Exchange plans lack key drug coverage for rare diseases

Most plans available on health insurance exchanges don't include coverage for key drugs that treat rare diseases, according to a study from Avalere Health published in the Journal of Managed Care and Specialty Pharmacy.

After analyzing coverage rates of 11 drugs for diseases including Huntington's, sickle cell anemia and parathyroid carcinoma, Avalere determined that exchange plans include these medications 65 percent of the time.

"This analysis highlights the need for increased data transparency in the exchanges so that patients with rare diseases can make more informed plan selections," said Sandy Robinson, Avalere's senior vice president and the study's lead author.

However, the study showed that the level of coverage widely varies. Bronze plans, for example, are less likely to cover the identified drugs than silver plans. Just 40 percent of bronze plans included a medication for certain carcinomas, Votrient, while almost 77 percent of silver plans covered the drug.

And plans' use of steps such as prior authorization and/or step therapy differed greatly--from 6 percent of plans for hydatidosis drugs to 75 percent of plans for Huntington's disease.

Insurers also frequently placed these rare disease drugs on the highest tier of their four-tier formularies, which usually require consumers to use coinsurance to pay for them. The coinsurance rates for silver plans vary from 10 percent to 50 percent, while bronze plans' coinsurance rates range from 15 percent to 50 percent.

A separate study has shown that coinsurance and other cost-sharing methods across the four metal categories have been inconsistent, FierceHealthPayer previously reported.

To learn more:
- here's the Avalere study