering people living with chronic illnesses. Together, they discuss the importance of amplifying marginalized voices, making accessibility a priority, and building a supportive network for those with chronic conditions.

Tune in to hear Nitika’s inspiring story and her vision for fostering change and connection in 2025.

Among the highlights in this episode:

00:40: Steven Newmark, Chief of Policy at GHLF, introduces Nitika Chopra, highlighting her journey with psoriasis and psoriatic arthritis and her work as the founder of Chronicon

01:30: Nitika shares her background, her experience of living with chronic illness for over 30 years and her motivation for starting Chronicon

02:04: Nitika recounts her diagnosis journey, starting with psoriasis at age 10 and later psoriatic arthritis at 19, and how growing up without a community left her feeling isolated

03:53: Nitika shares a memory of her first connection with another chronic illness patient — her grandmother, who had myasthenia gravis — and how their experiences differed but inspired her advocacy

05:32: Zoe Rothblatt, Director of Community Outreach at GHLF, asks Nitika to elaborate on the evolution of Chronicon, from an in-person conference in 2019 to an online community and event tours post-pandemic

08:16: Nitika shares a rewarding moment from her journey — the overwhelming response to Chronicon’s first conference and the connections it fostered among attendees

10:47: Nitika shares the inspiration behind Chronicon, crediting a transformative experience at another conference that sparked the idea of creating an inclusive and empowering space for those with chronic illness

13:46: Nitika discusses the importance of uplifting marginalized voices in the chronic illness community and her commitment to ensuring diversity in every panel at Chronicon events

16:19: Nitika highlights where listeners can follow Chronicon on Instagram (@chroniconofficial) and stay updated on upcoming events, including her 2025 spring and fall tours

16:41: Zoe and Steven emphasize the importance of making accessibility and inclusivity integral parts of 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 special season finale of The Health Advocates, our hosts look back on a year of legislative wins, advocacy milestones, and patient-driven successes in 2024. From step therapy reforms to copay accumulator bans, they highlight progress at both state and federal levels. Steven and Zoe also share their advocacy priorities for 2025, including the Safe Step Act, Help Copays Act, and continued vaccine advocacy. Join us as we celebrate the power of patient stories, look ahead to a critical year in health policy, and thank the advocates who made this progress possible.

Among the highlights in this episode:

00:37: Our hosts kick off the final episode of 2024 by thanking listeners and celebrating this year’s achievements in advocacy and health policy

01:20: Steven Newmark, Chief of Policy at GHLF, highlights legislative victories: Oregon, Vermont, and Puerto Rico passed laws banning copay accumulator adjusters, while the Help Copays Act gains momentum federally

02:33: Our hosts discuss step therapy reforms, with Illinois, Vermont, and Wyoming joining 25 other states in passing protections. Steven shares progress on the Safe Step Act at the federal level

03:00: Zoe Rothblatt, Director of Community Outreach at GHLF, explains the importance of non-medical switching reforms, with Iowa achieving key wins alongside advances in biomarker testing legislation in several states

03:33: Steven introduces the work on Prescription Drug Affordability Boards (PDABs), where GHLF actively engaged in Colorado, Oregon, and Maryland to amplify patient voices

05:31: Zoe and Steven outlines priorities for 2025 at the state level, including copay accumulator bans, Share the Savings initiatives in New York, and continued focus on vaccines and drug affordability

If you want to get involved with any of the issues mentioned above email us at advocacy@ghlf.org

To learn more about the 50-State Network’s Advocating for Vaccines Training, visit: https://ghlf.org/vaccine-training-page/

06:40: Our hosts set the stage for federal advocacy in 2025, emphasizing key legislation like the Safe Step Act, Help Copays Act, and Treat and Reduce Obesity Act (TROA)

08:12: Steven and Zoe reflect on the potential impacts of the Trump administration, including key nominations like RFK Jr. for the U.S. Department of Health and Human Services (HHS) and Dr. Oz for Centers for Medicare & Medicaid Services (CMS)

11:10: Our hosts discuss the complexities of the U.S. health care system, the burden on chronic disease patients, and the role of advocacy in improving access and affordability

15:16: Steven explains the importance of balancing public and private health care options to ensure fairness and equity for all patients

16:53: Zoe wraps up with a call to action for 2025

Join GHLF’s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at advocacy@ghlf.org

17:47: Steven and Zoe exchange heartfelt reflections on the season, expressing gratitude to listeners and excitement for what’s to come in 2025

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.

This Crohn’s and Colitis Awareness Week we’re joined by Keyla Caba, who lives with Crohn's disease and ulcerative colitis, and is the Founder of the nonprofit Connecting Pieces. Keyla shares her patient journey, talks about the common misconceptions people have about inflammatory bowel disease (IBD), and why awareness and community is important.

Among the highlights in this episode:

00:58: Keyla shares about her journey of living with IBD for over 12 years, her delayed diagnosis, and her experience as a caregiver to her child with ulcerative colitis

02:32: Keyla explains the challenges of living with an invisible illness and the importance of raising awareness for IBD

03:35: Keyla reflects on the progress in IBD treatments and the vital need for increased visibility and resources for patients

05:09: Keyla describes her early days as a newly diagnosed patient, highlighting the importance of tracking symptoms, finding community support, and effective communication with health care providers

06:11: Zoe Rothblatt, Director of Community Outreach at GHLF, asks Keyla about common misconceptions regarding Crohn’s disease and ostomies, sparking a discussion about stigma and myths

07:39: Keyla describes what a good day looks like versus a bad day, emphasizing her gratitude for even small victories

09:33: Keyla dives into how her relationship with food has evolved, including the challenges of managing an ostomy and adapting her diet through trial and error

11:45: Keyla discusses how she stays positive during flare-ups and the role of self-care, journaling, and social media in managing her mental health

13:16: Keyla shares how her personal experiences led her to advocate for better health care access and improved insurance policies for IBD patients

14:46: Keyla details her advocacy work, including lobbying legislators to improve insurance coverage for ostomy supplies and raising awareness through state and federal initiatives

17:17: Keyla introduces her nonprofit, Connecting Pieces, and its services, including free ostomy supplies and virtual support programs for patients and caregivers. To learn more about Connecting Pieces, visit: https://www.connectingpcs.org/

18:11: Keyla’s message of hope encourages listeners to reach out to the IBD community and embrace available support

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.