We’re joined by Amanda Krzepicki, Policy Director at the Autoimmune Association. We talk about the long process of getting legislation passed, top issues the Autoimmune Association is advocating for, and how patient groups can come together to make a difference.

Among the highlights in this episode:

00:59: Amanda discusses her early career experiences and how they led her to patient advocacy, particularly focusing on autoimmune diseases

02:21: Amanda describes the work and impact of the Autoimmune Association, emphasizing its global outreach and patient support initiatives

03:08: Amanda explains the complex process of turning a bill into law and how patients can influence this process to result in more patient-friendly outcomes

05:33: Amanda gives a detailed account of recent successful advocacy efforts related to Medicaid drug rebates, highlighting the collaborative nature of these efforts

07:14: Amanda and Steven Newmark, Chief of Policy at GHLF, discuss the unintended consequences of rapid policy changes and the importance of thorough consideration and dialogue

08:47: Amanda and Steven stress the significance of forming coalitions among patient groups to strengthen their advocacy efforts

10:04: Amanda reveals how checking social media profiles of staff members helped reduce her nervousness before meetings with stakeholders

11:01: Steven and Amanda discuss how personal connections can aid in advocacy efforts, making legislative staff more relatable and approachable

11:22: Amanda outlines the current top issues she is working on, including the Safe Step Act and other legislative measures aimed at improving health care accessibility

14:28: Steven and Amanda emphasize the critical role of unity among patient advocacy groups in driving policy changes and achieving collective goals

15:57: 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.

Welcome to our special episode of The Health Advocates hosted by our 50-State Network and the Obesity Action Coalition (OAC). This episode features advocates Jody Quinn, Judy Nagy, Yolanda Clay, and Alecia Smith, who share their personal journeys — how they began sharing their stories, the invaluable support of community, the challenges they faced, and their successes along the way. You'll also hear their advice for others looking to make a difference.

Among the highlights in this episode:

01:17 - Judy recounts how being diagnosed with rheumatoid arthritis led her to advocacy and her extensive involvement with legislative support

02:12 - Jody describes her late diagnosis of psoriatic disease and her initial reluctance turned commitment to advocacy

03:14 - Alicia talks about her journey from seeking support for obesity to becoming a prominent advocate through the OAC

04:10 - Yolanda discusses her personal experiences with chronic obesity and how overcoming internal barriers propelled her into advocacy

05:22: Kendall prompts a discussion on how to get started in advocacy, with personal insights from each guest

07:00: Our guests discuss the importance of connecting with patient groups and finding communities that provide training and support for new advocates

08:56 - Alicia emphasizes the role of genuine passion in making an impact and connecting with others through advocacy

13:20 - Alicia reflects on her initial fears and how understanding the impact of personal stories helped her gain confidence in advocacy settings

16:36 - Judy emphasizes the critical role of fellowship and mentorship in navigating the complexities of advocacy and building resilience

20:25 - Jody highlights how mentors have supported her through her advocacy journey, sharing their knowledge and boosting her confidence in various advocacy activities

23:34 - Yolanda discusses her ongoing efforts to manage expectations and maintain motivation despite the slow pace of change in advocacy work

26:20 - Judy reflects on the need for patience in advocacy, sharing her long-term experience with legislative processes and the eventual rewards of persistent advocacy efforts

28:05 - Each guest offers their advice to those considering advocacy, emphasizing the importance of community, mentorship, and personal growth

Contact Our Hosts

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

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

Special Episode Co-Hosts

Kendall Griffey, Communications Manager at OAC

Erik Stone, Associate Director, Learning Experience Design at GHLF

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 Kevin Stephens, a weight loss surgery patient, and an active advocate with the Obesity Action Coalition (OAC). In this episode, we learn about Kevin’s struggle with his weight since childhood and the many health issues that come along with obesity. We talk a lot about the importance of health insurance coverage and reducing barriers to accessing treatment.

Among the highlights in this episode:

01:05: Kevin shares how he got involved with OAC and his personal connection to obesity advocacy

02:44: Kevin reflects on how his professional experience in health care policy complements his advocacy work

04:19: Kevin discusses his lifelong struggle with obesity, the decision to undergo weight loss surgery, and the transformative impact it had on his health and lifestyle

06:22: Kevin talks about the support he received from his workplace and the challenges he faced in accessing necessary treatments

09:04: Kevin highlights how obesity has affected various aspects of his health and the importance of recognizing obesity as a chronic disease

12:16: Kevin discusses his experiences with health care providers and insurance barriers in accessing new treatments for obesity

15:34: Kevin speaks on the importance of advocacy in overcoming health care biases and improving access to treatments

18:32: Kevin offers advice to other patients on how to start advocating for themselves and the impact of sharing personal stories

23:14: 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.