Getting You Through the COVID-19 Pandemic
We remain laser-focused on ensuring you have access to hydroxychlorquine and have the latest health information on COVID-19 and lupus.
Since the beginning days of the coronavirus pandemic, when hydroxychloroquine and chloroquine were identified as possible treatments for COVID-19, the Lupus Foundation of America has been working tirelessly to make sure supplies of these critical medications are available for their approved use to treat lupus. We directed our advocacy and communications efforts toward multiple touchpoints in the drug supply chain.
What is the Drug Supply Chain?
The Drug Supply Chain is the process of how a drug gets to you, the consumer. It begins with the manufacturing process, where drugs are made and then sold in bulk to wholesalers. Wholesalers supply the drugs to various retail and mail-order pharmacies and medical institutions that dispense them to consumers in response to doctors’ prescriptions.
There are a number of other stakeholders and factors that influence the flow of medications through the supply chain including state and federal regulations.
Ensuring People with Lupus Have Access to Life-saving Medications
The Lupus Foundation of America engaged the key stakeholders involved in the supply chain for hydroxychloroquine.
We communicated with 12 companies who manufacture hydroxychloroquine and/or chloroquine, to ensure drug production kept up with the need from people with lupus. And we continue to work with companies to distribute donated supplies of these medications.
Our team worked with large-scale distributors to ensure they were aware of the importance of hydroxychloroquine to the treatment of lupus.
Pharmacies and Compounders
We contacted major pharmacy chains and state and national pharmacy trade associations to educate them on the needs of people with lupus and to make sure they could get their prescriptions filled without delay. At the same time, we identified compounding pharmacies that can combine ingredients to manufacture smaller batches of medications such as hydroxychloroquine right in the pharmacy if people with lupus were unable to access it through their normal pharmacy.
Elected Officials and Government Agencies
Our government relations and advocacy team have a long history of working with key government officials and agency leaders. They have been in constant contact with all relevant public stakeholders to make sure every entity is doing everything possible to address the supply crisis. These entities include:
- The White House Coronavirus Task Force – We partnered with the Arthritis Foundation, American College of Rheumatology and American Academy of Dermatology on a joint letter to the White House Coronavirus Task Force, the leadership of the U.S. Congress and the nation’s governors
- The Congressional Lupus Caucus and other congressional leaders –We partnered with national patient organizations to submit a letter to the Congressional Leadership and the Administration, and worked with the cochairs of the Congressional Lupus Caucus and Congressional Arthritis Caucus on a Dear Colleague letter to the White House Coronavirus Task Force
- US Food and Drug Administration (FDA) –We ensured that the FDA recognized that both drugs were in shortage by encouraging manufacturers and pharmacies to report issues as they occurred, and FDA responded by adding them to the shortage database on March 31
- Centers for Medicare and Medicaid Services (CMS) – We actively engaged on CMS’ rule to loosen restrictions around Part B home infusions to ensure people with lupus can get the medications they need safely, and also working this issue on Capitol Hill
- State Boards of Pharmacies – We sent a joint letter to each state’s Board of Pharmacy, copying major pharmacy chains, insurance companies, and US governors, urging them to take action to address the shortage of HCQ and restrict its use for the treatment and prevention of COVID-19 to ensure supplies were available for people with lupus and to prohibit inappropriate prescribing and hoarding.
Providing Answers, Resources and Support
We immediately worked to provide the most up-to-date health information on the COVID-19 pandemic for people with lupus. We also quickly recognized the serious health risks people with lupus would face if access to life-saving medications were interrupted. We sprang into action to provide information, helpful resources and tips, and answers to questions to get our constituents through this crisis.
- Created a gateway COVID-19 resources page providing the most up-to-date health information and breaking developments impacting people with lupus, and included this information in Spanish
- Produced Q&A resources in various digital formats featuring lupus experts addressing the most urgent questions from our community
- Our experienced health educators took hundreds of calls and emails from people with lupus to provide individualized answers on how to navigate the COVID-19 crisis and HCQ shortage.
- Gave people with lupus a voice, providing them with a platform to contact their members of Congress and governors to take action in support of access to hydroxychloroquine for people with lupus, highlighted by our first advocacy alert on the HCQ issue that saw more than 40,000 advocates send over 125,000 emails to the Hill
- Worked directly with dozens of national and local media outlets on more than 70 news articles to educate the public on the impact the COVID-19 pandemic was having on people with lupus and access to their medications
- Created a state-by-state tracker identifying what actions state governments and other key stakeholders at the state level were taking to ensure access to hydroxychloroquine
- Identified online pharmacies that have available supplies of hydroxychloroquine and shared this information with the lupus community.
Remaining Ever Vigilant
The duration of this pandemic and its impact on our community remains unclear at this time. Rest assured, we remain on high alert and continue to take action to ensure you have access to the medications you need, and the resources required to get you through this crisis safely.
The Lupus Foundation of America has faithfully served people with lupus through many challenges during the 40+ years we have been fighting to end the brutal impact of lupus. With your support and engagement, we will continue to lead the charge until we get the job done and find a cure.