The Health Advocates

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.

We’re joined by Kristal Hartman who is a proud member of the Obesity Action Coalition (OAC) and is honored to serve as the Chair of the OAC National Board of Directors. In this episode, we learn about her patient journey, including her bariatric surgery in August 2014, which she describes as the hardest and best decision she ever made for herself. She shares how she now fights for access to quality, compassionate, and affordable access to care for all people living with the chronic disease of obesity. Among the highlights in this episode: 01:37: Kristal discusses how attending an advocacy day in Washington, D.C. helped her find a supportive community and significantly impacted her obesity management journey 03:40: Kristal and Zoe Rothblatt, Associate Director of Community Outreach at GHLF, talk about the importance of community in managing chronic conditions. Kristal shares her struggles with obesity from her teens and the challenges she faced with weight management, including her experiences with polycystic ovarian syndrome, thyroid issues, and fertility problems, which compounded her obesity 07:48: Kristal shares her difficult decision to undergo bariatric surgery after trying various treatments for obesity and facing shaming from her primary care physician. Kristal highlights the transformative care she received from her obesity care team post-surgery and emphasizes the lifelong nature of managing the chronic disease of obesity 11:49: Zoe and Kristal discuss the need for compassionate health care, and the negative internalization of societal and medical bias against obesity 14:33: Kristal discusses the Obesity Bill of Rights, advocating for equal access to care and treatment for people living with obesity, and emphasizes the need to combat weight bias and discrimination 17:37: Kristal expands on her involvement in advocating on Capitol Hill for the Treat and Reduce Obesity Act (TROA), which aims to provide comprehensive care and access to FDA-approved medications for obesity 22:01: Kristal discusses the impact of media on the perception of GLP-1 drugs and obesity treatment and emphasizes the need for comprehensive, science-backed care for obesity as a chronic disease 25:10: Kristal encourages listeners to get involved with OAC and advocate for fair and unbiased treatment of obesity at all levels, highlighting various ways individuals can contribute to the cause For more information, visit www.obesityaction.org   27:57: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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 are joined by Jae Walker, who lives with multiple autoimmune diseases including rheumatoid arthritis, fibromyalgia, and a rare neurological disease. Jae shares their emotional journey to diagnosis, offering advice for other people living with chronic illness on advocating for yourself and not giving up. Among the highlights in this episode: 01:21: Jae shares the onset of their rheumatoid arthritis symptoms, detailing the progression of the symptoms, the challenges of everyday activities, and the breaking point that led them to seek medical help 04:25: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, highlights the common reluctance among patients to acknowledge the severity of their symptoms 04:36: Jae discusses their path to diagnosis from initial denial and misinterpretation of symptoms to the pivotal role of their primary care provider (PCP) in suspecting rheumatoid arthritis despite inconclusive tests 07:58: Zoe and Jae discuss the critical role of specialized testing in Jae's diagnosis, including Jae’s journey through rheumatology, the use of MRI, and the relief and realization brought by visual confirmation of inflammation 09:25: Jae discusses the emotional and physical toll of rheumatoid arthritis, touching on the impact of receiving a long-term diagnosis, the initial struggle with acceptance, and the subsequent panic and overwhelm 11:28: Jae talks about the importance of community and self-expression as they find solace and connection through online communities, blogging, and art, navigating the isolation and misunderstanding surrounding chronic illness 16:33: Jae addresses the challenge of additional diagnoses over the years, from fibromyalgia to small fiber polyneuropathy, and the importance of persisting in the search for answers despite medical skepticism 18:01: Jae shares their experience with small fiber polyneuropathy, including the struggle for recognition of their symptoms, the complexity of overlapping conditions, and the eventual diagnosis that connected disparate symptoms 25:44: Jae emphasizes the importance of documentation, advocating for oneself, and the power of having just one person who believes in your experience Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

Measles has been reported in about a dozen states across the U.S. this year. In this episode, we’re discussing Florida’s response to this recent outbreak, and why it’s not in the best interest of protecting public health. In the news recap, we give an update on our advocacy related to Prescription Drug Affordability Boards (PDABs), discuss how nonprofits profited from COVID misinformation, explore lessons from a new report on vaccines, and talk about the rise in norovirus cases. Among the highlights in this episode: 02:31: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, expresses concern over nonprofits profiting from COVID misinformation, emphasizing the danger to public health and the unethical nature of profiting from misinformation 04:42: Steven Newmark, Director of Policy at GHLF, reacts to the report on flu vaccines among Medicaid fee-for-service patients, showing surprise at the findings which link pharmacy reimbursement to vaccination rates, suggesting policy implications to improve public health GHLF and the IQVIA Institute for Human Data Science co-released a groundbreaking report that found a direct link between pharmacy reimbursement and flu vaccination rates among Medicaid-covered adults. Learn more: https://ghlf.org/ghlf-news/pharm-remibursement-vaccine-rates/ 05:08: Zoe emphasizes the contagious nature of norovirus, advising listeners on precautions and the importance of hygiene to prevent spread, especially during peak seasons 05:32: Our hosts discuss the measles outbreaks in Florida, including the state's response, vaccine rates, and the implications of vaccine hesitancy 10:51: Zoe and Steven explore public health policies and historical vaccine mandates, referencing past measures to control measles outbreaks and the balance between individual rights and public health 12:03: Our hosts emphasize the importance of community protection through vaccination, highlighting how vaccines protect not only the individual but also those who are immunocompromised or unable to receive vaccinations 12:48: Zoe and Steven discuss the importance of advocating for laws reducing vaccine exemptions, emphasizing the need for stricter policies on non-medical exemptions to ensure community health and safety 13:30: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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 Washington Post released a story that the CDC is considering replacing the COVID five-day isolation period guidance with staying home until 24 hours fever free and improving symptoms. In this episode, we’re breaking down all we do and don’t know so far about COVID, its impact, and this potential change in recommendation from the CDC. In the news highlights, we discuss how unfortunately two million Texans have lost Medicaid coverage, and we also share the latest results on our quick poll on the patient experience with clinical trials. Among the highlights in this episode: 00:39: Zoe, Associate Director of Community Outreach at GHLF, explains that over two million people have been dropped from Medicaid in Texas, highlighting the significant impact of pandemic policies ending and procedural issues leading to disenrollment 02:22: Our hosts share insights from a GHLF quick poll about clinical trials with 68% of the 2,000 respondents indicating they had not participated in a clinical trial 04:57: Our hosts address leaked information regarding potential changes to CDC isolation guidelines for COVID-19, emphasizing the confusion and lack of official statements 06:14: The conversation shifts to the challenges of accessing COVID tests and the inadequacy of paid sick leave in the U.S., highlighting how these factors complicate the management of COVID-19 08:46: Zoe reflects on the current state of COVID, including declining hospitalizations but lagging booster shot uptake, stressing the ongoing concern for those with chronic illnesses 10:05: Steven Newmark, Director of Policy at GHLF, speculates on the potential impacts of changes to CDC guidance on isolation and masks, considering the general public's adherence to such guidelines 13:44: Our hosts discuss the particular risks COVID-19 poses to immunocompromised individuals and the challenges they face in the workplace 15:25: What our hosts learned from this episodeTo learn more about COVID guidelines and isolation, visit:https://creakyjoints.org/living-with-arthritis/coronavirus/patient-perspectives/covid-guideline-isolation-patient/  Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

Black History Month is a time to celebrate the great achievements and commemorate important Black heroes and events throughout our history. It’s also a time to reflect and raise awareness of racial and ethnic disparities across health care sectors. The Health Advocates are joined by Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF, for a discussion on the disproportionate burden of chronic disease in the Black community, barriers to health care, racism in health care, and ultimately, how we can come together as a community and advocate year-round. In this conversation, we delve into actionable steps for fostering inclusivity and driving future advancements in health care access and equity. Among the highlights in this episode: 00:56: Steven Newmark, Director of Policy at GHLF, discusses the initiation of Medicare price negotiations as part of the Inflation Reduction Act, highlighting the significant step toward potentially reducing drug prices 02:05: Our hosts discuss the Supreme Court's decision to take up a case on COVID misinformation and its implications on the First Amendment, emphasizing the balance between free speech and public health 04:25: The topic shifts to health equity, race, and public health outcomes in honor of Black History Month, with Sarah Shaw sharing insights on the work GHLF is doing and the broader importance of the month 05:18: Sarah shares about her role at GHLF in amplifying BIPOC voices and her personal experience living with chronic illnesses 06:13: Our hosts and guest discuss the widespread impact of health disparities across different diseases and the importance of addressing racism and social determinants in health care 07:08: Sarah provides examples of the disproportionate burden of chronic diseases on the Black community, including the impact of COVID-19 and misdiagnoses due differences in skin color 10:56: Sarah shares her personal journey in finding health care providers who reflect her background and ethnicity, highlighting the challenges and the difference it made in her care 14:54: Steven reflects on the individual and systemic efforts needed to improve health care access and reduce disparities 17:39: The discussion concludes shedding light on the collective effort required to address health care disparities, emphasizing collaboration between patients, medical schools, and advocacy organizations For more information, you can visit:https://ghlf.org/black-history-month/https://ghlf.org/chronic-illness/black-history-advocating-equity/ Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

About half of U.S. adults say it is difficult to afford health care costs, and about one in five adults say they have not filled a prescription because of the cost. So, what can we do about lowering costs to ensure timely access to affordable care and treatment? In this episode, the hosts give us the 411 on Prescription Drug Affordability Boards (PDABs), how they aim to reduce drug prices, and why patients must be part of this process. Among the highlights in this episode: 00:49: Steven Newmark, Director of Policy at GHLF, explains the role of PDABs, which are relatively new and aim to impose price controls on prescription drugs at the state level 01:04: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, and Steven discuss the high cost of health care in general, referencing The Kaiser Family Foundation data about the difficulties U.S. adults face in affording health care costs 03:38: Zoe and Steven discuss how high insurance costs can still be a burden, even for those with health insurance, affecting their ability to afford monthly premiums and deductibles 04:41: Steven explains the function of PDABs in reducing government and commercial market spending on prescription drugs and increasing affordability 06:50: Steven and Zoe discuss the selection process for prescription drugs reviewed by PDABs and the varying approaches of different states 08:12: Steven cautions that PDABs may not be the complete solution they appear to be, noting that they often lack direct patient perspectives in their decision-making process 09:50: Zoe shares a personal experience related to the high costs of medication, highlighting the challenges and stress associated with navigating health care costs 11:17: Steven emphasizes the critical role of patient advocacy in ensuring that the patient voice is heard and considered in health care policymaking, particularly in the context of PDABs 12:41: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF, joins Zoe Rothblatt, Associate Director of Community Outreach at GHLF, as co-host of this episode to share advocacy and policy priorities for the patient community in 2024. Corey breaks down which states are active in passing legislation that protects patients from step therapy and copay accumulators, and how patients can share their story to help pass these laws. Corey also highlights the need for patients to share their story to prescription drug affordability boards (PDABs). Finally, Corey shares federal policy updates, including exciting momentum for The Safe Step Act. Among the highlights in this episode: 01:12: Zoe and Corey discuss the results of a quick poll on psoriasis treatments, highlighting the importance of patients communicating with their doctors about treatment effectiveness and exploring different treatment options 02:43: Corey explains the value of having multiple treatment options for various conditions and the significance of maintaining open dialogue with health care providers to find the most beneficial treatment 03:46: Zoe mentions GHLF’s upcoming webinar; “Itching to Know About Psoriasis? A HEROES Webinar About Hair, Skin, and Scalp Health” to learn about psoriasis, its symptoms, and how to create a supportive, stigma-free environment. The webinar will take place on Monday, January 29, at 4pm ET. You can register via this link: https://ghlf.org/itching-to-know/ 04:04: Corey provides insights into the advocacy landscape for 2024, particularly focusing on the presidential election year and its impact on state government sessions 05:54: Corey explains the concept of Prescription Drug Affordability Boards (PDABs) and their role in evaluating medication cost-effectiveness at the state level 07:15: Zoe and Corey discuss how patient stories can influence PDABs' decisions on medication pricing and the importance of patient advocacy in these boards 09:22: Corey lists states involved in PDAB initiatives and encourages patients to share their medication experiences to inform state government decisions 12:52: The discussion moves to copay accumulator adjusters, with Corey outlining states with active legislation on this issue and advocating for patient involvement in legislative processes, regardless of personal experience with these policies 17:44: Our hosts discuss the HELP Copays Act, another significant federal initiative, and CMS's (Centers for Medicare & Medicaid Services) efforts to gather patient experiences for drug price negotiation 19:53: Zoe concludes by encouraging listeners to participate in advocacy in any form, highlighting the momentum around the Safe Step Act and the impact of patient stories in shaping health care policy You can get in touch with our advocacy team at advocacy@ghlf.org Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

With measles outbreaks making headlines in the U.S., The Health Advocates are diving in to the history of measles in this country, how we got to these outbreaks after eliminating measles, the role of public health trust, and where we go from here to rebuild public health authority. “I think there tends to be this idea that the measles is just a rash or some spots on your skin. But no, and when you contract it, it's pretty bad,” says Steven Newmark, Director of Policy at GHLF Among the highlights in this episode: 00:36: Our hosts discuss the resurgence of measles despite widespread vaccination, highlighting recent cases in a few states. They talk about the risk factors, symptoms of measles, and the effectiveness of the measles vaccine 02:50: Steven recounts his personal experience with a measles scare during college 03:46: Steven provides a historical overview of measles in the United States, including its status as a nationally notifiable disease since 1912, and the significant impact of measles before the vaccine era 05:13: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, explains the efforts leading to the elimination of measles in the United States by 2000 and raises the question of why measles is resurfacing now 06:16: Steven discusses the decline in MMR vaccine rates among schoolchildren and the rise in vaccine exemptions, linking these trends to recent measles outbreaks 08:09: Steven and Zoe delve into the decline of public trust in health authorities and the challenge of communicating the importance of public health successes that are often invisible 11:44: Steven explores the balance between individual rights and public health, emphasizing the collective responsibility in preventing the spread of diseases like measles 15:20: Zoe emphasizes the need for better education on public health and vaccine safety, and the role of supporting vaccine legislation at the state level 16:25: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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 back and breaking down all the latest news so far in 2024. Steven gives us a debrief on what to look for this election year. We then dive into Florida’s plan to import drugs, why you may be switched from Humira to a biosimilar, and finally the latest hospitalizations and case rates this respiratory illness season. Among the highlights in this episode: 01:28: Steven discusses the political landscape of 2024, focusing on the upcoming election, and the primaries 03:05: Our hosts discuss the FDA's approval of Florida Governor Ron DeSantis' plan to import a limited set of drugs from Canada, covering the historical context, eligibility for receiving these drugs in Florida, and the specific drugs included 04:47: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, explains the next steps for Florida's drug importation program and highlights potential challenges, such as drug availability and compliance with FDA standards 06:13: Steven brings up CVS Caremark's decision to replace Humira with biosimilars on their formulary benefit 06:22: Zoe talks about the impact of CVS Caremark's decision on patients using Humira, including her personal experience and advice for patients facing a switch to biosimilars 08:51: Zoe and Steven discuss the winter respiratory virus season, including the rise in flu, COVID-19, and RSV cases, the effectiveness of flu vaccines, and personal strategies for staying safe during the peak of the respiratory virus season 13:03: Our hosts cover RSV activity and vaccine uptake, discussing the latest poll results from GHLF’s Patient Support Program, reasons for not getting vaccinated, side effects, and the importance of vaccines for prevention 15:52: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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 the third episode of our three-part series on polymyalgia rheumatica (PMR), we are joined by JP Summers, Patient Advocate and Community Outreach Manager at GHLF. JP shares what she’s learned from people living with PMR about managing their symptoms and advocating for themselves at doctor’s appointments. JP and Zoe Rothblatt, Associate Director of Community Outreach at GHLF, talk about the challenges of discussing health issues with loved ones but emphasize how these conversations can provide crucial support in diagnosing and managing PMR. This episode was made possible with support from Sanofi. Among the highlights in this episode: 01:06: The Health Advocates share their personal highlights from the year in advocacy, emphasizing the importance and impact of patient advocacy, particularly through the 50-State Network 03:05: JP Summers shares her insights on advocating for oneself, and the importance of patients taking immediate action upon noticing symptoms and being proactive about their health 06:51: JP discusses how to navigate the stigma that can come with a chronic illness like PMR and advises on how to effectively ask for help from family, friends, and health care providers 08:30: JP talks about the broader aspects of advocacy, including engaging with legislators and stakeholders 12:20: JP reflects on her conversations with PMR patients, highlighting the importance of community support and the power of sharing one’s story as a form of advocacy 22:44: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

Basmah joins The Health Advocates to share her Crohn’s disease patient journey. Initially, Basmah admits to not paying much attention or learning about her Crohn’s — and she fell behind because of her symptoms. This sparked her to do an online deep dive, learn about the disease, and start a journey of trial and error with lifestyle interventions and medicine. Basmah’s advice for others: “If one treatment or one lifestyle doesn't work out for you, there are so many other options right now. And the important thing is that you educate yourself, you have the opportunity and the resources to do so. And it's so important to connect with other people who have similar experiences with you.” This episode was made possible with support from Walgreens. Among the highlights in this episode: 01:50: Basmah recounts her diagnosis of Crohn's disease at age 16, highlighting her initial symptoms, challenges in understanding her condition, and the lack of resources at the time 03:20: Basmah discusses how she empowered herself with knowledge and lifestyle changes, leading to her remission since 2019 06:03: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, asks Basmah about the moment she realized her condition was chronic and how she started seeking resources 07:01: Basmah shares the holistic lifestyle adjustments she made after realizing the chronic nature of her condition, including dietary changes, and stress management 12:18: Zoe and Basmah discuss the importance of trial and error in managing lifestyle with a chronic condition, emphasizing the need to find what works best for each individual 14:14: Basmah offers advice to others living with chronic conditions, stressing the importance of education, community support, self-compassion, and enjoying life despite the challenges of chronic illness Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

About a year ago Linda Rinaldi began to feel full body pain. It felt like she had exercised too much, but when it became more extreme, she knew something was wrong. In a matter of days, she was diagnosed with polymyalgia rheumatica (PMR), a condition she had never heard of. Linda joins this episode of The Health Advocates to share her PMR patient journey and how the diagnosis ultimately led her to becoming a health advocate through sharing her story. Linda encourages others to listen to their body and speak up: “My advice is: don't stop. Tell the doctor; tell as many doctors as will listen to you what your symptoms are and advocate for yourself. You have to because if you don't, nobody else will do it. And nobody knows your body, what you're feeling, and what you're going through better than you.” This episode was made possible with support from Sanofi. Among the highlights in this episode: 01:07: Linda describes the onset of her PMR symptoms, likening them to feeling overexerted due to intense exercise 02:16: Linda details her initial struggle with PMR, emphasizing the severity of her symptoms that affected her entire body 03:34: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, inquires about Linda's experience upon visiting a rheumatologist for the first time 05:00: Zoe relates to Linda's experiences living with a chronic condition and notes the importance of having a reliable care team 06:47: Linda explains the nature of her PMR symptoms in detail, emphasizing her rapid improvement after starting steroid treatment 12:18: Zoe and Linda discuss the importance of sharing their health stories to help others 13:27: Linda advises listeners to be proactive in addressing symptoms, highlighting the importance of self-advocacy in health care Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

It’s Crohn’s and Colitis Awareness Week and we are joined by Mallory Schmoll, PharmD, Clinical Pharmacy Strategy at Walgreens. Mallory explains what IBD is, how it differs from irritable bowel syndromes (IBS), and the available treatments for patients. We also discuss the different types of remission, along with what it means to achieve remission, and questions to ask your doctor or pharmacist as you develop a treatment plan. This episode was made possible with support from Walgreens.  Among the highlights in this episode: 02:21: Mallory provides an overview of IBD, distinguishing it from IBS, and explains the characteristics of Crohn’s disease and ulcerative colitis (UC), including their autoimmune nature 04:47: Zoe discusses the importance of Crohn's and Colitis Awareness Week, sharing her personal experience with Crohn’s disease and emphasizing the community aspect in dealing with gastrointestinal (GI) conditions 06:26: Mallory addresses the challenges in diagnosing and treating IBD, including the time it takes to achieve an accurate diagnosis, individualized treatment plans, and the importance of achieving and maintaining remission 09:45: Zoe inquires about the trial-and-error phases in IBD treatment 12:14: Mallory outlines the various available treatment options for Crohn's and colitis, and the role of insurance and pharmacists in navigating these treatments 14:39: Mallory discusses biosimilars, their clinical equivalence to brand-name medications, and their potential to save costs for the health system and patients 16:24: Mallory highlights the role of supplements and vitamins in IBD treatment, emphasizing the importance of consulting health care providers before starting any new supplements to avoid interactions with prescription medications 17:22: Zoe and Mallory discuss the questions patients should ask their doctors about medications, emphasizing the importance of understanding risks and benefits to feel confident in managing their condition 18:39: Mallory explains the role of pharmacists in assisting patients with medication-related questions, insurance navigation and financial resources for copay assistance, encouraging them to utilize pharmacists as a resource and advocate 21:09 Mallory discusses how effective medication management can enhance the quality of life for patients with IBD Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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.

It’s our annual Turkey Day Talking Points episode! Our hosts discuss their favorite Thanksgiving foods and what they are especially grateful for. For this year’s Thanksgiving table conversation, our hosts are focused on copay assistance, accumulators and maximizers. They break down how to start a conversation about your advocacy efforts, and the topline points of what you and your friends and family need to know about these assistance programs and insurance practices. Among the highlights in this episode: 00:36: Our hosts share their Thanksgiving plans and favorite foods 01:05: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, reflects on the recent American College of Rheumatology conference, expressing gratitude for the sense of community and the opportunity to meet advocates and professionals in person 03:09: Zoe discusses the value of having meaningful conversations about health care advocacy at family gatherings, like Thanksgiving 03:52: Steven Newmark, Director of Policy at GHLF, elaborates on the importance of personal storytelling in advocacy, leading into a detailed discussion about copay assistance and its role in health care 05:18: Zoe explains the complications introduced by copay accumulator adjusters and maximizers, highlighting their impact on patients' financial responsibilities 06:30: Steven discusses the legislative progress made in protecting patient assistance programs, mentioning the role of state and federal advocacy in these developments 07:13: Zoe addresses the counterarguments from insurance companies and pharmacy benefit managers regarding copay laws, emphasizing the importance of supporting patient stories with data to strengthen advocacy efforts 08:32: Steven concludes the discussion by encouraging listeners to engage in advocacy and share their experiences with copay assistance, highlighting the practical impact of such initiatives Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects 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 is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by patient advocate Shelley Fritz who lives with rheumatoid arthritis (RA). Shelley describes her patient perspectives poster about how using the Mediterranean diet has led to significant enhancements in her quality of life through increased energy, reduced fatigue, less pain, and a greater willingness to socialize with family and friends. Contact Our Hosts Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org 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.