On June 16, 2008, I received the shocking news that I had stage IV pancreatic cancer and further told I would, in all likelihood, live just three to six months. Over the next 18 months, I fought cancer and became determined to prevent anyone else from hearing the news I heard. This determination led to the creation of the Purple Iris Foundation. I am a 16-year-and-counting survivor committed to helping others.

At the Purple Iris Foundation we raise awareness, provide support (monthly online chats) and give hope to Maine individuals and families affected by cancer. We provide navigation for patients in need of financial and other resources, as well as patient assistance grants, monthly grocery gift cards and gas cards to low-income Mainers battling cancer.

The ability to access affordable medicines is crucial to a patient’s fight against cancer. And I know firsthand how difficult dealing with insurance companies and hospital bills throughout that journey can be.

Mainers, people all over the country, with limited financial resources, astonishing deductibles and high copays have a challenging time getting the care they need.

A photo of a full-page print ad on the 340B drug pricing program that was placed in the Washington Post Tuesday, July 19, 2022, by the Pharmaceutical Researchers & Manufacturers of America. (Photo: Business Wire)

Importantly, there are programs to help vulnerable patients obtain affordable medicines, including the 340B drug program. The federal drug program allows so-called covered entities to purchase drugs at discounted prices from drug manufacturers and those savings can be passed along to vulnerable patients. Some of these covered entities include STD clinics, federally qualified health centers, family planning clinics and hospitals.

The 340B program has significantly expanded over the past decade and, unfortunately, that growth has had limited-to-no transparency. In 2013, sales of 340B drugs were just over $7 billion. In 2023, they rose to $66 billion.

Of particular concern is the opaque role large hospitals have played in the program’s expansion. In Minnesota, the Department of Health recently released a report that describes entities in the state collecting more than $630 million from the program. Big hospital systems account for nearly 80% of the program while they only comprise 13% of the covered entities participating in the 340B program in Minnesota.

In addition to a lack of transparency, the expansion has not resulted in a decrease in patient costs but instead generated huge profits for large hospitals and retail pharmacy corporations like CVS and Walmart. Hospitals have exploited the program by marking up the prices of essential medicines, often charging patients thousands of dollars for drugs that in some instances only cost them pennies. A recent New York Times article details how hospitals billed state health plans in North Carolina 85% more for cancer medications.

The same article describes how a cancer patient in New Mexico decided to seek care from a different non-340B hospital because the 340B hospital that initially treated her overcharged her for her medicines. The drug used to treat her metastatic breast cancer had a list price of $2,700 but the patient’s insurance was charged more than $22,000. While her insurer covered $10,000 she was on the hook for the remaining balance of $12,000. After she switched to a non-340B free-standing oncology clinic her insurance was billed about a third less for her treatment and she owed nothing.

Rural states like Maine need the 340B program. There are many covered entities using the program as it was designed: to help vulnerable patients. However, expanding the program without safeguards as proposed, and not knowing how much large hospitals are marking up drugs, fails to benefit the intended 340B patients.

I am hopeful that policymakers can find compromise, enabling safety-net facilities to continue using the program in a responsible manner.