One of the key goals of the Lupus Foundation of America (Foundation) is to ensure people with lupus have access to the care and treatments they need.  Recently, access to a few vital treatments has been challenging to obtain, specifically access to quinacrine, hydroxychloroquine, and Benlysta®.

Below are highlights on our priorities for improving access:

Quinacrine

In March 2016, an advisory committee to the Food and Drug Administration (FDA) voted against putting quinacrine on a drug list approved for compounding, which will restrict access to the treatment.  The Foundation has been a stakeholder in a coalition working with the FDA to demonstrate the significance of quinacrine to people who use it.  We will continue to advocate for a clear and simple pathway for physicians and people with lupus to maintain access.

Hydroxychloroquine

We have been tracking the cost and availability of hydroxychloroquine since June 2014 and advocating for affordable access.  Initially, there were widespread reports of shortages, yet once manufacturers had increased the supply the primary issue became the spike in price. We heard from many people who are unable to pay the high cost of the drug. We continue to address the issue by educating health insurance plans about the importance of hydroxychloroquine and how it is imperative for people to have affordable access.

Benlysta®

Recently, a few health insurance plans have restricted access to Benlysta® deeming it medically unnecessary even when it has been prescribed by a rheumatologist.  We help to educate health plans and remind them that Benlysta® is the only treatment that has ever been designed specifically for lupus and that treatment decisions should be made between physicians and their patients.