Hydroxychloroquine (Plaquenil) and chloroquine (Aralen) are medications that tens of thousands of Americans living with lupus rely on to prevent disability, illness or early death. Both medications have emerged as potential treatments for the coronavirus (COVID-19) and clinical trials are underway to determine their safety and effectiveness for use in treating COVID-19. While it is important to investigate their potential use for this purpose, it is critical that people with lupus never lose access to them.

Unfortunately, many people with lupus nationwide are unable to access these much-needed treatments altogether or they are facing other significant obstacles filling their prescriptions.  

From the moment the Lupus Foundation of America (LFA) became aware of these challenges, we sprang into action and began implementing extensive advocacy and communications strategies to address them as fast as possible, including conducting outreach to all of the different stakeholders that can help to ensure the availability of hydroxychloroquine and chloroquine for people with lupus. 

As we’ve led the way in actively working to address these challenges, we have received positive responses from federal and state officials and other key stakeholders, including the manufacturers of hydroxychloroquine and chloroquine, state boards of pharmacy, health plans, pharmacies and pharmacists, and physicians – all of who can play a role in helping to ensure people with lupus have access to the medications they need.   

For example, several of the manufacturers of hydroxychloroquine and chloroquine we have reached out to have publicly announced they are increasing drug supplies or making commitments to donate the medications to the federal government in order to increase their supply and availability, and to mitigate shortages. This includes Teva Pharmaceutical Industries, Mylan, Novartis/Sandoz, Bayer Pharmaceuticals, Amneal and others. 

We also have encouraged the government to work with the pharmaceutical industry to increase supply. On Sunday, March 29, the U.S. Food and Drug Administration (FDA) issued an Emergency Use Authorization to allow hydroxychloroquine and chloroquine donated to the U.S. government to be used in treating COVID-19. The U.S. Department of Health and Human Services (HHS) followed with a statement specifically noting that this action will help ensure these drugs are available to people with lupus.  While it’s still unclear what the full impact of the government’s action will be, it is a step in the right direction to address supply of these medications. 

Members of Congress also are taking action as Congress passed legislation that includes key provisions to allow patients to receive emergency supplies of their medications, as recommended by the Centers for Disease Control and Prevention. We are working with members of Congress to take additional steps in support of the lupus community, a community that is speaking out loud and clear.

Last week, we issued a call to action that empowered lupus advocates to contact Congress and urge them to address the challenges faced by the lupus community.  Within just a few days, lupus advocates sent more than 115,000 emails to their members of Congress!  

We also have received positive feedback and have seen action in response to outreach we conducted last week when we sent a joint letter to state boards of pharmacy, the 50 state governors, insurance companies and other key stakeholders. We are pleased to report that more than 15 states (as of 3.30.20) have taken action to help preserve access for people with lupus. Others, such as organizations representing the nation’s health plans, pharmacies and pharmaceutical industry have echoed our calls to mitigate shortages and advance policies that meet the needs of people with lupus and others who depend on these medications.  

It is clear that our message is being heard, but there is much more that needs to be done.  In the days and weeks ahead, we will continue to work hard to address all of the barriers people with lupus are facing during the coronavirus pandemic, and we will attack them from every direction so that no person with lupus has to go without the care and medications they need.   

To see the actions we have taken to address access to hydroxychloroquine and chloroquine and for the latest updates on COVID-19 and lupus, visit lupus.org/coronavirus.