Paul O’Hara had a choice: Buy the $900 leukemia medication he needed for the month or put the money toward his daughter’s college enrollment fees.
The drug has kept O’Hara, now 55, healthy for 12 years since his diagnosis. But the high cost of his medication — a year’s supply is about $10,000 — has meant tough decisions for the Doylestown family. Their electricity has been shut off, they’ve missed mortgage payments and, once, had a foreclosure notice stapled to their front door. The decision several years ago between college payments and medication was among the most difficult O’Hara has faced.
“We weren’t looking at skipping vacations, it was just trying to get through day-to-day life,” O’Hara said.
O’Hara chose his daughter’s future and spent the next several months anxiously awaiting test results to find out whether the cancer had crept through while he skipped his meds.
Pennsylvania lawmakers are now considering creating a board tasked with finding out what patients have been wondering for years: Why are some medications so cripplingly expensive?
The pharmacy transparency review board, proposed in Senate Bill 579, would task a small group with gathering information about how drug prices are set and how profits are spent. The board would not have authority to regulate drug prices or keep a pharmaceutical company from raising prices, but is an important first step toward reining in rising drug prices that are straining families across the state, said Sen. Sharif Street, a Philadelphia Democrat who is co-sponsoring the bill with Erie Republican Sen. Daniel Laughlin. The data gathered would be used to recommend future legislation that could curtail price hikes.
“Out-of-control pharmaceutical prices does put people in a situation of having to choose between medicine and food, or medicine and basic necessities,” Street said. “If the doctor is prescribing you lifesaving medicine and you can’t get it because of the price, that’s a problem.”
High drug prices disproportionately affect low-income families, but families of all income levels struggle to afford medication, according to a new report by Pennsylvania Health Access Network, a consumer advocacy group, and health analytics firm Altarum. The study surveyed 1,150 Pennsylvania adults between October and December.
Sixty percent of survey respondents earning less than $50,000 annually reported concern about medication affordability. So did 50% of respondents with an income between $50,000 and $100,000, as well as 30% of people earning more than $100,000 a year.
“Many prescription drugs are so expensive — with prices of hundreds or even thousands of dollars per month — that they remain out of reach for patients regardless of income,” said Antoinette Kraus, director of Pennsylvania Health Access Network. “This means people of all incomes are making decisions they shouldn’t have to make, like choosing between the cost of medication or paying for their rent, mortgage, utilities, or other basic necessities.”
About 20% of survey respondents said they either didn’t fill a prescription, cut pills in half, or skipped doses because of the medication’s cost, according to the study.
Both Republicans and Democrats who responded to the survey thought that drug companies charged too much for medication and want the government to do more to control rising prices.
Pharmaceutical companies raised prices on 832 drugs an average of 4.5% this past January, continuing a trend of bi-annual price hikes, according to an analysis by GoodRx, which tracks drug prices. The vast majority of those medications were brand-name drugs with no generic alternative.
Pharmaceutical companies say the prices they charge reflect the cost to manufacture medications and allow them to continue investing in research and development for new treatments.
“We’re all well-aware these pharmaceutical companies do provide research that provides life-saving medication. We want them to prosper and be able to continue their work — we just want to know how they arrived at these prices,” Laughlin said.
If approved, Pennsylvania would join several other states, including New York, California and Maryland, in taking steps to rein in drug prices.
Maryland established a pharmacy review board in 2019 that will have authority to limit how much the state’s employee health plan is willing to pay for medications it deems excessively expensive. The board is currently reviewing drug price trends and is expected to recommend specific drugs to target for price control, said Gerard Anderson, a professor of health policy and management at the Johns Hopkins University Bloomberg School of Public Health, who serves on the Maryland board.
Congress is also considering measures to stem rising drug prices, but it’s unclear whether any will become law.
“States are almost always the laboratory for the federal government. They move first, they take aggressive actions, we see what works and then the federal government follows,” Anderson said. “That’s the pattern we’re seeing with pharmaceutical spending. States are taking a variety of actions and the federal government will, hopefully, follow soon.”
O’Hara is eager to see change.
It’s been years since that summer when O’Hara decided to forgo his medication to send his oldest daughter to college. Everything worked out: He’s still cancer-free, both his daughters graduated college. This weekend, he will be installing a dishwasher in his oldest daughter’s home, a task that, 12 years ago, he wasn’t sure he’d ever do.
His leukemia medication is now being covered fully by his insurance plan, after a 2016 Pennsylvania law required insurers to cover oral pill versions of intravenous cancer medications.
But he still thinks about how he will pay for the medication if he has to switch insurance plans or drugs, or when he becomes eligible for Medicare, which does not currently require parity in cancer drug coverage.
And he worries about the many other families still making choices between food, electricity, a child’s education, and a needed medication that no one should have to make.