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Karen Mancera ended the phone call in a panic. In July, she was informed that she was being dropped from a program that allowed her to get free infusions of a medication she needed to keep her chronic inflammatory bowel disease at bay.
Without the medication, the symptoms of her disease, called ulcerative colitis, could be debilitating — persistent diarrhea, fatigue, abdominal pain and blood loss so severe she had once been hospitalized. But Johnson & Johnson, which manufactures the medication, Remicade, and runs the program that helped cover the cost of the drug, said she hadn’t submitted the necessary paperwork.
Ms. Mancera, 26, said she’d never received it. (Johnson & Johnson said it could not discuss an individual patient’s case, but it would be willing to discuss Ms. Mancera’s eligibility with her.)
Because Ms. Mancera’s insurance didn’t cover Remicade, she would be left to pay thousands of dollars out of pocket. As a doctoral student, that wasn’t feasible. Her annual income was under $50,000. So she turned to steroids, a much less effective alternative, she said.
“I feel very powerless,” Ms. Mancera said.
Ms. Mancera is among the estimated 129 million Americans who deal with a major chronic disease, like a heart condition or an autoimmune disease. Women are even more likely than men to have such conditions. For many, the cost of treating those diseases month after month, year after year, can prove to be its own chronic problem — one that can fill people with fear and lead to drastic measures and risky trade-offs.
“I will get through whatever this body does or takes me through,” said Shannon Hart, 59, who has had rheumatoid arthritis since she was a child. “But it’s the financial part of it that scares me.”
About three in 10 adults reported not taking medications as prescribed over the past year because of cost, according to data published by the nonprofit KFF in October. People cut pills in half or skip doses to stretch a prescription, or don’t take the drugs at all. Others scrimp on housing costs, food or transportation in order to afford prescriptions, said Dr. Seth A. Berkowitz, an associate professor of medicine at the University of North Carolina at Chapel Hill.
Women and people with disabilities are particularly likely to skip or delay medication because of financial concerns, according to the Centers for Disease Control and Prevention.
There is a common misconception that prescription costs are a major issue only for the uninsured, Dr. Berkowitz said. But those with insurance often shoulder a financial burden, too, with co-pays, coinsurance and annual deductibles adding up.
“The costs quickly become unaffordable for people, even if they have what they previously thought of as very good health insurance,” he said.
‘It’s the Future That Scares the Hell Out of Me’
In August, the Biden administration released the results of the first-ever negotiations between Medicare and pharmaceutical companies over the cost of 10 of the most expensive medications, many of which treat chronic diseases. The prices made clear the extraordinary cost some Americans with chronic diseases face. A drug called Stelara, for example, which can treat arthritis and bowel diseases, was recently listed at more than $13,000 per month; Imbruvica, a cancer treatment, was listed at almost $15,000 a month.
Even while on Medicare, Ms. Hart has had to pay $1,600 a month to get the medication Enbrel, which she needs to treat her rheumatoid arthritis. Enbrel was a focus of the Medicare negotiations.
Untreated, Ms. Hart’s disease can make her joints feel frozen and leave her barely able to move. By the time Ms. Hart reached her late 30s, her rheumatologist was imploring her to stop working. The stress of work increased inflammation and was taking a toll on Ms. Hart’s body.
In 2004, Ms. Hart left her job at a software company and filed for disability insurance. She’s since scraped by on those monthly payments, of about $2,500, but it doesn’t go far in Oakland, Calif., where she lives.
Struggling with a chronic disease can often hinder people’s ability to work, creating a “really vicious cycle,” Dr. Berkowitz said. “Not only do your expenses go up, but the income coming in may go down.”
Ms. Hart resorted to scheduling doctor’s appointments she didn’t need in hopes of stockpiling free medication samples. Then, in 2018, her provider told her about a patient assistance program that could help her get the drug at no cost.
Like Ms. Mancera, Ms. Hart considered the program a lifeline. But she, too, lost eligibility — albeit temporarily — after falling behind on paperwork while her mother was dying. She was able to get back on to the assistance program, but the experience served as a reminder of how reliant she is on it.
“It’s always in my head that this can evaporate at any time,” Ms. Hart said.
For the roughly four in 10 adults who have at least two chronic conditions, these financial pressures — and the precarity that comes with them — can be intensified.
Robin Kopel, a 64-year-old living in Somerville, Maine, has been giving herself a weekly injection of the drug Benlysta to treat the autoimmune disease lupus for about five years. It is just one of many issues she must manage, including a related kidney disease and a genetic heart condition. Ms. Kopel takes nine daily prescriptions in addition to her injections.
The cost of Benlysta was manageable with the robust insurance coverage she received through her job at CVS Health. But in October, she learned she would be laid off later this year. Her health coverage will run out in January. (CVS Health said it could not comment on individual employees’ statuses, but confirmed news of a layoff.)
The development has left her with a feeling of “existential dread,” she said. Still paying off credit card debt and student loans, she does not see retirement as an option, and can only hope to find a new job with decent insurance.
“It’s the future that scares the hell out of me,” Ms. Kopel said. “It’s all up in the air.”
‘The Doctors Are Here to Help’
Many patients feel uncomfortable bringing this subject of cost up with their doctors — and are unsure whether clinicians can help.
“I don’t know if they would understand, or if they could do anything about it,” Ms. Mancera said. Stacie Dusetzina, a professor of health policy at Vanderbilt University Medical Center, said sentiments like Ms. Mancera’s are common and justified.
“We don’t really give enough credit to how difficult it is for the patient to be in that position,” Dr. Dusetzina said.
The exact out-of-pocket costs of medications can be difficult for clinicians to figure out during a short visit, said Dr. Michael Steinman, a geriatrician and professor of medicine at the University of California, San Francisco. But Dr. Steinman pushes his fellow clinicians to raise the affordability issue anyway.
“It’s something that’s very important to patients, something that we pay insufficient attention to, something that has real impacts on people’s lives — either because they’re going broke for the drug or they’re not taking the drug,” Dr. Steinman said.
Though he knows it can be challenging, Dr. Berkowitz also encourages patients to express their concerns. “The doctors are here to help. It’s definitely their job to help you navigate the situation,” he said. Speaking up can also have benefits, such as allowing patients to learn about alternative medications, assistance programs and which prescriptions to prioritize. Pharmacists can also be a resource about alternatives, Dr. Dusetzina said.
After Ms. Mancera lost access to her medication in July, she began to experience fatigue, blood loss and diarrhea. She didn’t have the energy for work, and her emotional health suffered.
Finally, in October, she received her first infusion of Remicade in months after she was able to switch to an insurance plan that helped cover the cost. It was a huge relief, and she soon began to feel healthy again.
Then, last week, she received her portion of the bill: $900 for a single infusion. She’ll figure out a way to pay it. But the prospect of spending her whole life worrying about getting her medicine can be hard to swallow.
“Honestly,” she said, “it gets pretty overwhelming.”
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