Rising prescription copays drop adherence, spike mortality, research shows

When Adria Goldman Gross went to the pharmacy counter, she was surprised to see that the copay for one of her medications more than tripled.

What had cost her $11 out of pocket had jumped to $35. Gross found out that she would only be charged $16 if she bypassed her insurance coverage, paid the cash price and used a drug discount coupon through GoodRx.

"These prices are crazy—they have really taken advantage of us," said Gross, a patient advocate and owner of MedWise Insurance Advocacy. "I know people who cut pills in half so they don't use as much. If people can't take their medication, they will wind up in the hospital."

Gross is working with several patients who have run into similar problems. In one case, a patient was paying $50 a month for cancer treatment, and that skyrocketed to $750 a month, she said. Some people will go to extreme lengths, like purchasing drugs from Canada or Mexico, to work around exorbitant prices, Gross said.

While Gross was able to navigate the system and still afford her medication, not all are as fortunate. Rising out-of-pocket prescription prices are one of several obstacles that can unravel treatment plans, which can come at a major cost to individuals and the healthcare system.

Patients' higher cost-sharing burden for medication can prove fatal, a new working paper found. A $10.40 increase in out-of-pocket costs per prescription was associated with a 22.6% drop in consumption and a 32.7% increase in monthly mortality rates, an analysis of more than 358,000 relatively healthy 65-year-old Medicare beneficiaries found.

"When we raise prices, they mess with people's ability to make good decisions about their health," said Ziad Obermeyer, co-author of the study and associate professor of health policy and management at the University of California at Berkeley. "Those decisions lead to more people dying—health costs need to be priced into these cost-sharing policies."

Ed Schoonveld, a principal at consultancy ZS Associates, said he was shocked by the drop in consumption and increase in mortality.

"This is certainly one reason we need to seriously consider the impact of copays," he said.

The researchers focused on beneficiaries who fell into the Medicare Part D coverage gap known as the "donut hole," where patients are responsible for the full cost of their drugs between certain spending thresholds. Legislative changes have incrementally narrowed that gap, which fully closed in 2020.

In an example in the working paper, a Medicare beneficiary paid 25% of the price of their branded drugs until they reached $2,510 in total annual out-of-pocket spending. The patient fell into the donut hole and had to pay for the full cost until they hit $5,726, after which they were responsible for a 5% copay.

Obermeyer was struck by the finding that the highest-risk patients were not filling their medication after prices jumped. Those most vulnerable to a heart attack and stroke cut back more on statins and anti-hypertensives than lower-risk patients—irrespective of socioeconomic status. The riskiest one-third of patients were 280.6% more likely to drop cardiovascular drugs than the bottom two-thirds; there were similar results for those at high risk of diabetic and pulmonary complications.

Rather than cutting back on one or two drugs, there was a big cohort that stopped filling most if not all of their prescriptions as copays went up, Obermeyer said.

"That fact that this was also happening in high-income ZIP codes does fly in the face of the economics and research that found that people who need the prescription the most and can afford it should be the most likely to fill it," he said.

Drug list prices continue to increase every year. As health insurers and employers pay more, they often pass those costs to consumers in the form of higher premiums, deductibles and copayments.

Pharmaceutical manufacturers hiked the list price of a record 832 drugs in January—nearly 200 more than January 2020 and the highest since at least 2014, when GoodRx started tracking the data. All but 10 were branded drugs and 175 of those were specialty drugs, according to the report.

List prices increased by an average 4.6% in January, said Tori Marsh, the author of the report and director of research for GoodRx, which helps consumers find lower prices on medicines at pharmacies.

"This is the largest amount we have seen in years," she said. "Most list price increases end up trickling down to patients in the form of higher cash and net prices, which is especially important for those who have high deductibles and the uninsured. These price increases are very likely to block some patients from affording their medication, and can lead to lower adherence, higher downstream costs and higher comorbidity and mortality rates."

Half of the medications that saw price hikes followed price increases in 2019 and 2020, according to the report. That includes widely used, expensive medications that have no cheaper generic alternatives like Humira, a biologic that treats rheumatoid arthritis and psoriasis. Humira's list price has grown 21% from 2019 to 2021, which has helped AbbVie yield around $130 billion in sales from 2010 to 2019. The company holds dozens of patents for the drug, granting it exclusive marketing privileges. The first biosimilar isn't expected to hit the market until 2023.

GoodRx researchers expected price increases might slow due to the COVID-19 pandemic, but that didn't happen, Marsh said.

"This was par for the course—it happens every January," she said. "For many of these specialty drugs that don't have generic alternatives, patients have had to prioritize rent or food over their medication or vice versa."

Nearly a third of America's $3.8 trillion annual healthcare bill is related to inpatient care while pharmaceutical spending only accounts for about a tenth. Some have criticized the focus on drug prices given that dichotomy.

"Over the last 20 years, drugs have almost been at a constant 12% to 13% of total healthcare spending—they're part of the problem but not the remaining 88%," Schoonveld said. "We need a more holistic assessment, not just on drug costs alone."

Still, each sector is interconnected. Some research has shown that higher out-of-pocket prescription costs, for instance, can deter spending on other healthcare services like physician visits. If a patient forgoes a regular checkup and misses early signs of a disease, that could lead to more expensive hospital admissions.

Thus, there needs to be a more holistic view of healthcare spending, industry observers said.

"It is odd that we treat all healthcare costs the same way," Obermeyer said.

When it comes to drug spending, Congress has explored—to little avail—policies involving drug importation, allowing Medicare to negotiate with drugmakers, outcomes-based pricing and tying Medicare drug prices to those in other wealthy countries.

While there has been some pricing manipulation, breakthrough drugs are going to continue to demand a high price, Schoonveld said, adding that prices are bound to go down as more competitors enter the market. In the meantime, payers and providers need to work together to analyze the long-term data on drug treatments and related outcomes, he said.

"If there is a treatment that costs $100,000 a year, you need to make sure it is covered in an appropriate way," Schoonveld said. "As a society we need to make sure we have the right kind of insurance elements so patients are not faced with an impossible decision."

Obermeyer and his co-authors, Harvard economist Amitabh Chandra and Harvard research assistant Evan Flack, proposed aligning copays with efficacy to increase adherence and reduce disparities. Patients could be steered toward more effective treatments in a value-based insurance design where proven drugs like anti-hypertensives are given zero or even negative copays while treatment with ambiguous benefits like proton pump inhibitors are assigned high copays, they said.

"Cost-sharing schemes are put in place to improve the efficiency of healthcare by empowering people to be educated consumers," Obermeyer said. "But this study shows that is not the case."