The prospect of paying a mind-boggling cost for prescription medication...

The prospect of paying a mind-boggling cost for prescription medication month after month is frightening and unsustainable. Credit: AP/Rich Pedroncelli

Falling ill in America is becoming increasingly unaffordable in a health care system that punishes the patient.

Insurance companies and middlemen have taken away protections against health care discrimination and crushing out-of-pocket costs for people with complex and chronic conditions. Not only does this increase costs across the health care system, it also deters efforts to improve health equity and patient outcomes.

According to one analysis, out-of-pocket costs for nonretail medicines reached $16 billion in 2020, up from $13 billion in 2015. Covered workers saw a whopping 212% increase in their average insurance deductibles from 2008 to 2018.

Faced with higher costs, patients often make difficult choices to make ends meet, and can stop taking their medications. Data shows that when out-of-pocket costs reach $75-$125, 40% of patients walk away from the pharmacy without their prescription.

But abandoning treatment can lead to worse health outcomes, which can increase costs for the entire health care system and, as a result, taxpayers, too.

The COVID-19 pandemic has only further strained the health and wallets of many vulnerable patients.

President Biden and Washington policymakers must ease the burden on patients with HIV, hepatitis, autoimmune diseases and other complex conditions for whom medication is critical. While Congress focuses on prescription drug costs, proposals like the Build Back Better Act fail to make drugs affordable. So where do we go from here?

The federal government should require insurers to count the value of copay assistance toward patients’ out-of-pocket costs — a decision 12 states have already made. Many patients rely on copay assistance to afford their medications, especially when no generic treatments are available. But health plans frequently rob them of that protection through "copay accumulator" policies that increase costs by not applying the value of copay assistance toward a patient’s annual deductible or out-of-pocket maximum. Once a patient exhausts their copay assistance, they discover they still have hundreds or even thousands of dollars due in out-of-pocket payments before their insurance coverage kicks in.

Washington can also follow the lead of states in establishing standard health plan options that include manageable copays and first dollar coverage of prescription drugs. Under these plans, patients would not have to first pay a high deductible to receive prescription drugs. Capping the amount paid out of pocket for a one-month supply of a single prescription eases the financial burden for patients.

Further, the White House and the federal Health and Human Services department can build on the intent of the Affordable Care Act by protecting patients against discrimination based on their health condition. The law makes clear that health insurers must not design benefits that discriminate against certain individuals by placing drugs for certain conditions on the highest drug tier or instituting step therapy requirements and other techniques that make it hard for patients to access their medications.

More than 100 organizations representing millions of patients recently sent two letters to the HHS secretary that demonstrate broad support for solutions to make prescription drugs more affordable. The White House, HHS and Congress must work with the patient community and recognize the challenges many patients and their families will continue to face if we do nothing.

The trends in treatment affordability have not only hurt patients but created downstream costs and ignored systemic health inequities. Protecting patients would help keep them squarely at the center of their own care.

This guest essay reflects the views of Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, and Molly Murray, president and CEO of the Autoimmune Association.

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