“If I were 10 percent less mean or 10 percent less stubborn, I’d probably be dead,” Sarah, a multiple sclerosis patient, said when describing her year-long battle to obtain the medication that could alter the course of the incurable condition and extend her productive life for years.

Diagnosed at age 37, Sarah said she experienced symptoms of this disease of the central nervous system, which can include numbness, weakness, troubling walking, vision changes, and slurred speech.

“I felt like my eyes had fallen out of my head,” she said.

Her doctor prescribed medication to lessen the symptoms, and that helped for a while, according to Sarah. But when her symptoms worsened, her doctor prescribed a newer drug called Kesimpta that promised relief but was also very expensive.

That’s where her story really begins.

Sarah, now 44, asked to be identified by first name only because of her employer’s contract with the federal government. She sought pre-authorization for use of Kesimpta from her insurance company.

Despite her worsening condition, the MRI results showing the progression of the disease, and letters from her neurologist at Johns Hopkins, Sarah’s insurer refused to cover the treatment.

“I priced it,” Sarah said. “It would have cost me $9,000 a month.”

That’s in addition to the $500 per month that she was already paying out-of-pocket for other medical expenses.

When she became unable to walk more than 10 feet, Sarah left her home in Maryland, moved in with her retired mother, and considered applying for disability.

Sarah’s story is not unique. Although President Donald Trump’s Most Favored Nation prescription drug pricing initiative has begun to lower some prices, many fully insured, chronically ill patients find themselves fighting two battles. One is the fight to overcome the disease and its effect on their body and mind.

The other struggle—often waged alone—is to overcome the bureaucratic hurdles imposed by health insurers, drug companies, and government agencies to obtain the treatments that could improve and extend their lives. Often, those treatments involve new drugs for which less-expensive generic versions are not yet available.

Bureaucratic Hurdles

“As a patient, you go through a lot of hoops,” said Beth Kitchin, 61, of Birmingham, Alabama.

After multiple rounds of inpatient chemotherapy to treat her leukemia, followed by a stem cell transplant, Kitchin’s health journey took yet another unexpected turn when she developed graft-versus-host disease, or GVHD.

The potentially life-threatening condition occurs when immune cells from transplanted tissue attack the recipient’s cells, causing a range of symptoms, from a rash to vomiting. It can be temporary or lifelong.

To treat this complication and its varied symptoms, Kitchin’s doctor prescribed several new and expensive medications. One was Jakafi, which costs more than $17,000 per month.

Patients in the United States pay higher drug prices than those in any other country, and prices for new medications are often the most expensive.

Kitchin, a health educator at the University of Alabama at Birmingham, was fully insured, and her insurer approved the treatment. But the co-pay was $1,800 per month.

What followed felt like a tug-of-war between the insurance company and the drug manufacturer, she said.

The manufacturer, Incyte Corp., offered a co-pay waiver for several months. When that expired, she paid $1,000 for 12 pills while continuing to search for alternatives. She eventually qualified for a patient assistance program from Incyte.

“It’s like a cycle,” Kitchin said. “Drug companies price their drugs really high. The insurance company battles back by only covering 70 [percent] or 80 percent, and then there’s this gigantic co-pay.”

She found that her insurer did not count the $1,800 monthly co-pay toward her annual out-of-pocket deductible, she said.

“These are the battles we fight,” Kitchin said, noting that, as a university employee, she had doctors, nurses, and social workers available to help her navigate the system. “But not everybody has that.”

Sarah said her experience with her insurer was similarly frustrating. After exhausting her appeals with the insurance company, she filed for an insurance fair hearing, a formal administrative procedure for resolving disputes in Maryland.

The hearing was scheduled for exactly one year after her doctor first prescribed Kesimpta. Two weeks before the hearing, the insurance company notified Sarah that her prior authorization was approved.

“They were going to battle me right until the very last second,” she said.

Prior authorization is a process whereby insurance companies require providers to submit proof of medical necessity in advance of rendering certain treatments or medications. If prior authorization is not requested or granted for these treatments, the insurance company can deny payment.

Insurers consider this a way to “promote safe, timely, evidence-based, affordable, and efficient care,” stated the Association of Health Insurance Providers, a trade organization.

The American Medical Association has said that the process is “overused” and has called on the insurance industry to eliminate “care delays, patient harms, and practice hassles” resulting from it.

In June, a group of major health insurers pledged to overhaul the prior authorization process to reduce administrative delays and improve access to care for Americans enrolled in commercial, Medicare Advantage, and Medicaid managed care plans.

‘Never a Smooth Process’

Sanie Mikaelian, 44, of Los Angeles, has been living with a rare form of blood cancer for 11 years.

“It’s a roller coaster,” she said, reflecting on her symptoms, the treatments she has endured, and the progression of her disease. Mikaelian also suffers from GVHD.

Adding anxiety to her already uncertain future is the annual reauthorization required by her insurer for continued treatment with Jakafi.

That’s not uncommon, according to the American Medical Association, which notes that reauthorization is often required even when patients have been using a medication to good effect for years and for some chemotherapies that are the only effective treatment for certain cancers.

A 2023 survey by the Arthritis Foundation found that 37 percent of patients were required to undergo reauthorization annually.

“God forbid that something with my insurance changes or if I switched my primary doctor, hematologist, or oncologist, and it happened to be around the annual prior authorization time,” Mikaelian said.

That was the case one year, and approval for continued use of the drug was delayed. To stretch her supply of the medication, she started taking half-doses, then quarter-doses, before gaining access to the medication again.

On another occasion, she changed employers and insurance companies, causing a delay in authorization.

“I was without the drug for almost a month, and having very serious withdrawals,” Mikaelian said. “It’s never a smooth process.”

Phone calls with physicians, pharmacy benefit providers, and insurance companies can take hours.

“No one is going to do this for you,” Mikaelian said.

Yet she believes that her involvement likely saved needless delays in treatment, given the burden the authorization process puts on health care providers.

The average medical practice handles 39 prior authorization requests per physician every week, according to a 2024 survey conducted by the American Medical Association, and 40 percent of physicians’ practices have a staff member whose only job is filing prior authorizations.

Feeling Unheard

Insurers, manufacturers, pharmacy benefit managers, and the government all appear to play a role in the issue of high drug prices. Part of the problem is misaligned priorities, according to Mikaelian.

“The drug companies and our legislators, unfortunately, are not incentivized to do right by us, and that is really the problem,” she said. “There are some that actively try to maintain the status quo.”

Kitchin agreed.

“Patients should be the top priority, and they will tell you that they are, but it’s profit they put first,” she said.

Sarah said: “I feel like my life is a talking point. We’re actually people, who are being affected by either bad legislation or an inability to pass any legislation.”

Just prior to sitting for an interview, each of these patients spent time on Capitol Hill, asking lawmakers to reject the Ensuring Pathways to Innovative Cures (EPIC) Act, currently before Congress.

The measure is billed as a way to ensure that drugmakers earn enough profit to invest in the development of new drugs.

The pharmaceutical industry trade association PhRMA argues that high drug prices are largely driven by the need to fuel further research and development as well as by price-fixing by other nations, Medicare price negotiations, and pharmacy benefit managers.

However, advocacy group Patients for Affordable Drugs calls it an effort to prevent Medicare from negotiating prices on commonly used drugs.

Included in the One Big Beautiful Bill Act is language that exempts or delays consideration of more than 300 medications for the Medicare Drug Price Negotiation Program. Advocates say that’s needed to ensure enough profit to develop new drugs.

The drugs in question make up just 3.6 percent of Medicare-covered medications but accounted for 24 percent of the more than $211 billion in Medicare drug spending in 2022.

Trump’s call to U.S pharmaceutical companies to adopt a Most Favored Nation prescription drug pricing policy has begun to lower some drug prices.

On Sept. 30, the White House and Pfizer jointly announced that the pharmaceutical giant will voluntarily comply with the plan, simultaneously lowering the price of many medications in the United States while raising them in other developed countries to produce parity.

Trump suggested that other drugmakers are ready to make similar agreements, lowering U.S. prices and expanding their manufacturing operations in the United States.

Incyte Corp. did not respond to a request for comment by publication time.

One Day Away

Sarah, Kitchin, and Mikaelian all expressed amazement at how quickly their lives were disrupted by chronic illness and how little their education, career, and financial resources insulated them from the impact it brought.

“It was kind of a stunner to me,” Kitchin said of her diagnosis. “I went from being a health care provider to a patient.”

For Mikaelian, the experience has brought the realization that much of our lives is beyond our control.

“It’s a constant feeling of insecurity,” she said. “I live with the impact of that every day.”

Sarah said, “One day away. Anyone is one bad day away from losing all of the effort that they have put into building their life.”