Coronavirus (COVID-19) and lupus

• 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. 
• March 17, 2020 - The CDC has recommended that people with serious underlying health conditions stay home and avoid other people as much as possible through March 30, 2020. Lupus is a serious underlying health condition that could lead to a compromised immune system. Please see Appendix A (on page 10) in this document from the CDC for a more detailed explanation of underlying health conditions that may increase the risk of serious illness from coronavirus.

• Resource: Read tips on coping with the stress and emotional strain of both the coronavirus itself and being isolated from my loved ones.
• Q&A: Read our questions and answers regarding Hydroxychloroquine (Plaquenil) and Coronavirus
• Video: Dr. Ashira Blazer, Assistant Professor of Medicine in the Division of Rheumatology 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 an update on information about the coronavirus and its impact on people with lupus. This update was recorded on March 20, 2020. Watch Now

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)

Communication with your health care team is important in the management of your lupus.

If you have a doctor appointment and aren’t sure if you should go to the office, first call your provider and ask what they recommend. If the appointment takes place in a standalone rheumatology clinic, your risk of exposure to infections will likely be less than in a large hospital setting.

If your clinic is in a large hospital, ask your provider if they recommend you come in earlier in the day to avoid people arriving for sick visits or if there is any way for you to do the appointment over the phone or via telehealth. If you need your prescription renewed, you can ask if that can be done over the phone.

If you’re going into the office for your appointment, ask your provider about the options in place to minimize your risk of exposure to people coming in for sick visits. For instance, you can ask if you need to wear a face mask when arriving or if one will be provided for you. Maintaining hand hygiene and social distancing while you are at your appointment is also effective in reducing your risk for infection.

Consider also discussing a lupus flare plan with your provider to understand best options for you if you begin to flare and need to be seen. You can discuss options to reduce your exposure to infections while managing your flare and seeking necessary medical care.

As someone with lupus, you’re at higher risk of getting an infection. You are also at higher risk of becoming seriously ill if you do get an infection. Travel puts large numbers of people, often from different countries around the world, in frequent and close contact with each other. This can promote the spread of infections, such as the coronavirus. The CDC is recommending that people at higher risk of serious illness avoid traveling by airplane and cruise ship. We urge you to consider and follow the CDC recommendations for your travel plans to ensure you protect your health during this outbreak.

The CDC is recommending that most people do not need face masks. The supplies of facemasks are limited and people who don’t need them should not use them. Every person’s situation is different, however, so if you are concerned you should check with your own doctor to find out what they recommend for you.

The CDC is recommending facemasks for people who are sick and the doctors and nurses who are caring for them. Doctors and nurses wear special facemasks when they are caring for the sick because they are in close contact for a long time.

Wearing a facemask will not protect you completely. You should still follow other recommendations such as washing your hands frequently.

If you’ve come in contact with someone who is positive for coronavirus, please follow CDC recommendations as well as your local health department’s recommendations for self-quarantine and reporting. If you experience a fever, cough, sneezing, and shortness of breath, report your symptoms to your health care provider – over the phone first!

Communication with your health care team is important for regular visits, through flares, and during sickness, so be sure to communicate your symptoms and status to all relevant health care providers so they can help you figure out the best course of action.

Social distancing is a public health measure that is recommended to reduce the passing of known infections, such as the coronavirus. This practice protects both you and members of your community. For work, communicate your requirements to your employer to see if there are ways to accommodate working from home. If possible, plan ahead by making arrangements to work from home in anticipation of the need for social distancing.

For everyday needs, such as grocery shopping, consider using a delivery service or asking a neighbor, family member, or friend to run those errands for you. For your medications, call your health care provider to see if it’s possible to get extra supply of your medication in case you need to stay home for a while.

While this time might feel isolating, it’s important to know that you are not alone. Calling friends, using video chatting services, and using other technology to stay in touch with friends and family can be very helpful to keep your spirits up. You can also take this opportunity to find new friends and support with LupusConnect, our online support community. 

Federal, state, and local leaders can declare a “state of emergency” whenever something out of the ordinary happens or has happened that may cause harm to large numbers of people. This includes natural and man-made disasters as well as outbreaks of serious illness. The state of emergency allows leaders to access resources and act quickly to enact policies to address the emergency. In most cases a state of emergency will not have any effect on your daily life. Check in frequently with your local health department for closings and warnings that may affect you.

We encourage people with lupus to keep checking other pharmacies in their area that they can safely get to or call on the phone, and reach out to larger pharmacies that offer delivery. If you continue to have trouble accessing your medication, we recommend you reach out to your physician to seek help and discuss a broader health plan during the coronavirus (COVID-19) pandemic.
 
We are continuing to work with the government, including Congress, the White House and state governments, and urging drug manufacturers to ensure people with lupus have access to the medications needed.

Though the Social Security Administration field office network is closed to the public due to the coronavirus, services are still available using the agency’s toll-free line: (800) 772-1213. Benefit claims, checking the status of an application or appeal, and requesting a replacement Social Security card can all be handled on the agency’s toll-free line or website. Payments to Social Security beneficiaries are not affected. 

Social Security field offices will only offer in-person services for the following:

• Reinstatement of benefits in dire circumstances
• Assistance to people with severe disabilities, blindness, or terminal illness
• Assistance to people in dire need of eligibility decisions for the Supplemental Security Income or Medicaid eligibility related to work status.

To access those in-person services, you must call in advance.
 

It’s important that you emphasize to your friends, colleagues, neighbors, and anyone who might come in frequent contact with you or your environment that lupus puts you at higher risk from infections like coronavirus. This will let them know to be very careful with their own hygiene and health habits to ensure they don’t put you at further risk. 

Create and practice a speech that briefly explains lupus as an autoimmune disorder that can prevent you from properly fighting off infections like coronavirus. You can write different versions of the speech that include different levels of detail, based on what you’re comfortable sharing with various people. If you need help putting together your speech, use this worksheet to guide you. Remember -- there’s no shame in advocating for yourself. In fact, it can save your life.

• Avoid people who are sick — including family members — even if it seems like their illness is not serious.
• Avoid crowds, especially in closed spaces with little air circulation. Your risk of exposure to respiratory illnesses (illnesses that affect the lungs and the ability to breathe), like the coronavirus, increases when you share crowded, enclosed spaces with other people who may be sick. 
• Avoid air travel and cruise ship travel. This kind of travel involves enclosed spaces where it would be hard to avoid germs.
• When you do go out in public, avoid handshakes, hugs, and other physical contact and wash your hands often.

• Stay home from school or work.
• Contact your doctor and ask about getting an extra supply of your medications in case there is an outbreak in your community and you need to stay home for a while. Please remember you should never stop taking your lupus medicines or skip or reduce doses without first talking to your doctor.
• Stock up on food and other necessary supplies, including over the counter medicines, tissues, etc.
• Consider ways to have items that you may need delivered to you through friends, family, or businesses.

• Wash your hands (tops, palms, and fingers) often with hot, soapy water for at least 20 seconds, especially after you have been out in public. Remember that surfaces—especially in bathrooms, on shared office equipment, on store counter tops, gas pump handles, any surface of the car, and in restaurants—can expose you to germs.
• Keep and use alcohol-based gel or wipes, both out in public and at home. 
• Avoid touching your eyes, nose, or mouth. Germs spread this way.
• Use the crook of your arm to shield coughs and sneezing. Do not use your hands or handkerchiefs as they carry moisture that spread viruses.

• Make sure you know how to contact your doctor to get help and information.
• Stay in touch with friends, family, and care providers. Let them know your situation and how to help you if you get sick.

• Watch for fever, cough, and shortness of breath.
• Call your doctor right away if you start to feel sick.