Off-label drugs for the treatment of lupus symptoms represents the standard of care for people with lupus, but current regulations make it difficult for doctors and manufacturers to communicate. Read Sandra C. Raymond's remarks now.
Hydroxychloroquine Update - October 2015
by Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator
Recently, there’s been growing concern over generic drug price increases in the news and on social media. We at the Lupus Foundation of America have felt and been enveloped in this wave of concern. Our organization has been tracking the cost and availability of hydroxychloroquine (Plaquenil®) since June 2014. Initially, there were widespread reports of shortages and difficulty accessing the drug, but now the primary issue is the spike in price.
The Lupus Foundation of America is aware that many of our constituents are unable to afford the high cost of the generic form of the drug, hydroxychloroquine. We are concerned that constituents may stop taking the drug or ration the drug without their doctor’s knowledge. This is can be very dangerous.
It is extremely important that lupus patients take hydroxychloroquine (Plaquenil®) as prescribed. Medication adherence prevents disease flares and other complications.
“Hydroxychloroquine is the mainstay of lupus therapy,” according to Michelle Petri, MD, MPH. “It prevents half of lupus flares, reduces renal and CNS lupus, reduces blood clots in half, reduces future seizures, diabetes and LDL cholesterol, and improves survival. I call it ‘lupus health insurance.’”
Currently, there is one brand name drug manufacturer producing Plaquenil® and four generic drug manufacturers that are producing hydroxychloroquine. All four generic drug manufacturers are no longer reporting a shortage and are meeting demand. However, we have had several reports from people who are unable to pay the high cost of the drug. As a result, some individuals are no longer taking it or rationing their medication. We urge all people with lupus to speak with their physician if they are having difficulty accessing the drug.
Here are some actions people with lupus can take to obtain the drug at a more affordable price:
- Speak to the prescribing physician about possibly finding a lower-cost alternative treatment option.
- File an appeal with your insurance company if the drug has increased in price from last year’s plan. This usually has to do with moving the drug up a tier in the formularies. The insurance company may agree to move the drug back down to its previous plan year’s tier, which can drop the cost. You can also speak to your insurance company to see if switching to a different plan is possible.
- Compare prices. Some people have noted that the brand name drug, Plaquenil®, is cheaper than the generic form of the drug, hydroxychloroquine, with their insurance. In addition, constituents can compare the prices at various retail pharmacies to find their drug at a lower cost. There are a few websites, like GoodRx, that can assist with this.
- A few websites with resources may also be of assistance:
The Lupus Foundation of America is sharing this information because we want to ensure that our constituents can access and afford the medications that they need. We are in the process of contacting the generic manufacturers that produce hydroxychloroquine to better understand why there was a shortage and now a significant price increase. Our Advocacy and Government Relations department is pursuing several avenues to address the problem.
We believe it is important for us to represent the lupus community and ensure that everyone understands why the prices of their drugs have increased so dramatically. If you have questions or need any information, please contact our health educators through this form, or by calling 1-800-558-0121.