The diagnosis — Stage IV lung cancer — was shocking enough for Stephanie Donaldson. She’d never smoked. She’d just got a clean bill of health a few weeks earlier.

But the cost of the drug that Donaldson’s doctor ordered brought a second jolt: Eight daily chemotherapy pills of Alecensa would cost hundreds of dollars a day that her insurance said it wouldn’t cover, the 75-year-old Detroit woman recalled.

“I called my sister and my family and said ‘I’m going to have to sell everything.’” Donaldson said. “I have to. I have to take these pills to live.”

Now, a new statewide program — the brainchild of Michigan pharmacists — will allow cancer patients unable to afford or access cancer drugs to obtain medications that might otherwise go to waste. Under the program, people can donate no-longer-needed cancer drugs or supplies to the repository, allowing them to be repurposed for patients in need. It marks a dramatic break from past practice, when expensive were typically — and often needlessly — destroyed, flushed down toilets or dumped in landfills.

Under the state law that enabled the repository, priority is given to patients without insurance, followed by those who are insured by Medicare and Medicaid, and finally those who are covered by commercial insurance,

The appetite for such a program is significant in places where large numbers of cancer patients face financial hardship from treatment, even when they have insurance, and are sometimes forced to skip appointments or pills to make their medications go further.

The Ann Arbor-based YesRx repository establishes a network of pharmacists that can accept cancer drug donations from individuals, pharmacies, manufacturers and distributors, then re-prescribe them to cancer patients requiring the same dosage.

In doing so, Michigan joins about a dozen other states running statewide repositories, according to the American Society of Clinical Oncology. Until recently, ASCO had opposed such repositories, fearing drugs could be adulterated or made ineffective by incorrect storage. Now, ASCO and others have reversed their stand, concluding that any risks are “worth bearing … given the cost and access challenges for many patients with cancer.”

Donors can turn in unused, unopened cancer medications and supplies, such as anti-nausea medicine, to doctors, pharmacists and other providers participating in the repository system. The medications must have at least six months left before their expiration.

Once accepted, the drugs are keyed into a database, accessible to doctors and pharmacists around the state who can send them to patients. A patient would pay no more than a $5 handling fee for using the repository, under state law.

“The idea is to get the drugs shipped to the patient as soon as we can,” said Farah Jalloul, state pharmacy emergency preparedness coordinator at the Michigan Pharmacists Association and one of the founders of YesRx.

YesRx will allow patients to worry about “one less thing,” said Dr. Andy Shuman, a head and neck cancer surgeon at the University of Michigan Medical School.

Shuman has testified in Congress about drug shortages, and he’s the chief of the clinical ethics service at U-M’s Center for Bioethics and Social Sciences in Medicine.

“When someone’s facing a life-threatening diagnosis like cancer, the last thing they want to think about is how they’re going to be able to put food on the table and whether they need to prioritize their cancer treatment over other financial needs as a family,” he told Bridge Michigan.

It’s difficult to know exactly how many families face cancer-related financial harm, despite multiple research studies.

Insurance coverage, cost of treatment and stage of cancer are all factors that can contribute to financial stress. Beyond the price of medications, radiation and hospitalizations can exact a toll, as can lost income when a patient can no longer work, said Theresa Hastert, an epidemiologist and oncology professor at Wayne State University who researches the socioeconomic effects of access to cancer drugs.

The bills can catch up to even those who might have otherwise been financially stable.

“When someone is diagnosed, some of the financial effects don’t happen for several months in a lot of cases,” she said.

“You get those first bills and you think ‘This is fine. I’m managing it. It’s okay,’” she said. “But then you realize those copays start adding up.”

Hastert’s research in metro Detroit underscores the impact income can have on cancer treatment:

• Among nearly half of cancer 994 survivors in the Detroit area — 46% — reported that they lost income, went into debt, were forced to dip into assets to pay for care or borrow from friends or family to cover cancer-related costs, in a 2019 study in the peer-reviewed Journal of Cancer Survivorship. The prevalence was higher among Black patients (50.3%) compared to white patients (41%).

The same study found that 17.6% of patients reported limiting their care, such as skipping doctor’s appointments or missing doses of medicine, due to cost. Again, the prevalence was higher among Black survivors, compared to their white counterparts.

• One in three Black survivors (36%) reported at least one “social need” during treatment, such as food insecurity, housing instability, lack of transportation, or utility shut-offs, according to a 2021 study published by the American Cancer Society.
• Among Black survivors, younger adults face the steepest hardship, Hastert and fellow researchers concluded in a 2022 study published by the peer-reviewed journal, Cancer Epidemiology, Biomarkers & Prevention.

Health providers also reported having little time to discuss the expense of cancer treatments with patients. According to Hastert, one clinician told researchers, “I suppose it’s important because if I prescribe something and then they can’t do it, what’s the point of prescribing it?“

Cost is a dark shadow in the white-knuckle journey through cancer diagnosis and treatment, several patients and family members told Bridge.

It cost $10,000 or more a month for the chemotherapy that prolonged the life of Bloomfield Hills resident John Carolin for four years, enough time to see his daughter marry. Insurance covered only some costs, recalled his daughter, Megan Landry. After her father’s diagnosis, Landry took a job at the American Cancer Society, helping cancer centers across the state expand prevention and screening services.

“But it was really the only treatment option for him,” she said.

Donaldson, the Detroit woman, said her oncologist ultimately was able to find a pharmacy and financial help to provide the pills free of charge, but only after multiple calls to her insurance company and pharmacies.

Those calls, though, take doctors’ time away from bedside, said Jalloul. With the repository network, a doctor’s staff — social workers, financial navigators or pharmacists — can check the network database to determine whether extra medications are available, said Emily Mackler, director of the Pharmacists Optimizing Oncology Excellence in Michigan (POEM) and YesRx cofounder.

“If I hadn’t advocated for myself,” said Donaldson, a retiree and advocate for southeast Michigan seniors, “I would have died.”

Supporters of repository programs say they not only help patients in need, they help reduce the volume of potentially harmful drugs that end up in the state’s waterways and disposal systems.

Drug waste is massive, in part, because cancer patients routinely change treatment plans as a strategy to stay ahead of advancing cancer, making their existing drug supplies unneeded.

One 2016 study estimated that $2.8 billion in infusion cancer drugs — that is, those given intravenously — were wasted each year in the U.S. because patients received more than they could use. Other times, cancer drugs become available when a patient dies during treatment.

A study of oral cancer medications found that every time an oral cancer drug was discontinued or its dosage level reduced, an average of $4,290 worth of drug was wasted per patient, according to the peer-reviewed Journal of the American Medical Association.

It was one of the reasons Katie Sias, an oncology pharmacist, helped establish a regional repository at the Midland-based MyMichigan Health hospital system at the end of 2021. The repository is one of nine regional repositories around the state that serve patients within their own systems.

“A lot of patients really hated the fact that they had to dispose of these medicines,” Sias told Bridge.

Molly Marco of Royal Oak might have had to forego her life-saving treatment had it not been for her parents.

She was going through treatment for brain cancer in 2016, and in the fog after surgery she recalled the regular mail drops of medical bills — costs for ambulance rides and medication and who knows what else, she said.

“I was spoiled at the time,” Marco told Bridge.

Working at her family’s business selling eyeglass lenses, she barely made above minimum wage, and she had a basic insurance plan with high cost-sharing, she said. It was her mother who pulled out the checkbook when the bills were too much.

“I could pay some of the bills, maybe up to about $300,” she said. “What I remember is having to ask her more than once, ‘Can you take care of this bill?’”

And if her cancer returns?

“I’m not sure what I’ll do,” Marco said.

The statewide repository arrived more than 15 years after a law set its foundation — a delay for which there seems no explanation.

A 2006 law directed the state Board of Pharmacy of the state health department to “establish and maintain” a Cancer Drug Repository Program. The YesRx program, announced last month, builds on efforts of the hospital-based pharmacists.

Of the nine regional repositories, seven are part of Munson Healthcare. The other two are operated by MyMichigan’s Medical Center in Midland and the Cancer & Hematology Centers of Western Michigan.

Those repositories are designed to serve patients within their systems rather than the general public.

In contrast, the public can donate to the statewide repository by contacting YesRx. And they can find out what drugs are available at this link.

Even those with insurance may face sizable bills during treatment due to insurers requiring a percentage for coinsurance, she said. A 20% co-insurance of a $50,000 drug is $10,000, for example, said Aimee Cloud, clinical manager at Munson’s Infusion Pharmacy and liaison to the repositories at Munson hospitals.

The Traverse City-based Munson Infusion Pharmacy began the effort in 2021 as part of a pharmacist-led oral chemotherapy education program. It urged patients to turn in unused oral chemotherapy for proper disposal. The response was overwhelming, Cloud said.

“We were getting not only partial bottles, but full bottles” of oral chemotherapy and supplies, she said. “We were surprised at the waste.”

The repository has been able to dispense 38 prescriptions worth over $490,000, she said.

Eventually, the statewide drug repository may expand to collect and share other prescription drugs in addition to those for cancer — enabled by a separate 2012 Michigan law.