AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

Special Coverage: COVID-19 & AiArthritis
Brought to you by the International Foundation for AiArthritis

TOGETHER WE ARE STRONGER

AiArthritis Voices 360 Special Series: COVID-19 & AiArthritis

In the time of this global pandemic, we are faced with so many unknowns.  Information evolves daily, so what we knew last week may be outdated today. Research has begun, but is limited to anecdotal reports (personal testimony), which leaves our community with many questions and concerns. 


Experts are doing their best to provide advice, but even that varies per country,  individual recommendation, or viral spread. There are so many moving parts, but one thing stands strong - the commitment from nonprofits and other rheumatology stakeholders around the world who are uniting to ensure mixed messages are minimal, resources are accurate, treatments remain accessible, and research is reliable. 


To address the needs of our community, we have:

  • Added a COVID-19 Special Series to our existing AiArthritis Voices 360 talk show (thanks, in part, to Bristol Myers Squibb for a supporting grant);
  • Started a COVID-19 & AiArthritis Facebook Group;
  • Begun participating in three COVID-19 Registries (which YOU are invited to be part of, too);
  • In addition to joining a COVID-19 Vaccine Coalition, we have begun applying for several grants to improve vaccine education and research.
  • Established a COVID-19 & Vaccinations Hotline for you to submit your questions.
  • Started the Let's Talk: COVID, Vaccinations, and Shared-Decision Making project to help facilitate conversations about COVID, vaccination hesitation, and patient-doctor communication.
  • Invited other organizations and groups worldwide to share their COVID-19 specific resources with us, because together we are stronger and, together, we will prevail.


Join our COVID-19 & AiArthritis Facebook Group

COVID-19 & AiArthritis Hotline

Since our organization is led by people affected by AiArthritis diseases, we are in the trenches with others, like us, every day.  We are in online communities, we have friends also living with these diseases, and as result, we know there are  many questions, concerns, and mixed messages surrounding the vaccine.


In regards to the COVID-19, we aim to:

 

  • Help educate you about the latest updates, so you and your doctor can decide when (or if) you should take it .*
  • Provide an opportunity for you to continue to ask questions regarding COVID19 (including vaccinations, treatments) and receive the answers you need to help make those decisions.
  • Work with rheumatologists, nurses, and other stakeholders who advise patients about vaccines to promote consistent messaging.
  • Collaborate to improve research and policy activities that could improve outcomes for those living with AiArthritis diseases.
  • Share valuable and reliable resources about vaccines, including those from other organizations and health affiliates worldwide.

 


*It is largely accepted in the rheumatology community that vaccinations for AiArthritis patients are recommended. This, however, is dependent on your unique medical history and all decisions regarding the vaccine should be discussed between you and your physician.

Living with a rheumatic disease? Have a question about COVID -19?

Submit here - we will periodically update this page with as many answers as possible!

Vaccination Question

Resources from Around the Globe

We understand information changes daily. We are doing our best to ensure you have the most credible information possible. This first section lists the main landing pages for organizations that cover AiArthritis diseases, government, media, and rheumatology/expert sites. 

CDC Recommendations for Vaccinations in Immunocompromised Individuals

 New information relevant to our population on the CDC website

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AiArthritis Voices 360 Special Series: COVID-19 & AiArthritis

You can listen to all of the COVID-19 discussions right here on this site OR you can subscribe to AiArthritis Voices 360 where ever you listen to podcasts.  

Special Vaccine Episode with Dr. Al Kim, Dr. Vibeke Strand, Dr. Jeffrey Sparks and they sit "at the table" with patients Tiffany Westrich-Robertson and Kelly Conway

In this special episode, we will be diving deeper into the perceived barriers of vaccination from both a patient-perspective as well as that of the rheumatologist. How do we assess the benefits and risks of vaccination? What solutions are available to the AiArthritis community?

Listen to the Episode Now!

#HighRiskCOVID19 - Reality Check from Patients

Join Charis Hill & Kelly Conway - CLICK TO  LISTEN NOW!

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COVID-19 Vaccine Education and Equity Project Coalition

COVID-19 vaccines hold the best hope to get our lives and our economy back on track. But there are many unknowns - education, safety, and equity (fair access for all) will be key to that success.  Our organization has joined dozens of other groups, uniting across disease spectrums, to better understand challenges and to gain the knowledge necessary to help our community feel confident making their vaccination decision. 

COVID-19 Registries


Our organization and patient representatives are passionate about helping researchers understand our community needs in relationship to COVID-19. We have committed to joining three groups who are leading registry efforts:

 

  • COVID-19 Global Rheumatology Alliance.  In addition to participating as a supporting organization, our leadership is also involved in the behind-the-scenes research committees as patient liaisons and patient surveys.

 

  • FORWARD: National Data Bank.  Participating will provide valuable information to health care providers going forward to help make decisions about how to treat patients with rheumatic diseases who get COVID-19.   

 

  • The Arthritis & Rheumatic Disease COVID-19 Project. This  patient-powered study of the Autoimmune Research Collaborative will collect longitudinal data about autoimmune patient experiences with COVID-19 in the USA and Canada. 

 


SHOULD I STOP TAKING MY TREATMENTS
March 28th, 2020

The answer, in short, is NO, this is a decision that must be made between you and your doctor, based on any unique situation you are experiencing that may warrant a change in your treatment plan. What we do know is that these medications keep diseases under control and if uncontrolled many problems may arise, such as having disease activity heighten.  Given the complexity of balancing these considerations and the need for tailoring any response to the individual patient, all decisions need to be made by the treating rheumatologist or rheumatology professional in consultation with the patient in question.

SUPPORT & MENTAL HEALTH
April 2nd, 2020

If you live with AiArthritis diseases, there may be some things happening during this COVID-19 pandemic that you feel quite comfortable with - like staying home, social distancing, even wearing masks. At times, it may even feel good that others might actually start understanding what we go through as our existing normal (while they are dealing with a 'new normal'. But as part of the #HighRiskCOVID19 community, we have many questions and concerns about susceptibility, how COVID-19 may impact our health, and even if we will continue to have access to the treatments we need. Remember, at our organization we are people living with these diseases. We understand. So we recommend you join us on our new COVID-19 & AiArthritis Facebook group, where we will be there to talk to you and share more resources to help you navigate this uncharted territory. 
Featured links:
  • COVID-19 & AiArthritis: Join our new Facebook group today, ask questions, talk, get answers. Join now!
  • Psychology Today:  19 Ways to Support Your Mental Health During COVID-19. Learn more. 
  • Global Healthy Living Foundation/CreakyJoints: FREE COVID-19 Support Program for Chronic Disease Patients and Their Families Learn more.
Organizations
The resources provided by organizations aim to give information that may be specific to the diseases they cover. 

Alliance for Aging Research: Information to help older adults during the COVID-19 crisis. Learn more .


American Heart Association:  Information for heart patients during COVID-19. Provides tips staying safe while exercising and handling COVID-19 anxiety. Learn more. 


American Lung Association: Provides resources for online support communities, tips for protecting yourself and loved ones, when to get tested, information on masks and air pollution, and stories from those on the frontlines. Learn more.


Arthritis Consumer Experts/JointHealth: (Canada)  COVID-19: What it means for patients living with osteoarthritis and autoimmune forms of arthritis, mental health, and several links to Canadian resources. Learn more.


Arthritis Foundation USA: Stay in touch with the top experts and give you updates on this quick moving story, with a focus on what people with suppressed immune systems need to know. Coronavirus News


Arthritis Ireland: COVID-19 updates, information about COVID-19 including signs and symptoms, prevention tips, testing, and more. 


Autoimmune Association: Information about people with autoimmune diseases & COVID-19, important resources for the autoimmune community, and links to other autoimmune groups providing COVID-19 information to our community. Learn more.


Autoinflammatory Alliance: Link to official blog where you will find COVID-19 resources and statements from other nonprofits. Learn more.


Canadian Arthritis Patient Alliance (CAPA): Governed by people living with rheumatic diseases, CAPA has developed a list of evidence-based resources, information on medications, hydroxychloroquine, doctor visits and more. Learn more.


Caregiver Action Network (CAN): Tips for Family Caregivers and COVID-19. Learn more. 


Celiac Disease Foundation (USA): Here you will find information about celiac disease and coronavirus, COVID-19 symptoms, how to prepare, and more.


Chronic Care Policy Alliance (USA): This alliance works with state and regional chronic care policy networks to further good public policy on behalf of patients with chronic illnesses. Check out their Vaccination Guide. Learn more.


Creaky Joints/Global Healthy Living Foundation: Complete website section covering everything from patient questions to support, prevention, and up-to-date articles. Check out their Chronic Illness Patient’s Guide to Coronavirus. Learn more.  


Crohn’s & Colitis Foundation (USA): Here you will find information about COVID-19, key terms to know, symptoms of coronavirus, healthy practices, and testing information. Learn more.


European Patients Forum:   Includes resources related to their COVID-19 Resource Point, EPF Statements on COVID-19, and a patient perspective section. Learn more. 


FORWARD: National Data Bank for Rheumatic Diseases.   Visit FORWARD to participate in a short survey about COVID-19 in rheumatic diseases and other rheumatology-specific resources. Learn more. 


Global Genes: Government Updates, COVID-19 Education & Information, Financial Assistance, Virtual Networking, Support Services, Mental Health, Talking to Kids, At Home Teaching Resources, Diagnosis Treatments & Vaccines, Coverage & Benefits, Foundation Resources, Exercise, Entertainment. Learn more. 


Healthcare Ready: This landing page includes a United States and international measures and travel restrictions map, a state-by-state guide to getting Rx refills, and a separate resource page for individuals and patients. Learn more. 


International Alliance of Patients' Organizations: General Resource Hub to keep you informed on regional specific information and responses, peer reviewed journals, tips for managing anxiety and mental health, and free online training courses. Learn more.


Israeli Association for RMDs Patients: Collection of Q&A about arthritis and COVID19, Main landing page for COVID-19. Learn more. 


Lupus & Allied Diseases Association (LADA): Background on Coronavirus, recommendations for prevention, information on hydroxycholoroquine shortages, links to more resources. Learn more .  


Lupus Foundation of America: Find COVID-19 updates, FAQ, information about Hydroxychloroquine, and more. 


Lupus Research Alliance (USA): COVID-19 updates, information about Hydroxychloroquine, FAQ, and what you need to know about Lupus about COVID-19.  


The Myositis Association (USA): Current COVID-19 Information, Support, Sign on letters, Informational videos, Blogs. Learn more .


National Ankylosing Spondylitis Society:   Find information about assessing your risk, mental health, medicines and biologic therapy, work and benefits, FAQ, and staying well during isolation. Learn more.


National Infusion Center Association (USA): Here you will find the COVID-19 Toolkit, Resources, the Infusion Center Survey, and an infusion center locator to see if your center is open. Learn more.


National Rheumatoid Arthritis Society (UK) : Find information about what COVID-19 is, FAQ, official resource links, and be able to ask your own questions. Learn more.


Mind (UK): Here you can find information about the coronavirus and your wellbeing and resources for coping. Learn more.


The Scleroderma Foundation: Here you will find information and recommendations from the Scleroderma Foundation Medical & Scientific Advisory Board Leadership Committee and FAQ. Learn more.


The Sjögren’s Syndrome Foundation (SSF): In concert with their medical advisors, SSF is closely monitoring the coronavirus/COVID-19 and what the Foundation and our patients should be doing. Here you will find updates about coronavirus. Learn more.


US Pain Foundation: Highlight some current facts about COVID-19, sharing information for dealing about the effects of COVID-19, like treatment interruptions, financial hardship, and emotional stressors. Learn more.


Vasculitis Foundation: Videos “Voices from our Community”, guidance for social distancing, staying positive, Vasculitis and COVID-19 Q&A. Find the facts and more.


Versus Arthritis: Resources such as stay at home guidance, social distancing, tips for staying home, and a helpline: Learn more. 




If you are an organization and would like your landing page listed here, please email info@aiarthritis.org and put COVID-19 & AiArthritis Web Page in the Subject Line. 


Government
Although this is a global pandemic, each country - and even state or province - will have their own recommendations and restrictions. We encourage everyone to visit their local governing agency for complete information.  


Australian Government Department of Health: See the current COVID-19 status in Australia, keep up to date with news and media, learn the COVID-19 symptoms, get advice, and more.


Centers for Disease Control and Prevention (CDC) (USA): Main landing page for the CDC. Here you will find information on symptoms, what to do if you are sick, taking precautions and more. 


Centers for Medicare & Medicaid Services: Virtual Toolkit for those who work with the general public, Medicare beneficiaries, Clinicians, and additional guidance for those in a care setting. Learn more.


Food & Drug Administration (FDA) (USA): Main landing for the CDC. Find the latest COVID-19 information from the FDA. 


FDA for Patients & Caregivers: Resources to help address questions patients may have about FDA-regulated medical products (drugs, biologics, devices) and COVID-19. Learn more. 


GOV UK: Main landing for GOV.UK. See the latest announcements, how to protect yourself, information on employment/financial support, education, healthcare, travel, and more. 


Ministry of Health (Israel): Main landing for the Ministry of Health. Here you can find the latest updates for COVID-19 in Israel. 


National Health Council (USA): Overview of response legislation, contacts for your questions. Learn more. 


National Health Service UK (NHS): Main landing page for NHS. Here you can find advice for everyone regarding COVID-19, what to do if you need medical help, get pregnancy advice, and more. 


National Institutes of Health (NIH) (USA): Main COVID-19 landing page for NIH. Here you can find resources on symptoms, should you get tested, prevention, how it spreads, protect yourself, cleaning your home, a detailed disinfectant guide, and daily life and coping. Learn more. 


NIDirect Government Services (Northern Ireland): Main landing for NIDirect. Here you can find information on COVID-19, advice for vulnerable people, mental health and well-being, travel advice, information on education, benefits, business. Learn more. 


Occupational Safety and Health Administration (OSHA)- U.S. Department of Labor: Main COVID-19 landing page for OSHA. Find information about COVID-19 for workers and employers including hazard recognition, standards, medical information, and control and prevention.  Learn more.


Scottish Government: Main landing page for coronavirus for the Scottish Government. Here you can learn about how to protect yourself, see health advice, Scottish test numbers, advice, and more.


State Health Departments: Concentrated search for your state's health departments and state-specific information on COVID-19. Learn more.


USA GOV: Main landing page for coronavirus for the USA GOV. Here you can learn what the federal government is doing in response in COVID-19 in specific areas such as health and safety, travel, money, education, and more.


US Environmental Protections Agency (EPA): Main landing page for COVID-19 for the EPA. Find information on disinfectants and drinking water. Learn more.


Welsh Government: Main landing page for the Welsh Government. See the latest updates about coronavirus, guidance to staying home, health advice, information on business, education, travel, housing, and more!


World Health Organization (WHO): Here you can find the latest updates on COVID-19, statistics on confirmed cases, deaths, and countries where COVID-19 is, resources on what you need to know, information on research and development, and more. 




Media/Medical News


British Medical Journal (BMJ) : Main page for BMJ. Here you can find resources from clinicians, the latest coverage from the BMJ on coronavirus, and other important COVID-19 journals . Learn more.


COVID Act Now (USA): Main landing page for COVID Act Now. Look at the map and select your state to see detailed projections to see why we must act now. Learn more. 


ENCA (eNews Channel Africa): Here you can see daily updates about COVID-19 in Africa. Learn more. 


Everyday Health: Here you will find information about how contracting COVID-19 may affect rheumatoid arthritis, if having RA puts you at higher risk for the virus, extra safety precautions you should be taking and more. Learn more. 


Psychology Today: Psychology Today main Coronavirus Disease page. Find information on coronavirus, information on dealing with anxiety and fear amidst a pandemic, and more information.  Learn more. 



Medical Cannabis


Americans for Safe Access: Main COVID-19 page for Americans for Safe Access. Here you will find recommendations for patients, learn how states are responding to COVID-19, and more. 


Canadians for Fair Access to Medical Marijuana: Information on Canadian access to medical cannabis during COVID-19. Learn more.



Industry 


Treatment Assistance

 

  • Medicine Assistance Tool: Provides a search engine designed to help patients, caregivers and health care providers learn about the resources available through the various biopharmaceutical industry programs. Learn more. 
  • AbbVie: Find out if your prescribed medicine is available through myAbbVie Assist, and get started my checking eligibility. Learn more . 
  • Bristol-Myers Squibb (BMS): Here you will find help for eligible unemployed patients in the U.S. who have lost their health insurance due to the COVID-19 pandemic. This program offers access to BMS medicine for free. Learn more.  Learn more .

 


PhRMA: Resources for l ooking out for the invisibly vulnerable, supporting the front line, how biopharmaceutical science is fighting back, helping those effected my COVID-19, and tips for preventing the spread in communities. Learn more. 


Novartis:  Patients and caregivers COVID-19 Information, perspectives on COVID-19, and their response to the pandemic. Learn more. 


Bristol-Myers Squibb (BMS) : Bristol Myers Squibb and GRYT Health have launched the COVID Advocacy Exchange, a virtual platform to unite advocacy organizations, patients and industry in the exchange of information. Learn more.




Rheumatology Associations & Professional Associations


Alliance for Patient Access:   List of resources related to insurance prior authorization, home infusion restrictions, COVID-19’s toll on mental health, how co-pays could help fight COVID-19, and what COVID-19 means for surprise billing. Learn more. 


American College of Rheumatology: Breaking news from the rheumatology community, information on drug shortages, telehealth, economic support, FAQs ACR COVID-19. Learn more. 

 

  • American College of Rheumatology:   This article gives information on how to navigate telehealth during the pandemic. Learn more. 
  • American College of Rheumatology: Here you will find articles about COVID-19 clinical guidance summary for pediatric patients with rheumatic disease and clinical guidance summary for pediatric patients with MIS-C associated with SARS-CoV-2 and hyperinflammation in COVID-19. Learn more. 

 


British Society of Rheumatology: Main landing page for the British Society of Rheumatology. Here you will find COVID-19 guidance from rheumatologists, answers to questions regarding COVID-19 and immune compromised individuals, and links to more resources. Learn more. 


European League Against Rheumatism (EULAR): Here you will find EULAR guidance for patients in the COVID-19 outbreak, resources for more information, and tips to help prevention. Learn more. 


Federation of American Scientists: Ask scientists questions about COVID-19 and see their answers to questions from others. Learn more. 


Infectious Disease Network:   This Facebook page collates news and perspectives on emerging infectious diseases: Follow the Coronavirus outbreak, learn about how SARS-CoV-2 invades the body, COVID vaccine frontrunners, and clinical trials. Learn more. 


John Hopkins Rheumatology: Here you can learn more about coronavirus, find symptoms and diagnosis information, see answers to FAQ, learn how to protect yourself and others, and find information for parents and caregivers. Learn more.

 

Rheumatology Nurses Society:   Here you will find information from the CDC, FDA, WHO, American College of Rheumatology, PPE and safety during COVID-19, and supply shortage resources. Learn more. 


Simple Tasks: This page goes in depth about helping patients decide when and how to seek care, and tips on how to navigate telehealth. Learn more. 


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