Coronavirus (COVID-19) and lupus
Updated: May 15, 2020
The most up-to-date health information on the COVID-19 pandemic for people with lupus.
Here, you'll find:
- the most recent news
- the steps that the Lupus Foundation of America is taking to protect the health and availability of hydroxychloroquine for people with lupus
- resources that will help you stay both mentally and physically healthy during this uncertain time
- actions you can take to help
The situation is still changing rapidly. As soon as we are aware of a change in recommendations we will update our information. Your local health department is the best source of risk information for your area.
Week of May 10th - 16th
- May 15 - The CDC has released advice for people who are at higher risk of serious illness from the coronavirus because they have compromised immune systems. Some people with lupus may have compromised immune systems because of the medications they take to control their disease. Read the CDC guidance here.
- May 12 - We've accomplished so much this spring. We put together an overview of our advocacy actions over the last couple of months.
Week of May 3rd - 9th
- May 4 - Using recommendations from the CDC, we put together a list of what you can do to protect yourself when your state starts lifting restrictions.
Week of April 26th - May 2nd
- April 27 - The CDC has updated its information on COVID-19 symptoms to include chills, shaking with chills, muscle pain, headaches, sore throat, and a loss of taste or smell. Read more about what to do if you get sick.
- April 26 - Continue to reduce stress and anxiety with 30-minute daily guided meditation sessions with Dr. Neda Gould. When: Monday, Wednesday and Friday at 12 PM and Tuesday and Thursday at 9 AM. Meeting ID: 747-490-420. Zoom link here.
Week of April 19th - 25th
- April 22 - The National Council on Aging (NCOA) has published an interview with experts including Lupus Foundation of America's president and CEO Stevan W. Gibson, which takes an objective look at the dangers of hydroxychloroquine misuse for older adults, and the shortages of medication as a byproduct of inaccurate information.
- April 20 - Analysis of initial data on lupus and COVID-19 from the Global Rheumatology Alliance is now available. Of the reported cases in the registry, 17% have lupus.
Week of April 12th - 18th
- April 16: The latest episode of our podcast, The Expert Series, covers mental health and wellness in this time of uncertainty. Listen now.
- April 15: In this video, Dr. Sam Lim, Chief of Rheumatology for Grady Health System in Atlanta, Georgia, provides an update about the COVID-19 pandemic and its impact on people with lupus.
Week of April 5th - April 11th
- April 9 - Read our new resource: What to do if you have coronavirus symptoms.
- April 9 - Travis Smith, Director of Government Relations for the Lupus Foundation of America, answers questions about supply and access to hydroxchloroquine and choloroqine for people with lupus. Watch the video.
- April 8 - We've identified several new resources for those people having trouble filling their Plaquenil prescriptions. Read the details.
- April 8 - We are proud to support the Global Rheumatology Alliance’s COVID-19 Registry. This important international effort will collect de-identified information from clinicians and people with rheumatic diseases, such as lupus.Read more and access the registry here.
- April 8, 2020 - The FAQ for lupus and the coronavirus has been updated with two questions about finances, and three new health questions. These questions are:
- How might the stimulus package impact me?
- I am afraid the coronavirus may impact my ability to financially support my lupus treatment. What can I do to protect myself?
- I go into a physician’s office to get Benlysta infusions. How do I stay safe while still making sure I get my medication?
- Do NSAIDs, like Ibuprofen, make coronavirus symptoms worse?
- Should I stop taking my ACE-I or ARB medication?
- April 6: The co-chairs of the Congressional Lupus Caucus and the Congressional Arthritis Caucus, joined by 49 other Representatives, submitted a letter to the White House Coronavirus Task Force urging action to ensure people with lupus have access to the drugs they need. More than 10,000 lupus advocates asked their Representative to sign onto the letter.
Week of March 29th - April 4th
- April 4 - New blog post: there is no evidence that taking hydroxychloroquine (Plaquenil) is effective in preventing a person from contracting the coronavirus (COVID-19). Read more.
- April 3 - We've collected a few of the updates for the past week, which you can read here: Coronavirus Prevention and Underlying Health Conditions Updates
- April 3 - Now you can find out what your state is doing to ensure people with lupus are able to access hydroxychloroquine and chloroquine while they are being investigated for use in treating COVID-19. We're tracking the actions of every state.
- April 1 - Watch the video of a conversation with Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations. He gives a status report on the Foundation's actions to date to ensure a supply of these drugs for people with lupus.
- April 1 - Take action! Ask your Representative to sign onto the letter urging them to ensure access to these drugs for people with lupus and rheumatoid arthritis.It only takes 60 seconds. Send the letter now.
- April 1 Five more questions and answers have been added to our Frequently Asked Questions: Coronavirus (COVID-19) and Lupus. These questions are:
- What should I do if I cannot reach my health care provider?
- I have discoid lupus. Am I still at a higher risk for negative outcomes if I am infected with the coronavirus?
- I am anxious that I will not be able to fill my prescription for hydroxychloroquine. Should I cut back on my dosage to make my prescription last longer?
- Is it true that hydroxycloroquine will keep working 45 days after I have stopped taking it?
- Why is the coronavirus more dangerous to people with lupus?
- What should I do if I cannot reach my health care provider?
- April 1 - New resource: Tips on what to do if you have a prescription for hydroxychloroquine or chloroquine and are experiencing difficulties getting your prescription filled.
- March 31 - FDA Recognizes Hydroxychloroquine and Chloroquine Shortages
- March 31 - 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. Read more about the positive responses we've been getting.
- March 30 - The U.S. Food and Drug Administration (FDA) issued an Emergency Use Authorization (EUA) to allow hydroxychloroquine and chloroquine for coronavirus COVID-19 treatment. Read more about what this means for people with lupus.
Week of March 22-28
- March 28 - Dr. Ashira Blazer, Rheumatologist at New York University's Langone Medical Center joined us for a Facebook Live video to answer all of the most recent questions. Watch the recorded video.
- March 27 - The Lupus Foundation of America in partnership with the Arthritis Foundation are urging state pharmacy boards and other important stakeholders involved with the drug supply chain to take immediate action to ensure the availability of hydroxychloroquine (Plaquenil) and chloroquine (Aralen) for people with lupus and rheumatoid arthritis. Read the letter.
- March 26 - Take action! Right now, as part of our newly-launched campaign to highlight the importance of hydroxychloroquine and chloroquine, #WithoutMyHCQ, we need you to add your voice to the fight and contact your members of Congress in support of the people with lupus who rely on these medications!
- March 24 - Our new resource looks to help you cope with the stress and emotional strain of both the coronavirus itself and being isolated from loved ones. Read more.
- March 24 - Three new frequently-asked questions have been added to the FAQ from our Health Educators on this page.These questions are:
- What should lupus patients do if their pharmacy runs out of HCQ/plaquenil?
- How are my disability benefits affected by coronavirus?
- How do I explain to people that lupus puts me at higher risk for serious complications from the coronavirus?
- March 23 - Read the joint statement by the Lupus Foundation of America, American College of Rheumatology, American Academy of Dermatology, and the Arthritis Foundation urging the White House Coronavirus Taks Force and nation's governors to ensure Hydroxychloroquine access during the COVID-19 crisis
- March 23 2020 - Statement: Lupus Foundation of America Urges Manufacturers of Hydroxychloroquine and Chloroquine to Ensure Supply to Treat Lupus
- March 21 2020 - The Lupus Foundation of America partnered with national patient organizations to submit a letter to the Congressional Leadership and the Administration calling for the implementation of needed patient protections that include ensuring people with lupus continue to have access to hyrdroxychloroquine (HCQ). The Foundation was responsible for adding language about the needs of the lupus community to this letter. We continue to work in partnership with other patient and provider organizations to explore additional ways in which the patient community can work with government and other stakeholders to preserve access to needed care and treatments.
- March 21 - Read our questions and answers regarding Hydroxychloroquine (Plaquenil) and Coronavirus.
- March 20 - Read our statement regarding access to hydroxychloroquine (Plaquenil) for people with lupus.
Some of our chapters have been posting more local information for the people with lupus in their regions. Follow the links below to their coronavirus-related pages, or find your region or chapter.
- Heartland (Missouri, Southern Illinois, & Eastern Kansas)
- Philadelphia Tri-State (Delaware, New Jersey and Southern Pennsylvania)
- Texas Gulf Coast
- Texas Lone Star (North, central and west Texas, including Dallas/Fort Worth, San Antonio, Austin, El Paso, Lubbock, and surrounding areas)
The need for coronavirus information for people with lupus has become more urgent by the day. And every day, we’re searching for the answers for you.
Your questions about COVID-19, answered by our health educators.
The latest information on hydroxychloroquine availability, shortages, and prescriptions.
If you suspect you have COVID-19 or have been exposed to it, we urge you to follow these recommendations.
- Tips for refilling your hydroxychloroquine (Plaquenil) prescription
- Are people with lupus protected against COVID-19?
- Resources to help you access hydroxychloroquine (Plaquenil)
Video (newest first)
- April 15: Dr. Sam Lim, Chief of Rheumatology for Grady Health System in Atlanta, Georgia, provides an update about the COVID-19 pandemic and its impact on people with lupus.
- April 9: Travis Smith, Director of Government Relations for the Lupus Foundation of America, updates recent efforts to expand the supply and access to hydroxchloroquine and choloroqine for people with lupus
- April 1: Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations, gives a status report on our actions to date to ensure a supply of hydroxychloroquine for people with lupus.
- March 28: Dr. Ashira Blazer gives an update about the coronavirus and its impact on people with lupus
- March 20: Dr. Ashira Blazer, Assistant Professor of Medicine in the Division of Rheumatology at New York University's Langone Medical Center, provides initial information about the coronavirus and its impact on people with lupus.
From the begining of the outbreak, the coronavirus has been an extra concern for people with lupus. New uncertainty around the availability Hydroxychloroquine (Plaequenil) and Chloroquine (Aralen) has brought a new, urgent need to take action to help people with lupus.
Find out what your state is doing to ensure people with lupus are able to access HCQ and CQ while they are being investigated for use in treating COVID-19.
Watch this video with Travis Smith, Director of Government Relations for the Lupus Foundation of America, about the actions that we've taken to ensure the availability of hydroxychloroquine.
Feelings of loneliness and helplessness are common among people with lupus, and those feelings are only more common during the coronavirus outbreak. But there are actions you can take to protect your health, your peace of mind, and your rights.
The threat the infection poses for people with lupus is higher than the general population. Read a list of steps you can take to help prevent coronavirus.
There are a number of healthy, effective ways to manage your stress and anxiety levels so you can maintain a positive outlook during the pandemic.
As part of our campaign to highlight the importance of hydroxychloroquine and chloroquine, #WithoutMyHCQ, we need you to contact your members of Congress in support of the people with lupus who rely on these medications!
We’re your partner in navigating the unprecedented challenges of lupus and COVID-19. Help us continue the fight to protect the health of people impacted by lupus, our families and communities.Donate Now