Coronavirus (COVID-19) and lupus
Updated: April 8, 2020
The most up-to-date health information on the coronavirus outbreak 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; and resources that will help you stay both mentally and physically healthy during this uncertain time.
If you have lupus, you’re at higher risk for infections like the coronavirus, also known as COVID-19. Some people with lupus may also be at risk for more serious complications from catching the coronavirus.
The situation is 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.
Latest Updates
April 9, 2020 - Read our new resource: What to do if you have coronavirus symptoms.
April 9, 2020 - 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, 2020 - We've identified a new resource for those people having trouble filling their Plaquenil prescriptions: online pharmacy Honeybee Health. Read the details.
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 8, 2020 - 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 4, 2020 - 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, 2020 - 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, 2020 - New resource: Tips on what to do if you have a prescription for hydroxychloroquine or chloroquine and are experiencing difficulties getting your prescription filled.
- April 8, 2020 - We've identified a new resource for those people having trouble filling their Plaquenil prescriptions: online pharmacy Honeybee Health. Read the details.
- April 8, 2020 - 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 4, 2020 - 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, 2020 - 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, 2020 - 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, 2020 - 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, 2020 - 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, 2020 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, 2020 - 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, 2020 - FDA Recognizes Hydroxychloroquine and Chloroquine Shortages
- March 31, 2020 - 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, 2020 - 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.
- March 28, 2020 - 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, 2020 - 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, 2020 - 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, 2020 - 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, 2020 - 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, 2020 - 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, 2020 - Read our questions and answers regarding Hydroxychloroquine (Plaquenil) and Coronavirus.
- March 20, 2020 - Read our statement regarding access to hydroxychloroquine (Plaquenil) for people with lupus.
Resources
- Hydroxychloroquine (Plaquenil) and Coronavirus (COVID-19) Q&A
- Frequently Asked Questions: Coronavirus (COVID-19) and Lupus
- Coronavirus, stress, and mental health
- Steps to prevent coronavirus for people with lupus
- Tips for refilling your hydroxychloroquine (Plaquenil) prescription
- What to do if you have coronavirus symptoms
Blog posts (newest first)
- New Resource Identified to Access Hydroxychloroquine (Plaquenil): Honeybee Health (Posted April 8)
- Are People with Lupus Protected Against COVID-19? (Posted Apr 1)
- LFA Receiving Positive Responses from Key Stakeholders Impacting Hydroxychlorquine Supply during Coronavirus Pandemic (Posted March 31)
- What the coronavirus means for people with lupus (Posted Feb 28)
Advocacy & Action
- State-by-state list of what each state is doing to ensure people with lupus are able to access hydroxychloroquine and chloroquine.
- Send a letter to ask your Representative to ensure access to hydroxychloroquine for people with lupus
Video
- April 9 - Travis Smith, Director of Government Relations for the Lupus Foundation of America, provides an update on recent efforts to expand the supply and access to hydroxchloroquine and choloroqine for people with lupus. He also discusses a new online resource developed to provide state-by-state actions and policies for fulfilling prescriptions of the medications.
- April 1 - Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations, gives a status report on the Foundation's actions to date to ensure a supply of these drugs for people with lupus.
- March 28 - Dr. Ashira Blazer, Assistant Professor of Medicine, Division of Rheumatology at New York Universities Langone Medical Center, talks about the coronavirus and its impact on people with lupus.
- March 20 - An earlier conversation with Dr. Ashira Blazer.
News (newest first)
- April 3, 2020 Coronavirus Prevention and Underlying Health Conditions Updates
- March 30, 2020 FDA Issues Emergency Authorization of Hydroxychloroquine Amid Coronavirus Pandemic
- March 26, 2020 State Pharmacy Boards Urged to Ensure Availability of Critical Lupus Medicines
- March 23, 2020 Joint Statement Urging White House Coronavirus Task Force, the leadership of the U.S. Congress and Nation’s Governors to Ensure Hydroxychloroquine Access During 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 Letter to Congress: Potential Aid for Patient and Community-Based Organizations Impacted by Coronavirus
- March 21, 2020 Lupus Foundation of America urges Congress to Maintain Supply of Hydroxychloroquine for People with Lupus
- March 20, 2020 Coronavirus Update: 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.
- Florida
- Georgia
- Heartland (Missouri, Southern Illinois, & Eastern Kansas)
- Indiana
- Ohio
- 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)
What You Need to Know
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.
Hydroxychloroquine (Plaquenil) and Coronavirus (COVID-19) Q&A
There Coronavirus (COVID-19) has raised a lot of questions around many questions about Hydroxychloroquine (Plaquenil) and its availability for peope with lupus. Read all of the questions and their answers here.
Frequently Answered Questions From Our Health Educators
Our Health Educator Network—health-care professionals and lupus specialists who provide individualized answers—have seen their inquires triple in the last week. The following are questions they’ve been frequently asked and their answers.
Tips for refilling your hydroxychloroquine (Plaquenil) prescription
We've been getting a lot of questions dealing with the difficulty of getting prescriptions for hydroxychloroquine (Plaquenil) and chloroquine (Aralen) filled to treat lupus and other autoimmune diseases. We've compiled the questions and their answers to help you fill you prescriptions.
Read the tips to refill your HCQ prescription
Q&A With Dr. Ashira Blazer
Dr. Ashira Blazer, Rheumatologist at New York University's Langone Medical Center, and a member of the Lupus Foundation of America's multidisciplinary expert Medical-Scientific Advisory Council provides the answers to the most-asked questions about lupus and coronavirus. This update was recorded on March 28, 2020. View the previous update from March 20, 2020
What We're Doing For You
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.
Steps we've taken:
- April 3: We launched an advocacy campaign asking representatives to sign onto the letter urging them to ensure access to these drugs for people with lupus and rheumatoid arthritis.
- March 26: We launched a letter-writing campaign to congress to make sure they heard from about the importance of keeping Hydroxychloroquine available to people with lupus. As of March 28, over 150,000 letters have been sent!
- March 26: We urged State Pharmacy Boards to ensure availability of critical lupus medicines.
- March 23: We urged manufacturers of Hydroxychloroquine and Chloroquine to ensure supply to treat lupus.
- March 23: Along with the American College of Rheumatology, American Academy of Dermatology and Arthritis Foundation, we issued a joint statement urging White House Coronavirus Task Force, the leadership of the U.S. Congress and nation’s Governors to ensure hydroxychloroquine access.
State Action on Hydroxychloroquine and Chloroquine Access
We're keeping a list for you to 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.
More about our actions
In this video, Pat Wildman, Lupus Foundation of America Vice President for Advocacy & Government Relations, gives a status report on the Foundation's actions to date to ensure a supply of hydroxychloroquine (Plaquenil) and chloroquine (Aralen) for people with lupus.
What You Can Do
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.
Take Steps To Prevent Coronavirus
The threat the infection poses for people with lupus is higher than the general population. Using the Centers for Disease Control and Prevention (CDC) recommendations, we wrote a list of steps you can take to help prevent coronavirus.
Steps to Take to Prevent COVID-19
Take Action
Right now, as part of our 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!
Contact Your Members of Congress
Take Care of Your Mental Health
The outbreak of the coronavirus can bring about any number of negative feelings -- whether it’s about the health and safety of both you and your loved ones, your work status, medication supplies, or other fears. But there are a number of healthy, effective ways to manage your stress and anxiety levels so you can maintain a positive outlook.
Read: Coronavirus, stress, and mental health
Help Us In Our Fight
At the Lupus Foundation of America, people with lupus are at the forefront of everything we do—even more so during these unprecedented times. Requests for support and information have tripled over the last week, creating a need for more resources. Please consider making a generous donation, today, to ensure we can meet this increased demand to assist as many people with lupus, and their families, as possible.
Continue to check in with your local health department, the CDC, and Lupus.org for updated information and recommendations.
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