THIS TIME ON CODE WACK!
With millions of Americans poised to lose their health coverage due to government cuts to Medicaid and other health programs, what can you do to protect your health and access to care? If you find yourself uninsured, are there ways to get free or low-cost prescription meds and health care?
To find out, we spoke with Rachel Madley, director of policy and advocacy at the Center for Health and Democracy. She previously served as health policy advisor to Congresswoman Pramila Jayapal and worked in the Office of Legislative Affairs at the U.S. Food and Drug Administration. Having struggled personally with a chronic medical condition, Rachel shares her firsthand experience staying alive despite America’s cruel healthcare system. This is the first episode of a two-part series..
Check out the Transcript and Show Notes for more!
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SHOW NOTES
WE DISCUSS
Millions of Americans are at risk of losing health insurance starting in 2026, both from looming cuts to Medicaid as well as the near certainty that enhanced ACA marketplace subsidies will expire. What will this mean as a practical matter, for families already struggling to afford care? What do you think will be the first thing to go?
Madley: “That’s such a great question and I do think families are going to have to make tough choices that they shouldn’t have to make in a system that actually cares for people. . . .
‘Do we start rationing our medication? Do we avoid a doctor’s visit even if someone in our family is feeling sick or has some concerning symptoms?’
“And those are going to be very painful discussions and decisions that families are gonna have to have, sitting at their kitchen table [asking] ‘Can we afford to get the medical care that we need?’ And it’s really heartbreaking to know that that’s coming for so many people. And I think it drives a lot of the work that I do and I know that you’re doing right now . . . ”
You’ve spoken before about a period in your life when you were uninsured while managing a chronic health condition. Tell us about what that was like and how it shaped your perspective on our healthcare system.
Madley: “. . . as a young adult, I was uninsured and also living with type 1 diabetes, which many people may know, requires continuous insulin injections as well as specialist doctor visits to make sure that you are managing your disease and preventing any complications. It’s a lot to handle as are many chronic illnesses before you even think about the cost of managing all of that . . .
“ … what it looked like for me was going to the pharmacy to refill my insulin prescription and paying between $500 and $1,000 dollars out of pocket every month for just the insulin.
“And that doesn’t include how you actually get the insulin into your body, which is another big cost, either through injections or an insulin pump, which is the gold standard. I was actually in college at the time and so I used some of my leftover money from my student loans to actually pay those out of pocket costs.”
“And I do think that that experience led me to do what I do today, which is just to try and make sure that no one has to go through that again.”
… you recently published an open letter to anyone who might find themselves uninsured, reflecting on lessons learned through your own experience. What are the most important things people can do right now to protect themselves if they face losing coverage?
Madley: “Such a great question, and one of the reasons I wanted to write that piece was I wanna make sure that I can help people who are gonna go through the same situation with things that I learned along the way and wish I had known from the beginning.
“So the first thing I think is if you take medication, I used to wait to refill my prescriptions until I had fully run out … But what I learned was, if I refill my medication as soon as it’s ready, as soon as the insurance company will allow you, … even if I have, you know, one or two more doses still left, that can help you build a small emergency stockpile.
“The other thing is, if you think you may become uninsured soon, but you have insurance now, definitely schedule any doctor’s appointments that you think you may need … If you see a specialist for chronic illness management or anything like that, definitely make sure you schedule those appointments before December 31st, when your health insurance plan ends for this year. Because again, they can help you identify any problems, make any changes to your care that you may need.
“And [another] thing that I would suggest … is don’t be afraid to share your concerns about being uninsured or the cost of treatment with your medical providers.
“In my experience, medical providers have been incredibly understanding … because they’re constantly dealing with the same insurance system that we are. … There may be resources that you don’t know about – that I even never learned about being uninsured – that they can connect you with.”
Helpful Links
An Open Letter to Anyone Who Might Find Themselves Uninsured, HEALTH CARE un-covered
I was laid off and don’t have any income. What are my health insurance coverage options?, HealthInsurance.org
Accessing Healthcare From a Federally Qualified Health Center (FQHC), Health Services Advisory Group
Trump’s ‘Big Beautiful Bill’ is deadly to already vulnerable groups across the U.S., Prism Reports
Episode Transcript
Read the full episode transcript.
Guest Biographies: Rachel Madley
Rachel Madley, PhD is the Director of Policy and Advocacy at the Center for Health and Democracy. She previously worked as health policy advisor to Congresswoman Pramila Jayapal and in the legislative affairs office at the U.S. Food and Drug Administration.
Rachel received her PhD in Microbiology and Immunology from Columbia University where she was also a member of the executive board of Students for a National Health Program and Physicians for a National Health Program.
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