WASHINGTON – When Abigail Meyers tried to refill her Hyrimoz prescription in February, she was shocked to discover that she had to pay around $1,400. The previous month, the cost was zero dollars.
“I was like, ‘Okay, that’s a big jump,’” Meyers said. “So I had a good cry about it. And then I was like, okay, time to go fight Big Pharma.”
Meyers, a journalism and political science senior at Simmons University in Boston, has juvenile idiopathic arthritis, an autoimmune disease that causes joint pain, swelling and stiffness, along with other chronic conditions. She takes Hyrimoz in an injection every other week to manage her symptoms. Hyrimoz is a medication used to treat various inflammatory conditions, including Crohn’s disease and plaque psoriasis.
After receiving the $1,400 bill, Meyers and her parents tried to figure out why her prescription cost had jumped. They reached out to the pharmacy, insurance company and manufacturer, but none could explain the hike or help to reduce the bill, so they paid the full amount.
“I’m dealing with chronic pain, and I’m still a full-time student. I have to go to class, I have to do all these other things,” Meyers said. “We ended up biting the bullet.”
Like Meyers, around 60% of Americans have at least one chronic disease, according to the National Institute for Health Care Management Foundation. High health care costs and a confusing system can take a significant mental toll on people who have chronic disease, and some advocates say recent health policy changes at the federal level have contributed to and, in many cases, escalated the stress.
Health policy at the federal level
People who have chronic diseases face greater financial stress due to changes in Medicaid eligibility and the discontinuation of Affordable Care Act tax credits, according to Jennifer Dexter, the National Health Council’s vice president of policy. The National Health Council, a nonprofit made up of various health-related organizations, serves as an advocacy group for people with chronic diseases and disabilities.
According to KFF, the Medicaid work requirements in the 2025 “One Big Beautiful Bill” could lead to millions of Americans losing their health insurance when the provisions go into effect in January 2027. With the expiration of the Affordable Care Act tax credits in January, many people are facing significant increases in premium payments for their health care or have lost it altogether.
As part of her role within the National Health Council, Dexter advocates for health care reform policies in Congress and speaks with lawmakers on Capitol Hill.
Dexter said when it comes to policy, there is a difference between addressing the overall financial state of the health care industry and an individual patient’s experience.
“(Congress spends) so much time, rightfully so, working on how to make the system work in a good way, without necessarily getting as much information as to how that trickles down to individual patients,” Dexter said.
She also said she has noticed lawmakers sometimes use personal perspectives or anecdotes to inform their understanding of the health care system rather than getting a holistic view of the experiences people might have.
Even when one problem is solved, Dexter said, others tend to pop up because committees in Congress have different jurisdictions for addressing health care costs.
“We’re playing a lot of whack-a-mole right now with all the different parts of the health care system that can be driving costs up, both for the system and for the patient,” Dexter said. “That’s the nature of the beast here in Congress.”
Reaching out for help
In the past few years, Dexter said, the National Health Council has tried to figure out how to better connect patients with counseling services and support because of the significant impact mental health has on people with chronic diseases.
She said she has always viewed mental health and chronic disease as something to be treated in a “hand in glove” manner.
“There is such an emotional toll of not just having a chronic disease or disability, but the amount of energy and work that goes into navigating everything,” Dexter said. “It’s a long journey, and that just adds a lot of stress and anxiety for a lot of folks.”
Meyers knows that journey intimately. She was diagnosed with juvenile idiopathic arthritis when she was seven and had to give up the sports and physical activities she previously enjoyed.
However, managing her mental health is “easily the hardest part” of dealing with chronic disease, she said.
Meyers started seeing a therapist during her freshman year of college, although she said she did so to handle stress that wasn’t necessarily related to her health conditions.
She said her therapist was diagnosed with a chronic disease last year, which made it easier for them to connect on a deeper level.
“Being able to just kind of vent about it, not only to somebody who understands the way that she does, but being able to just kind of talk about it and have someone be like, ‘I’m really sorry that you’re going through that,’ is really helpful,” Meyers said.
Meyers said they will even share “little hacks” about dealing with some of the pain that comes with chronic disease.
Karen Winkler, a New York City-based therapist who specializes in chronic disease, anxiety and women’s issues, has lived with chronic illness since she was a young adult. She said she believes many therapists are not taught to think about how chronic disease or disability might impact their patients.
“I’ve had patients who have told me, you know, they may be adults and have had numerous experiences with therapy while they’ve had illness, and rarely talked about their illness to their therapist,” Winkler said.
She said people who have chronic diseases, on top of the full range of mental health struggles anyone can have, often contend with the “tremendous stress” and shame that may come with a chronic health condition diagnosis. She said some of her patients consider a chronic disease to be like a second full-time job.
The financial burden of having chronic health conditions frequently comes up during her sessions, she also said.
“It’s bad enough that you have to spend your life going from doctor to doctor… but then to have to struggle just to get reimbursement for it can be really, really discouraging and make people feel pretty helpless sometimes,” Winkler said.
In March, Meyers’ bill for her prescription went back to zero. However, she’s worried it might change again in the future. The stress of prescription drug costs, she said, has caused physical flares of her symptoms.
The TrumpRx website, which launched in February, was intended to give Americans options for lower drug prices. Meyers checked her medication on the website but said it would not be able to provide lower costs for her.
“There’s a lot of work that needs to be done in regards to health care policy. There’s a lot of change that needs to be made,” Meyers said. “I don’t think that’s coming with this administration at all. I think they’re going to keep hurting the people who need (help), especially the marginalized groups who are more susceptible to different conditions. It’s really, really disheartening.”