The Health Advocates

A podcast that breaks down major health news of the week to help you make sense of it all.

Portrait of host Steven Newmark
Portrait of host Zoe Rothblatt

“The Health Advocates” is hosted by Steven Newmark, Director of Policy at GHLF and Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. 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 Health Advocates” is part of the Global Healthy Living Foundation Podcast Network and hosted by Steven Newmark and Zoe Rothblatt.

S5, Ep 1- The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?

In his most optimistic outlook since declaring COVID-19 a public health emergency of international concern in January 2020, the World Health Organization’s Director-General, Tedros Adhanom Ghebreyesus, stated last week that “We are not there yet. But the end is in sight.”

The rollout of vaccines and therapies have undeniably helped curb deaths and hospitalization rates, but with protective measures being eased and over 1 million deaths this year alone, COVID-19 remains a cause for concern while governments explore how best to manage it going forward.

S4, Ep 13- Project Wheelchair Runway

Disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva who has championed this issue for years. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion and features advocates like Kelly Boyd as models in his Tumbler and Tipsy show. Now, we meet Kellie Cusack who lives with spinal muscular atrophy, and will be featured in a fashion show, as she “rolls down the runway” at New York Fashion Week on September 8th”

“Fashion really does play a role in your health,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “The physical and mental health is so tied together; you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good, as they say.”

S4, Ep 12- Fauci, the CDC, and Confidence in Public Health

Trust in public health officials is on a steep decline, so it’s no coincidence the Centers for Disease Control and Prevention is ordering an overhaul of its operations. It comes at a time when Dr. Anthony Fauci, Chief Medical Advisor to seven Presidents, has decided to step down at the end of the year.

“When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “So maybe now’s the time to step back and learn a little bit about how it works.”

S4, Ep 11- Methotrexate: Pharmacists Caught in The Middle

The Supreme Court’s decision, making abortion illegal, is causing confusion amongst pharmacists who prescribe methotrexate, a drug used to treat certain diseases but also to end ectopic pregnancies. In this episode, we hear the pharmacists role in helping patients retain wide access to this drug.

“Any health care professional’s first duty is to the patient, and they should do whatever it takes to assist that patient, either themselves or by referring to someone else who can help,” says Dr. Donald Miller, Professor of Pharmacy Practice at North Dakota State University and former member of the FDA’s Arthritis Advisory Committee.

S4, Ep 10- Add to the Outbreaks: Polio

Polio is the latest disease to make a comeback. One case in New York and traces of it found in London and Jerusalem have health advocates sounding an alarm of polio’s potential spreading with a renewed look at the vaccine’s effectiveness.

“It’s worrisome that polio can come back. It’s worrisome that there may be folks in this day-and-age of vaccine hesitancy and anti-vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

S4, Ep 9- Health Without Borders: Advocating for Rheumatoid Arthritis in the UK

For people living with rheumatoid arthritis, knowledge is power, whether it’s here in the United States or around the world. In this episode, learn what a leading health advocate in the UK is doing to serve 450,000 adults living with RA and 12,000 children with juvenile rheumatoid arthritis.

“Everything we do is about giving the individual living with inflammatory arthritis as much knowledge and as many tools for them to understand their condition,” says Clare Jacklin, CEO at National Rheumatoid Arthritis Society in the United Kingdom.

S4, Ep 8- How Worried Should You Be of Monkeypox?

As the World Health Organization declares monkeypox a global health emergency, the U.S. is getting more aggressive, directing states to share data, while another 800,000 doses of the monkeypox vaccine will soon be available nationwide. All this for the rare but potentially serious disease that is caused by the monkeypox virus.

“I think monkeypox is just similar to what we’ve been doing with COVID,” says Zoe Rothblatt, Associate Director of Community Outreach at Global Healthy Living Foundation. “Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out.”

S4, Ep 7- We Have a Doctor in the House

Each day seems to present new questions about COVID, its variants, and the best vaccines. In this episode, we get clear answers from GHLF’s own Dr. Daniel Hernandez about our risks to contract COVID and whether to wait for a new vaccine to come to market before getting boosted.

“You should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection,” says Dr. Hernandez, Director of Medical Affairs and Hispanic Outreach at Global Healthy Living Foundation. “There are very specific vaccines that are coming out. We have to make sure that we’re up to date with those as well in order to protect ourselves in the best way possible.”

S4, Ep 6- Patients Spark Action on Methotrexate

The recent abortion ruling by the U.S. Supreme Court created an unintended consequence for patients seeking methotrexate, a drug which prolongs the lifespan of people with rheumatoid arthritis and other inflammatory diseases. In this episode, learn how GHLF is championing the cause and advocating for these patients.

“Imagine what patients are going through…They’re told that they’re no longer able to fill that prescription because of a change in a law,” says Conner Mertens, Patient Advocate and Community Outreach Manager at Global Healthy Living Foundation. “It’s really scary time for some of these patients.”

S4, Ep 5-Methotrexate: Confusion and Controversy

If you’re immunocompromised, you’re tired of having to fight for basic health care. But after the U.S. Supreme Court issued Dobbs vs. Jackson which overturned Roe vs. Wade, access to the drug methotrexate, which prolongs the lifespan of people with rheumatoid arthritis, is being denied in some states due to its connection to abortion.

“There’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold,” says Cheryl Crow, founder of Arthritis Life. “So, to know that suddenly that’s going to be taken away from you, it’s really scary to a lot of patients.”

S4, Ep 4- Advocating for BIPOC and LGBTQIA+ Health Care

Diseases don’t discriminate; anyone can get one or suffer from a chronic illness. But they do disproportionately affect BIPOC and LGBTQIA+ communities. In this episode, Sarah Shaw, BIPOC Outreach Manager at Global Healthy Living Foundation, describes what it’s like being a Queer, Black woman living with chronic migraine, endometriosis, and anxiety and how health care providers must improve interaction with these communities.

“Maybe if there have been more representation showing that Queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, Women, Trans, and Non-Binary folks get migraine. If that representation had been there, maybe they would have jumped to a migraine conclusion diagnosis first, instead of what I was pushed on, which was, ‘Oh, it’s just anxiety or stress,’ when I was seeking answers,” says Sarah.

S4, Ep 3- When Is A Cold, Just A Cold?

Have you noticed your symptoms for a common cold during COVID are worse than normal? You’re not alone. Researchers believe our acquired immunity is lower, which can be particularly nerve wracking for those in the immunocompromised community.

“The weird thing about the pandemic during the lockdown phase is I didn’t get sick,” says Steven Newmark, Director of Policy at Global Healthy Living Foundation. “And I was so used to, my whole life, going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience.”

S4, Ep 2 – New Test: Are You Immune to COVID?

You’re vaccinated, boosted, and perhaps even had COVID. But how much protection do you currently have from the virus or one of its variants? An international group of researchers have developed a new blood test to help assess a person’s COVID immunity. While the test is already used in Europe, the FDA is in the process of reviewing the technology.

“If there was an at-home version…I would take it every week. The idea of just knowing and I would feel safe,” says Steven Newmark, Director of Policy at Global Healthy Living Foundation.

S4, Ep 1- Guess What We Learned at a Medical Conference?

The Health Advocates share several takeaways from attending a medical conference on rheumatology. One was a “bombshell finding” that chronic pain is now identified as its own disease. Another is that people’s level of anger and social isolation have declined after COVID vaccines became widely available.

“It was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at Global Healthy Living Foundation. “And we really aren’t being left behind. People are studying and are caring.”

S3, Ep 21- It’s Time to Start Your Wellness Evolution

What is your trilogy of living a healthy life? Is it the body, mind and soul or perhaps exercise, nutrition, and mindset? Whatever it is, we are all part of an evolution of wellness. In this episode, we introduce you to a new GHLF podcast, “Wellness Evolution” with its hosts Angel Tapia and Danielle Ali.

“Your community is such an essential part of your wellness,” says Danielle. “We have an opportunity to bring the community together to discuss mental health, like the physical wellness, and how that can change the experience that we’re having as a patient,” adds Angel.

S3, Ep 20- Don’t Let Them Gaslight Your Health

People living with chronic pain are often misunderstood. Their ongoing struggles cause those lacking compassion to gaslight them and minimize their symptoms. In this episode, we meet Catina Morrison, who is using her own experiences living with rheumatoid arthritis, fibromyalgia, and endometriosis to teach others how to stand up and self-advocate to overcome people, pain, and stigma.

“People who complain of chronic pain are often told that it’s in their head. “Oh, it can’t be that bad. It’s just a bad period. Aren’t period supposed to be painful?” No, they’re not,” says Catina Morrison, Corporate Nurse and Chronic Illness Coach.

S3, Ep 19- The Alphabet of COVID and Why It Matters

A series of letters and numbers have changed our lives: COVID-19, SARS-CoV-2, Omicron, Delta, BA.4, BA.5. So no wonder we’re confused by the virus and all its variants. In this episode, our host Zoe Rothblatt leads our class in sorting through the confusion and, together with Steven Newmark, bottom line why we need to understand it all.

“How do you recognize your symptoms? I did a COVID test because I was so nervous. I’m like, “No; it’s allergies.” And it would really be helpful if I read up more so I could recognize those symptoms and not bring myself into a panic,” says Zoe, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation.

S3, Ep 18- This Nerve-Wracking Time of COVID

Who doesn’t want to leave winter behind and enjoy life beyond COVID? But the truth is we’re living in a place in-between, eager to drop our guards and live life out in the open again but with the invisible threat of variants always looming nearby.

“I saw New York City has moved into the medium yellow risk category as (COVID) cases rise,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation. “That sent off the little alarm bells in my head…it’s a little nerve wracking to be moving into this category.”

S3, Ep 17- “We Grieve Who We Once Were”

The majority of Americans are now believed to have had COVID. So as communities lower their guard, the strategy to fight the virus is as much rooted in vaccines and masking as it is with new drugs that are being approved. But for our immunocompromised community, the fear of contracting COVID keeps them isolated while they long for that time when they were once free from chronic illness.

“We’re all just one chronic disease away from being chronically ill,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation. “I was once young and healthy before I got the diagnosis. We grieve who we once were and what we used to be able to do.”

S3, Ep 16- “Wear the Damn Mask”

Not everyone is cheering the news that the mask mandate on planes and trains has ended. While the Justice Department is appealing that ruling, those most susceptible to contracting COVID fear for their health and safety. In this episode, our hosts can’t contain their frustration and anger at those adults unwilling to wear masks for the common good.

“I don’t understand all these adults that act like children. For the good of people who are suffering; from immunocompromised, elderly, or whatever the case may be, just like wear the damn mask for a little bit longer,” says Steven Newmark, Director of Policy at the Global Heathy Living Foundation.

S3, Ep 15- Becoming a Health Advocate Through Grief

Rashaunda Shaw became a health advocate when her mother and sister were both hospitalized and dying. Now, she’s turned her grief into purpose.

“In the midst of us grieving, we would start this foundation to advocate and raise awareness around digestive diseases in the African American community,” says Rashaunda, founder of the nonprofit Shakeilya Shaw Scholars Education Foundation.”

S3, Ep 14- Patients Fight, Advocates Unite

For patients with chronic illness, getting through a day is often daunting. But these same people have the power to impact change when they share their stories. Recently, the Global Healthy Living Foundation participated in an advocacy event to educate lawmakers on challenges facing people with digestive diseases — all in an effort to pass laws to help them.

“A brave person who is suffering from a chronic health care condition is willing to visit their legislator in Washington or get on a Zoom to talk about how they’re impacted by digestive diseases and educate them about what’s happening in their community,” says Dale Dirks of the Digestive Disease National Coalition.

S3, E13: Overcoming Years of Chronic Pain and Misdiagnoses

Imagine having severe abdominal pain, insomnia, and weight loss- and nobody knows how to diagnose you. For patients like Eric, it took painstaking years to properly diagnose him with chronic pancreatitis. In this episode, meet his sister, Megan Golden, who quit her job and launched a nonprofit to help.

“With many diseases that require specialty care, if you’re not near one of the few experts and have the ability to see them, then you’re just out of luck,” says Megan, co-founder and CEO of Mission Cure, a nonprofit with the goal of improving patient outcomes.

S3, E12: COVID Subvariant: Stay Vigiliant My Friends

The new Omicron subvariant BA.2 hasn’t stopped the majority of people from lowering their guard against the virus. Cities are opening, businesses are returning their workers, and even New York City unvaccinated athletes and performers are allowed back.

“I’m trying to stay calm and I’m really grateful for these at-home tests because I had a COVID exposure last week,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “I was able to keep testing and I just felt so reassured to have the test on hand and not freak out like I did in Omicron.”

S3, E11: COVID at 2: How We’ve Changed

We’ve passed a dubious anniversary we’d all rather forget. This month marks two years since COVID forced the world into a pandemic. In this episode, we look back at how life changed, and what changes may become permanent.

“Folks are really struggling with mental health issues two years in the pandemic,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “Even more so for our community with underlying conditions.”

S3, E10: The Power of Virtual Advocacy

One of the best ways to improve health care in the United States is to educate lawmakers. And these days, conversations are made easy through Zoom. Recently, health advocates from the GHLF participated virtually in the Digestive Disease National Coalition’s Public Policy Forum. Their aim was to encourage the passing of the Safe Step Act, which would protect patients from insurance companies overriding doctor’s recommended therapies, and direct money to digestive disease research.

“Virtual advocacy has given us the ability to reach legislators in a way in which we previously weren’t able to,” says Corey Greenblatt, Manager of Policy and Advocacy at the Global Healthy Living Foundation.

S3, E9: Calculating Risk, Staying COVID Safe

As the country eases mask mandates, people are now balancing the risk of contracting and transmitting COVID with their decision to let down their guard. For the immunocompromised, there remains caution, concern, and sometimes fear.

“Let’s also remember that mask optional doesn’t mean no mask. You can still wear a mask if you want to. I certainly will,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “The Health Advocates are masking up!”

S3, E8: mRNA: COVID and Beyond

mRNA vaccines have provided valuable protection against COVID. Now, researchers say they can also be used to create a variety of vaccines and treatments in less time and at lower cost than traditional methods.

“The mRNA technology has been known for decades, but it was never fully realized until this crisis. And this new technology is currently being studied in cancer therapies, cystic fibrosis, heart disease and rare genetic conditions,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

S3, E7: Disparities in Treatment for Migraine Patients

Disparities in migraine and headache care exist at every single level, from seeking care to diagnosis to treatment. In this episode, we talk with a leading advocate in the BIPOC community who has made it her life mission to sound the alarm to help reduce disparities in health outcomes.

“Migraine is the least funded research area relative to its very high disease burden. And I knew that this was something that I wanted to get involved in,” says Sarah Shaw, BIPOC Patient Advocate, Community Outreach Manager at the Global Healthy Living Foundation.

S3, E6: Living With the COVID Endemic

For many, life feels flat from dealing with COVID for nearly two years. In this episode, we examine the growing momentum of states across the United States starting to deal with COVID as an endemic and not a pandemic.

“We didn’t and we won’t eradicate COVID as was a hope once upon a time, but we have to be prepared to live with the endemic phase,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

S3, E5: Too Soon to Be #OverCOVID

COVID fatigue has resulted in many people questioning everything from booster to masks — but this fatigue is dangerous to our immunocompromised community. They don’t have the luxury of declaring that COVID is over.

“Coping with the uncertainty of yet another variant is taking a toll on our mental health,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation. “COVID is not over and we’ll keep advocating and keep our listeners updated as more information comes out.”

EXTRA – Part 2: Not Paying it Forward: Insurance Practices

It’s tough enough to live with and manage a chronic illness without insurance companies making it even harder. From utilization management tactics like step therapy to copay accumulator adjusters where insurers charge a patient twice, there are many systems in place that save insurance companies money and increase costs for patients.

“Imagine going to a drive-thru and say you know what, I want to be a Good Samaritan, I want to pay for the person’s meal behind me,” says Corey Greenblatt, Manager of Policy and Advocacy at the Global Healthy Living Foundation. “Person behind them drives up and the person at the window says, ‘Hey, even though the person in front of you just paid for your meal, you didn’t pay for it, so I’m going to charge you again.’ The drive-thru collects the money twice, and the person now has to pay for themselves, even though that was already paid for.”

EXTRA- Part 1: What is the Cheat Code for Insurance Companies

Insurance companies devise new ways to save and make money. One method is called utilization management, where insurers direct patients to treatments that are counter to what the patient’s doctor recommends. Utilization management is so important and controversial that we’re devoting two episodes to the topic, so patients are better informed and can better advocate for themselves.

“Imagine being in the exam room with me and my neurologist and then getting told by your insurance company that you’re not eligible for the treatment that you both decided would work for you. That’s what happened to me,” says Joe Coe, Director of Digital Education and Strategy at the Global Healthy Living Foundation and host of the Talking Head Pain Podcast. “And my neurologist needed to do a ton of paperwork called prior authorizations to get my medication approved.”

Season 3, Episode 4: COVID Mandates at the Olympics

Athletes competing in the Winter Olympics in China will get a taste of the strict safety precautions many immunocompromised people have been following since the start of the COVID-19 pandemic.

“Athletes are not eating out, they’re masking up, double masking when needed, and avoiding friends and family,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “So I guess the irony is that these super fit athletes are living life like the immunocompromised community,”  responds Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

In this episode, we dive into the COVID precautions being taken in China. Plus, we discuss the fourth vaccination that immunocompromised people in the United States are now eligible to receive.

Season 3, Episode 3: Free Tests and Best Masks

With Omicron still surging in much of the United States, more people are in need of getting tested for COVID. So free at-home tests are now available to all Americans. At the same time, there is new guidance for what type of mask we should be wearing to stay safe. In this episode, we provide useful information on how to obtain at-home tests and which masks are recommended.

“Now, we have the KN95, which is the Chinese respirator standard. These may be more likely to be a fake. I bring this up because I actually think I bought a fake one. I was a little disappointed to find out when I did my research,” reveals Zoe. “You got some fake ones?,” asks Steven. “Yeah, I think so,” laments Zoe.

Season 3, Episode 2: The Best Surprise, Is No Surprise

Patients will benefit from a new law that took effect to start this year, making it illegal for doctors and medical institutions to send surprise bills to patients. It’s estimated that 10 million surprise bills are sent to patients, usually when they have no choice but to use an out-of-network provider, often during emergency room visits.

“When you’re lying on the table there with that big bright light in your face about to go under, you’re not necessarily thinking, Hey, are you in my network?,” says Zoe. Steven adds, “It’s not even like you could say, wait a minute before we start, are you in my network? But the good news is surprise medical bills are now, surprise, illegal.”

Season 3, Episode 1: Omicron: An Excess of Selfishness

As we start a New Year with the Omicron variant raging, there’s both a sense of hope and concern. There’s hope that symptoms are mild and we could reach herd immunity — and there’s concern that many people still aren’t vaccinated and refuse to wear masks.

In this episode, co-host Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation, tells the story of a person who recently refused to put on a mask in her apartment building, despite the known mask policy. “The doorman politely said, ‘Could you please put a mask on?’ And then the guy said, ‘Everyone I know has COVID, I’ll just get it when I get it. If it’s my time to go, it’s my time to go. Why do we even need this?’ And I was standing right there being like, you have no idea that you think this is a young healthy group here, but it’s not and people are living with serious conditions,” laments Zoe.

Catch up on season two with Steven and Zoe.

Season 2, Episode 12: Omicron: What Would George Carlin Say?

The rise in Omicron has put added stress on doctors and nurses, as well as on our emotions as we weigh whether to change holiday plans. New restrictions are in place, people are double-masking, boosters lag behind, and at-home COVID tests are hard to find. The uncertainty in how we should respond to Omicron reminds one of our hosts of a famous George Carlin joke, bouncing emotions between an idiot and a maniac.

“If I’m double masked, and I see someone wearing three masks, I’m like that person’s crazy. That person’s a lunatic. But if I see someone with only one mask or not masked, of course, I’m like, what an idiot, that person’s an idiot,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

Season 2, Episode 11: Omicron: Are We Going Backward?

Pandemics historically end after two to three years, but with the emerging Omicron variant, the question remains: Are we coming out of the pandemic or going backward? And how will we know when we cross the finish line and the pandemic is over?

“There’s never going to be a bright line that we cross but there’ll be a moment when hospitalizations are down, when we have the therapeutics to help us if we do get sick, similar with the flu and hopefully the strains will become less and less virulent,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

Season 2, Episode 10: The Future of Drug Prices

There are many factors at play when addressing the cost of prescription drugs. A recent poll showing 83% of adults think the cost of prescription drugs is unreasonable. In this episode, we examine several proposals being considered by Congress.

“So complicated. It seems like this could have really big implications for drug pricing and it will be interesting to see how this plays out especially because so many in our community rely on drugs to live meaningfully and daily life with their conditions,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.