The Lupus Foundation of America has a goal to give people with lupus improved access to the treatments and care that they need for their health condition.
Unfortunately, recent situations demonstrate that patients don’t have adequate access to crucial treatments, such as hydroxychloroquine, quinacrine and Benlysta. This is disconcerting for health care professionals as well as for patients with lupus.
In March, the U.S. Food and Drug Administration (FDA) held an advisory committee meeting to vote against quinacrine. Now, the drug is not included in a list for compounding, significantly limiting the access people have to this treatment. The Lupus Foundation is an important partner in encouraging the FDA to reconsider its decision about quinacrine.
Another treatment, hydroxychloroquine, is very expensive. Starting in June 2014, there have been widespread shortages, but manufacturers continue to raise the price of the supplies. The Lupus Foundation has been watching and tracking the price of the drug, encouraging patients to understand their health insurance plans.
Lately, several health insurance plans have limited patients’ access to Benlysta. Insurance companies claim that it is not medically necessary, even though rheumatologists prescribe it. The Lupus Foundation aims to education the companies that the treatment is the only one of its kind that is specially for lupus.
