Aug. 10, 2016

Access to Treatments

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:

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.

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.

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.

Related Stories

General News | Jun. 01, 2016

Lupus Groups to Host Patient-Focused Drug Development Meeting

Lupus organizations announce groundbreaking collaborative initiative to inform lupus drug development.

General News | Feb. 04, 2014

NIH Announces Partnership to Accelerate Development of New Treatments for Lupus & Other Diseases

The Lupus Foundation of America will partner with the Foundation for the National Institutes of Health (FNIH) to support a new $230 million, five-year initiative that will accelerate the ability to develop new medicines for lupus and other diverse and complex diseases.