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COVID-19 Updates

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The first priority of the Lupus Research Alliance is to safeguard the health of our lupus community, in general and within the context of the COVID-19 global pandemic. We will keep you abreast of the most relevant news and all our efforts on your behalf in our dialogues with decision-makers in the federal, academic, clinical, and pharmaceutical arenas.

April 21
LRA Proudly Shares First Results from the COVID-19 Global Rheumatology Alliance Registry
The Lupus Research Alliance is proud to share that the COVID-19 Global Rheumatology Alliance, of which the organization is a sponsor, has gathered and published in record time data on 110 people with lupus or another rheumatic disease who also have COVID-19.

April 21
New Data Points Away from Hydroxychloroquine as COVID-19 Treatment
The most commonly prescribed treatment for lupus, hydroxychloroquine (best known as Plaquenil) is not effective for treating COVID-19 according to a new study of 368 hospitalized patients in United States Veteran Administration medical centers.

April 12
Letter from LRA to Top U.S. Health Officials

Today, the Lupus Research Alliance (LRA) Scientific Advisory Board Chair Dr. Gary Koretzky emailed top federal health officials a strong letter calling attention to concerns about availability of hydroxychloroquine for patients with systemic lupus erythematosus.

April 8
A Letter from LRA President Ken Farber on Plaquenil Shortage

LRA President Ken Farber wrote a letter addressing concerns from the lupus community about the potential shortage of hydroxychloroquine (Plaquenil).

April 7
Lupus Therapeutics, Affiliate of Lupus Research Alliance, Developing a Study Focused on Lupus Patients and COVID-19

Lupus Therapeutics, the clinical trial affiliate of the Lupus Research Alliance (LRA), announced it is embarking on a clinical study to assess the potential benefit of hydroxychloroquine and/or other lupus therapies in preventing or reducing the symptoms of COVID-19 in people with lupus.

April 4
COVID-19 Frequently Asked Questions: What You Should Know

Updated Q&A on common concerns about COVID-19 for people with lupus.

April 3
LRA Urges Congress to Ensure Lupus Patients Maintain Access to Hydroxychloroquine

LRA President Kenneth Farber wrote personally to House and Senate leaders asking that “any COVID-19 response and recovery package include provisions to ensure lupus patients maintain access to one of the most important medications approved to treat symptoms of this debilitating disease.”

April 3
Webcast: Lupus and COVID-19: What You Need to Know

The Lupus Research Alliance (LRA) hosted a live webcast April 2, 2020 on COVID-19 for people with lupus that you won’t want to miss – so click here to view the full video recording.

March 31
The U.S. Department of Health and Human Services Accepts Donations of Hydroxychloroquine as Possible Treatments for COVID-19 Patients
statement issued March 29 by the U.S. Department of Health and Human Services (HHS) announced that millions of donated doses of hydroxychloroquine sulfate and chloroquine phosphate had been accepted into the Strategic National Stockpile.

March 30
Actions to Preserve Hydroxychloroquine (Plaquenil) Supply

The rheumatology community has been in discussions with the U.S. Food and Drug Administration and many pharmaceutical companies about the potential shortage of hydroxychloroquine (brand name Plaquenil) in the COVID-19 epidemic, and we are seeing much progress to increase its production and availability.

March 26
Lupus Research Alliance Puts Plaquenil (Hydroxychloroquine) Shortage into Perspective for Lupus Community
The Lupus Research Alliance (LRA) continues to watch rapidly changing developments regarding COVID-19 and is closely monitoring the policies and actions of the federal government, healthcare agencies, medical organizations and the pharmaceutical industry on behalf of people with lupus.

March 23
Message from LRA President & CEO on COVID-19 and Lupus
The Lupus Research Alliance is working on your behalf with the federal government and healthcare agencies, and we promise to bring you important and relevant updates.

March 19
Hydroxychloroquine: Common Lupus Drug in Testing for COVID-19
As the COVID-19 pandemic continues to expand, researchers across the globe are hard at work investigating options for new therapies.

March 18
A Message from LRA President & CEO
The Lupus Research Alliance is consulting with top lupus clinicians and scientists in monitoring the situation posed by the spread of the SARS coronavirus (SARS-CoV-2) often referred to as COVID-19, across the world and committed to doing everything we can on your behalf.

To stay informed with lupus news click here

 

What You Should Know

In December 2019, a new virus called SARS-COV-2 was identified in Wuhan, China. This virus was found to cause a severe respiratory illness in patients which was later named after the type of virus that caused it and the year it was identified (coronavirus disease 2019 or COVID-19).

People with lupus are predisposed (at greater risk) to infections because of their disease as well as the medications they take to manage it. Click here for information from the U.S. Centers for Disease Control and Prevention (CDC), the American College of Rheumatology and other resources.

People with lupus are considered immunocompromised and so could be at greater risk for infections in general because of their underlying disease itself and some of the medications they take to treat lupus.

Click here for information from the CDC for people who are at risk.

People taking immunosuppressive medications are considered to be immunocompromised and so could be at greater risk for infections in general. It’s best to consult with your healthcare professional for specific recommendations. You should not stop or alter your medications without consulting with your rheumatologist first. Not all people with lupus take immunosuppressive medications.

Currently, there is no specific data on the virus causing COVID-19 in patients with lupus. Thus, the rate and the severity of the infection in lupus patients is not yet known.

The CDC recommends that people at high risk:

  • Stay home and avoid crowds as much as possible to further reduce your risk of being exposed. Also avoid non-essential travel.
  • Have supplies on hand, including medications you normally take.
  • When going out in public, keep away from others who are sick, limit close contact and wash hands often.

The CDC notes that reported illnesses have ranged from mild symptoms to severe illness and death for confirmed coronavirus disease 2019 (COVID-19) cases. According to the CDC, the following symptoms may appear 2-14 days after exposure.*

  • Fever
  • Cough
  • Shortness of breath

  • Difficulty breathing or shortness of breath
  • Persistent pain or pressure in the chest
  • New confusion or inability to arouse
  • Bluish lips or face

This list does not include every possible symptom. Please consult your health care provider for any other symptoms that are severe or of concern.

For people who are immunocompromised, which would include those with lupus, the CDC recommends:

  • Stay home and avoid crowds as much as possible to further reduce your risk of being exposed.
  • Have supplies on hand, including medications your normally take.
  • When going out in public, keep away from others who are sick, limit close contact and wash hands often.
  • Avoid non-essential travel.

The CDC also recommends that everyone take the following steps to prevent infection:

  • Avoid close contact with people who are sick
  • Avoid touching eyes, nose and mouth with unwashed hands
  • Wash hands often with soap and water for at least 20 seconds
  • Use an alcohol-based hand sanitizer when not near soap and water
  • Clean and disinfect areas that are often touched
  • Follow CDC’s recommendations for using a facemask. The CDC updated its recommendation on April 3 advising that when going outside, people who are well as well as those who are sick should wear a facemask to protect themselves from respiratory diseases, including COVID-19.

The CDC and other experts in rheumatic diseases recommend that people call their health care provider If they develop a fever, shortness of breath or a cough.

According to the CDC, anyone who thinks they may have symptoms of COVID-19 should:

  • Stay home when sick
  • Call their doctor or emergency room in advance of a visit and follow instructions.
  • Wear a facemask when you are around other people and before you enter a health care provider’s office
  • As much as possible, stay in a specific “sick room” and away from other people in your home. Use a separate bathroom, if available.
  • Limit contact with pets & animals like you would people.
  • Limit movement in the community
  • Limit visitors to caregivers
  • Cover coughs and sneezes
  • Clean hands often as recommended by the CDC above in Question 6
  • Avoid sharing personal household items like dishes, bedding, etc.

Yes. A drug commonly used for lupus, hydroxychloroquine (Plaquenil) has been shown in preliminary studies and anecdotally to be effective in treating COVID-19.

Additional treatments being studied include the antibiotic azithromycin in combination with hydroxychloroquine, and another similar anti-malarial drug chloroquine as well as an experimental antiviral called remdesivir. Genentech, a Member of the Roche Group, is launching a Phase III trial to assess its marketed arthritis drug Actemra® (tocilizumab) as a treatment for adults with severe COVID-19. Regeneron Pharmaceuticals, Inc. and Sanofi have initiated test trials of their arthritis drug Kevzara as a potential treatment for severe symptoms of COVID-19. WuXi Biologics and Vir Biotechnology announce collaboration to develop monoclonal antibodies to treat the disease.

Numerous other approaches are being studied as potential treatments.

Scientists do not yet know whether Plaquenil will be helpful in treating COVID-19.  Scientists are currently running both lab experiments and clinical trials to further investigate how Plaquenil works.

All patients should follow the guidelines from their health care provider.  It is not recommended to make any changes to their treatment plan without first speaking to their provider.

In consulting with top lupus physicians and reviewing the scientific literature, the LRA wants to reassure people with lupus that not taking Plaquenil or taking a lower dose for a short period of time is concerning but not cause for alarm. Our scientific advisors recommend talking with your physician about the situation and possible alternatives.

Speak to your health care provider before making any changes to your current treatment plan.

Click here for more information about COVID-19 from the Lupus Research Alliance.

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