Lupus Encyclopedia

Agenda

Community Resources & How to Navigate Them Successfully 
10:10–10:45 a.m. CDT (11:10 EDT)
Andrew Robinson, MSW, LMSW
Heartland Chapter Patient Navigator
Our Patient Navigator will provide an overview of the resources that are available in the community and how to best access those resources. He will discuss resource assistance for insurance, utilities, transportation, prescriptions, and others. He will also share resources and programs available through the Heartland Chapter.

Bringing Lupus Nephritis Out of the Shadows
10:45–11:30 a.m. 
Donald E. Thomas, Jr., M.D., FACP, FACR
Associate Professor of Medicine at the Uniformed Services 
University of the Health Sciences and a Rheumatologist at 
Arthritis and Pain of Prince George’s County, Maryland
Join us and ALL IN™ for a virtual discussion featuring Dr. Thomas about lupus and lupus nephritis. The presentation and Q & A  session are brought to you by Aurinia Pharma U.S., Inc. 

COVID-19 Vaccines & Lupus Update
11:30 a.m.–12:00 p.m.
Alfred H. Kim, MD, PhD
Co-Director, Lupus Clinic at Washington University, Assistant 
Professor of Medicine, Division of Rheumatology, Washington 
University School of Medicine
Dr. Kim will provide an update on the Washington University School of Medicine trial evaluating the safety and effectiveness of COVID-19 vaccines in people taking immunosuppressives.

Closing the Gap on Health Disparities
12:30–1:15 p.m. 
Ashira Blazer, MD, MSCI
Assistant Professor of Medicine, Division of Rheumatology, NYU Langone Medical Center Bellevue Arthritis Clinic
Lupus disproportionately affects women of color, particularly black women. The implicit and explicit bias within the healthcare system may prevent them from receiving a timely diagnosis and the best care possible. Dr. Blazer will discuss ways to close this gap through education, awareness, and advocacy.

Managing Your Lupus: How You Can Take a More Active Role & Meditation Exercise
1:15–2:00 p.m.
Arnita Christie, RN, BSN, MS Patient Engagement Liaison at GSK
Learn how you can take an active role in managing your lupus. You will learn more about the disease and how it affects your body, resources that can help you monitor your symptoms, how to communicate with your healthcare team, and the steps you can take to control lupus. Arnita will end with a guided meditation exercise. The presentation and Q & A Session are brought to you by GSK Us in Lupus.

Each session includes time for Q & A

QUESTION: How effective is just one COVID-19 vaccine if you did not get the second?

ANSWER: 82%

Type of study? A Centers for Disease Study

Where? 33 sites in 25 states (U.S. study)

Who? Health Care Provider recipients of Pfizer and Moderna vaccines

Results? One vaccine offered an 82% protection rate (Pfizer, Moderna)

94% for 2 doses. This similar to what we saw in the clinical trials

How about people with lupus, Sjogren's and other autoimmune diseases?

- They were not studied
- However, there are active studies being done at the NIH, Johns Hopkins, etc
      - If you live near Bethesda, MD, call the NIH nurses at 301-435-4489 and 301-451-4990; tell them Dr. Thomas sent you

- If you have an autoimmune disorder, especially if you are on immunosuppressant therapy, you are at higher risk of bad outcomes from COVID-19 infection.
- It is imperative you get vaccinated
- Make sure to stop your immunosuppressants appropriately for vaccination (but ask your doctor 1st to check)
     Here is a link on how to stop meds for the vaccines: 

https://www.lupusencyclopedia.com/blog/what-to-do-with-your-immunosuppressant-drugs-to-enhance-vaccine-responses

- If you get vaccinated, pretend you are as vulnerable as if you did not get vaccinated
      - Still practice social distancing
     - Ignore the CDC guidance for others who are vaccinated... i.e. still wear your masks and socially distance from everyone and plead the unvaccinated to just stay away from you (I always worry about my patients)

https://t.co/uQhUmjSsRd


REFERENCE: ACR, COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Developed by the ACR COVID-19 Vaccine Clinical Guidance Task Force.

​Pilishvili T, Fleming-Dutra KE, Farrar JL, et al. Interim Estimates of Vaccine Effectiveness of Pfizer-BioNTech and Moderna COVID-19 Vaccines Among Health Care Personnel — 33 U.S. Sites, January–March 2021. MMWR Morb Mortal Wkly Rep. ePub: 14 May 2021. DOI: http://dx.doi.org/10.15585/mmwr.mm7020e2external icon.
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BAD FINDINGS FROM THE STUDY

Rheumatic disease patients at highest risk for death after infected with COVID-19 (listed in order)
(these results will be given in odds ratios.
To figure out how to word this (odds ratio findings):
Subtract 1 from the number, move the decimal point 2 to the right, then say "___ greater odds of dying from COVID-19."
For example, for an 80 year old with a rheumatic disease, they have a 518% greater odds of dying from COVID-19. A man with a rheumatic disease has a 68% greater odds of dying from COVID-19 infection than a woman does.")

     - Age >75 years old, OR 6.18
     - Rituximab (Rituxan) treatment, OR 4.04
     - Sulfasalazine treatment, OR 3.60 (see commentary below)
     - Age 66-75, OR 3.00
     - Immunosuppressant treatments listed below, OR 2.22
                 (tacrolimus, mycophenolate, cyclosporine, cyclophosphamide, azathioprine)
     - Not on a disease modifying agent immunosuppressant, OR 2.11 (compared to patients on methotrexate)
     - Moderate to high disease activity, OR 1.87 (compared to patients in remission and low disease activity)
     - High blood pressure plus heart disease, history of stroke, or hardening of the arteries, OR 1.89
     - Prednisone more than 10 mg daily (or more than 8 mg methylprednisolone), OR 1.69 (compared to no steroids)
     - Chronic lung disease (like COPD, asthma, interstitial lung disease, pulmonary fibrosis), OR 1.68
     - Men, OR 1.46 (compared to women)

United Kingdom had the highest death rate followed by Germany

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Commentary about sulfasalazine (SSZ): Do not take away from this that SSZ increases deaths from COVID-19. SSZ is often prescribed by rheumatologists to sicker patients who are at higher risk for infections in the first place. For example, there were more smokers in the SSZ group. SSZ does not suppress the immune system. Also, SSZ is a weak drug (most often used to treat rheumatoid arthritis). Patients on just SSZ are less likely to be in remission or low disease activity (and therefore at higher risk of death from a COVID-19 infection). I suspect that this is an "association" and not a "causality."
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POSITIVE FINDINGS FROM THE STUDY

     - Hydroxychloroquine (Plaquenil) and belimumab (Benlysta) treatments were not associated with higher death
    - TNF inhibitor, leflunomide, abatacept (Orencia), tocilizumab treatments were not associated with higher death 
     - The United States had the lowest death rate of all countries in the study
          - After the US, countries (in order) of lowest death rates = Germany, then France, then Spain

BOTTOM LINE AND WHAT YOU SHOULD DO TO PROTECT YOURSELF:

- It is most important to keep your lupus under control. Do NOT stop any medications.
- Abide by all nondrug ways to lower lupus disease activity so you don't need as many steroids.
- Work hard with your doctor to control your disease better so you can lower your steroid dose. 
- Get vaccinated against COVID-19!
- Ask everyone around you to get vaccinated (the cocoon strategy)
- Even after vaccination, abide by all isolation, separation, social distancing strategies


Reference: Strangfeld A, Schäfer M, Gianfrancesco MA, et al. Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry. Annals of the Rheumatic Diseases Published Online First: 27 January 2021. doi: 10.1136/annrheumdis-2020-219498