We’re reporting live from the American College of Rheumatology (ACR) Convergence 2024 in Washington, D.C., a yearly gathering for rheumatology experts worldwide. Join us as we talk to rheumatologists, researchers, and patients to discover how these advancements in research are shaping the future of health and advocacy.

Among the highlights in this episode:

00:43: Dr. Sharon Dowell discusses her background as a rheumatologist and her favorite ACR session, "Thieves Market," which emphasizes the diversity of rheumatology cases

01:27: Dr. Dowell explains how events like ACR enhance advocacy by providing opportunities for networking and sharing global perspectives on patient care

02:24: Dr. Swamy Venuturupalli shares his excitement about lupus-specific sessions, especially on CAR T cell therapy, and how these advancements could help his patients

03:36: Dr. Venuturupalli emphasizes the importance of ACR as a global platform for learning and collaboration in rheumatology research

04:25: Cristina Montoya, a registered dietitian and patient advocate, shares her experience presenting on unrecognized symptoms of rheumatic diseases

05:29: Cristina highlights her work with the OMERACT Children’s Disease Working Group and her contributions to developing new outcomes for clinical trials

06:44: Dr. Shilpa Venkatachalam reflects on the patient-centered focus at ACR 2024 and the collaborative advancements in biologics and treatment modalities

09:02: Dr. Venkatachalam explains the value of patient-centered research in making invisible diseases visible through patient-reported outcomes and clinical data

12:06: Dr. Venkatachalam discusses how tools like PatientSpot empower patients to advocate for themselves by providing a full picture of their lived experiences

For more information about PatientSpot, visit: https://patientspot.org/

13:14: Zoe wraps up the episode, emphasizing the significance of research presented at ACR in improving patient outcomes and 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.

We’re reporting live from the American College of Rheumatology (ACR) Convergence 2024 in Washington, D.C., a yearly gathering for rheumatology experts worldwide. Join us as we talk to rheumatologists, researchers, and patients to discover how these advancements in research are shaping the future of health and advocacy.
Among the highlights in this episode:
00:43: Dr. Sharon Dowell discusses her background as a rheumatologist and her favorite ACR session, "Thieves Market," which emphasizes the diversity of rheumatology cases
01:27: Dr. Dowell explains how events like ACR enhance advocacy by providing opportunities for networking and sharing global perspectives on patient care
02:24: Dr. Swamy Venuturupalli shares his excitement about lupus-specific sessions, especially on CAR T cell therapy, and how these advancements could help his patients
03:36: Dr. Venuturupalli emphasizes the importance of ACR as a global platform for learning and collaboration in rheumatology research
04:25: Cristina Montoya, a registered dietitian and patient advocate, shares her experience presenting on unrecognized symptoms of rheumatic diseases
05:29: Cristina highlights her work with the OMERACT Children’s Disease Working Group and her contributions to developing new outcomes for clinical trials
06:44: Dr. Shilpa Venkatachalam reflects on the patient-centered focus at ACR 2024 and the collaborative advancements in biologics and treatment modalities
09:02: Dr. Venkatachalam explains the value of patient-centered research in making invisible diseases visible through patient-reported outcomes and clinical data
12:06: Dr. Venkatachalam discusses how tools like PatientSpot empower patients to advocate for themselves by providing a full picture of their lived experiences
For more information about PatientSpot, visit: <a href="https://patientspot.org/">https://patientspot.org/</a>
13:14: Zoe wraps up the episode, emphasizing the significance of research presented at ACR in improving patient outcomes and advocacy efforts
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: <a href="mailto:snewmark@ghlf.org">snewmark@ghlf.org</a>
Zoe Rothblatt, Director of Community Outreach at GHLF: <a href="mailto:zrothblatt@ghlf.org">zrothblatt@ghlf.org</a>
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 <a href="mailto:podcasts@ghlf.org">podcasts@ghlf.org</a>
Catch up on all our episodes on our website or on your favorite podcast channel.

A podcast that breaks down major health news of the week to help you make sense of it all. Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

A podcast that breaks down major health news of the week to help you make sense of it all. Our goal is to help you understand what&rsquo;s happening in the healthcare world to help you make informed decisions to live your best life.

The Health Advocates

A podcast that breaks down major health news of the week to help you make sense of it all. Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. The podcast is part of the Global Healthy Living Foundation Podcast Network and hosted by Steven Newmark, Chief of Policy at GHLF, and Zoe Rothblatt, Director of Community Outreach at GHLF.

A podcast that breaks down major health news of the week to help you make sense of it all. Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. The podcast is part of the Global Healthy Living Foundation Podcast Network and hosted by Steven Newmark, Chief of Policy at GHLF, and Zoe Rothblatt, Director of Community Outreach at GHLF.

S7, Ep 31- Live from ACR Convergence: Key Takeaways from Rheumatologists, Researchers, and Patients

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.

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&nbsp;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&rsquo;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 <a href="mailto:advocacy@ghlf.org">advocacy@ghlf.org</a>
To learn more about the 50-State Network&rsquo;s Advocating for Vaccines Training, visit: <a href="https://ghlf.org/vaccine-training-page/">https://ghlf.org/vaccine-training-page/</a>
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 &amp; 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&rsquo;s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at <a href="mailto:advocacy@ghlf.org">advocacy@ghlf.org</a>
17:47: Steven and Zoe exchange heartfelt reflections on the season, expressing gratitude to listeners and excitement for what&rsquo;s to come in 2025
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: <a href="mailto:snewmark@ghlf.org">snewmark@ghlf.org</a>
Zoe Rothblatt, Director of Community Outreach at GHLF: <a href="mailto:zrothblatt@ghlf.org">zrothblatt@ghlf.org</a>
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 <a href="mailto:podcasts@ghlf.org">podcasts@ghlf.org</a>
Catch up on all our episodes on our website or on your favorite podcast channel.

S7, Ep 34- Health Policy and Advocacy: 2024 Reflections and What’s Ahead in 2025

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.

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: <a href="https://www.connectingpcs.org/">https://www.connectingpcs.org/</a>
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: <a href="mailto:snewmark@ghlf.org">snewmark@ghlf.org</a>
Zoe Rothblatt, Director of Community Outreach at GHLF: <a href="mailto:zrothblatt@ghlf.org">zrothblatt@ghlf.org</a>
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 <a href="mailto:podcasts@ghlf.org">podcasts@ghlf.org</a>
Catch up on all our episodes on our website or on your favorite podcast channel.

S7, Ep 33- Crohn’s and Colitis Awareness Week with Keyla Caba

In this year’s Thanksgiving special of The Health Advocates, Steven and Zoe delve into an important topic — weight bias — and how it impacts the chronic illness community. They explore the misconceptions surrounding weight and health, share strategies for fostering compassionate care, and encourage listeners to use the holiday as an opportunity to educate and advocate with loved ones. Join them for an inspiring conversation filled with practical advice, personal reflections, and gratitude for the patient advocacy community.

Among the highlights in this episode:

03:17: Zoe Rothblatt, Director of Community Outreach at GHLF, highlights the importance of policy advocacy, mentioning federal legislation like TROA (Treat and Reduce Obesity Act), and how GHLF’s 50-State Network supports such initiatives

Join GHLF’s advocacy efforts and sign up for the 50-State Network to get involved

More information via this link: https://www.50statenetwork.org/become-a-50-state-network-advocate/

04:03: Steven Newmark, Chief of Policy at GHLF, explains how tackling weight bias can create a supportive environment, enabling people to pursue health without fear of stigma

04:21: Zoe points to research showing that unbiased, compassionate care leads to better health outcomes for patients

05:17: Steven and Zoe share their Thanksgiving traditions, from watching the Macy’s parade to relaxing with family and reflecting on the year

06:21: Zoe reminds listeners to be thankful for their own resilience and growth over the past year, encouraging them to rest and recharge

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.

In this year’s Thanksgiving special of The Health Advocates, Steven and Zoe delve into an important topic — weight bias — and how it impacts the chronic illness community. They explore the misconceptions surrounding weight and health, share strategies for fostering compassionate care, and encourage listeners to use the holiday as an opportunity to educate and advocate with loved ones. Join them for an inspiring conversation filled with practical advice, personal reflections, and gratitude for the patient advocacy community.
Among the highlights in this episode:
03:17: Zoe Rothblatt, Director of Community Outreach at GHLF, highlights the importance of policy advocacy, mentioning federal legislation like TROA (Treat and Reduce Obesity Act), and how GHLF’s 50-State Network supports such initiatives
Join GHLF’s advocacy efforts and sign up for the 50-State Network to get involved
More information via this link: <a href="https://www.50statenetwork.org/become-a-50-state-network-advocate/">https://www.50statenetwork.org/become-a-50-state-network-advocate/</a>
04:03: Steven Newmark, Chief of Policy at GHLF, explains how tackling weight bias can create a supportive environment, enabling people to pursue health without fear of stigma
04:21: Zoe points to research showing that unbiased, compassionate care leads to better health outcomes for patients
05:17: Steven and Zoe share their Thanksgiving traditions, from watching the Macy’s parade to relaxing with family and reflecting on the year
06:21: Zoe reminds listeners to be thankful for their own resilience and growth over the past year, encouraging them to rest and recharge
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: <a href="mailto:snewmark@ghlf.org">snewmark@ghlf.org</a>
Zoe Rothblatt, Director of Community Outreach at GHLF: <a href="mailto:zrothblatt@ghlf.org">zrothblatt@ghlf.org</a>
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 <a href="mailto:podcasts@ghlf.org">podcasts@ghlf.org</a>
Catch up on all our episodes on our website or on your favorite podcast channel.

S7, Ep 31- Live from ACR Convergence: Key Takeaways from Rheumatologists, Researchers, and Patients

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