Coverage for medications used to treat rare diseases varies widely across health plans sold through the Patient Protection and Affordable Care Act exchanges, according to a study published in the Journal of Managed Care & Specialty Pharmacy.
Healthcare business advisory and research company Avalere Health conducted the study, which was funded by Novartis Pharmaceuticals. Avalere analyzed coverage for 11 drugs used to treat rare diseases (such as Huntington disease, sickle cell anemia and hydatidosis) among bronze- and silver-level exchange plans in the 15 largest states.
The study shows that the plans analyzed covered the 11 drugs 65 percent of the time overall, although coverage varied considerably across different plans and medications. For instance, plan use of utilization management (including prior authorization and/or step therapy) ranged from 6 percent of all plans for Albenza, which is used to treat hydatidosis, to nearly 75 percent for Xenazine (Huntington disease).
Furthermore, bronze plans were generally less likely to cover drugs for rare conditions. For instance, only 40 percent of the bronze plans studied offered coverage for the chemotherapy drug Votrient, compared with almost 77 percent of silver plans.
Additionally, the study revealed the process of selecting a plan with adequate medication coverage can be complicated for patients with rare diseases because some plans include drugs that are typically physician administered in their medical rather than pharmacy benefits and therefore don't list them in formularies.
"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, the study’s lead author and senior vice president at Avalere Health.