Without medication to manage her plaque psoriasis, Jennifer Brown's face, scalp, trunk and neck periodically become covered in painful red, flaky patches so dry they crack and bleed.
She has gotten relief from medications, but they come at a high price. For a while she was on Humira, made by AbbVie, with an average retail price of roughly $8,600 for two monthly injections. When that drug stopped working for her, Brown's doctor switched her to a different drug. Today she is using another injectable, Skyrizi, also by AbbVie, which costs about $36,000 for two quarterly injections -- nearly 40% more annually than Humira.
The pharmaceutical company offers an assistance program to help consumers like Brown pay their share of the drug, and that has helped her cover her copayments. However, she faces the possibility of higher drug costs under a federal rule finalized this spring by the Trump administration.
The rule, an annual directive that sets health plan standards for 2021, permits employers and insurers not to apply drug company copayment assistance toward enrollees' deductibles and out-of-pocket maximums for any drug. That means only payments made by the patients themselves would factor into the calculations to reach those spending targets and could make individuals responsible for thousands of dollars in drug costs.
Advocates for consumers with chronic conditions say the rule will make it harder for patients with conditions such as cancer and multiple sclerosis who rely on very expensive drugs to afford them.
"I understand that the administration doesn't want to encourage patients to take higher-priced drugs," said Carl Schmid, executive director of the HIV + Hepatitis Policy Institute. "But ... these are people who have HIV and other chronic conditions who take drugs that don't have generics."
Patient advocates had hoped the administration would allow employers and insurers to apply these restrictions only if a patient was taking a brand-name drug that had an appropriate generic alternative. In the rule that set standards for 2020, the administration initially seemed to take that approach. But, faced with criticism by employers and insurers, it said last summer that it would reconsider the position.
Drug company programs that provide copayment assistance to consumers have long been controversial. Employers and insurers say they encourage people to take expensive brand-name drugs instead of equally effective but cheaper generics.
Consumer advocates counter that many of the drugs consumers take for chronic conditions have no alternative. Research has shown that generics exist for about half of the drugs that offer copayment assistance.
Drugs to treat patients with hemophilia cost an average $275,000 annually, said Kollet Koulianos, senior director of payer relations at the National Hemophilia Foundation. There are no generic alternatives.