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DSMIG-USA - Intellectual and Developmental Disability COVID-19 Vaccination Position Statement

Updated -January 5, 2021

Our world has been extensively changed by the COVID-19 pandemic. This virus has altered many aspects of our daily lives and impacted our physical, mental, and social well-being. It has caused a great deal of illness and death. Over 350,000 people in the United States and over 1.8 million people worldwide have died from COVID-19. Sadly, people with Down syndrome and other intellectual disabilities have been disproportionally affected by the COVID-19 pandemic compared to the general population (1,2).

For months, it seemed like there was no end in sight. Fortunately, COVID-19 vaccines are now becoming available, and we are rapidly moving in a positive direction. COVID-19 vaccines developed by Pfizer-BioNTech and Moderna received Emergency Use Authorizations from the U.S. Food and Drug Administration (FDA). Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, stated, “Certainly it’s not going to be a pandemic for a lot longer, because I believe the vaccines are going to turn that around. Vaccines will help us. What we’ve got to do is just hang on and continue to double down on the public health measures” (3).

Like Dr. Fauci, we are hopeful that the vaccine will be a major contributor to the end of the pandemic. However, some have expressed concern about whether the vaccine is safe for people with Down syndrome or other intellectual disabilities.

At this time, we recommend the COVID-19 vaccine for individuals with Down syndrome or other intellectual disabilities who do not have a specific contraindication to the vaccine (as described below).

Our recommendation is consistent with national and local guidelines for receiving the COVID-19 vaccine. This document contains additional information supporting our recommendation as well as answers to questions we have received. If individuals with Down syndrome or another intellectual disability have concerns about the vaccine, we recommend discussing their concerns with their health care provider.

Are people with Down syndrome and other intellectual disabilities more at risk for severe illness and death from COVID-19 infection?

  • People with intellectual disabilities have been disproportionally affected by the COVID-19 pandemic in terms of the impact on their daily lives, the reduction in their support systems, and the serious illness from COVID-19 infection (1,2).
  • The Centers for Disease Control recently added Down syndrome to their list of medical conditions that put adults at increased risk for severe illness from COVID-19 (4).
  • People with Down syndrome also have a higher rate of some of the other medical conditions that increase the risk for severe illness from COVID-19. The risk factors include: chronic cardiac disease; chronic pulmonary disease; chronic kidney disease; obesity
  • An international survey found that people with Down syndrome older than 40 years of age were 2.9 times more likely to die from COVID-19 compared to those of the same age in the general population (2).
  • Children with and without DS usually do not get severely sick from COVID-19 and risk seems to be related to additional underlying medical conditions. The survey referenced above found that people with Down syndrome younger than 40 years of age were 2.4 times more likely to die from COVID-19; however, this increased risk was accounted for by other risk factors.

Information about the COVID-19 vaccines

  • The COVID-19 vaccines are messenger RNA vaccines. This type of vaccine causes human cells to make a harmless piece of the “spike protein” of the COVID-19 virus. The immune system then develops immunity against the protein (5).
  • As stated above, the vaccines are available because the FDA issued Emergency Use Authorizations (EUAs). In the event of a public health emergency, such as the COVID-19 pandemic, the FDA can issue EUAs to allow use of medical products before they are fully approved (6). The COVID-19 vaccines were studied in clinical trials and met safety and effectiveness requirements before receiving EUAs.

Who was included in studies of the COVID-19 vaccine?

  • Tens of thousands of people have participated in the studies of the COVID-19 vaccine. This is a well-studied vaccine.
  • The reports of the vaccine studies do not indicate people with Down syndrome or other intellectual disabilities were included in the study population.
  • People with Down syndrome and other intellectual disabilities are not usually included in studies of vaccines, medications, or supplements before they are released/distributed. Therefore, from this standpoint, this is not different than the usual approval process.
  • Occasionally a vaccine or medication will be tested specifically in people with Down syndrome or another intellectual disability post-market (after it has been released for general use). To our knowledge, this type of study has not been initiated for people with Down syndrome or other intellectual disabilities for COVID-19 vaccines at this time.
  • The vaccines were not studied in children. At this time, the Pfizer-BioNTech vaccine is recommended for people ages 16 years and older and the Moderna vaccine is recommended for adults ages 18 years and older.

Are there people who shouldn’t get the vaccine?

  • There is some concern about the vaccine for people who have severe allergic reactions.
  • If the allergy is severe, such as anaphylaxis (which includes difficulty breathing, reduced blood pressure, dizziness, and other symptoms) in response to the first dose of the COVID-19 vaccine, the second dose is not recommended.
  • If the person has a history of severe allergic reaction, including anaphylaxis, to components of the vaccine, the vaccine is not recommended. For example, CDC highlighted polyethylene glycol, which is often used in laxatives.
  • If a person had a severe allergic reaction (anaphylaxis) to a previous different injectable therapy (medication or vaccine), caution is recommended. The CDC does not specifically recommend against the vaccine in that situation but recommends discussing “potential deferral of vaccination” with the individual’s health care provider.
  • For people receiving the injection, the CDC recommends observation for 15-30 minutes after the injection. In those with concerns regarding allergies, a 30-minute observation period is recommended.

What about people with immunocompromising conditions (reduced immunity)?

Recommendation is to proceed with the vaccine.

What about the effect on the immune system (including interferon)?

  • Some individuals have expressed a concern that the vaccine will trigger an increase in interferon or autoimmunity in people with Down syndrome: Autoimmunity is a term to describe when a person’s immune system attacks one’s own body. Interferon is part of the immune system and the level of interferon activity tends to be higher in people with Down syndrome.
  • There are no reports of increased autoimmunity from the COVID-19 vaccines (although follow-up was on average only two months in the studies).
  • No information has been provided from the study of these vaccines about the impact (or lack of impact) of the COVID-19 vaccine on the level or function of interferon. It does not appear to have been studied.
  • All vaccines trigger the immune system and increased autoimmunity has not been reported in people with Down syndrome with other vaccines. However, we note that messenger RNA vaccines are a newer type of vaccine and we do not have evidence that experience with previous vaccines will remain the same for the COVID-19 vaccines.
  • Concern has been voiced about whether those with Guillain-Barre syndrome (GBS) should receive the vaccine. GBS is an autoimmune condition in which the immune system attacks nerves. GBS has not been reported as a side effect of the COVID-19 vaccines. The GBS | CIDP Foundation International released this statement: “To date, no cases of GBS have been associated with the COVID vaccines. However, the number of subjects in the clinical trials is too small to detect such a rare event, if it existed, and surveillance is ongoing. In the meantime, we would urge all to follow national and local guidelines about who should get the vaccine. At this time, there is no reason that those who had GBS in the past cannot get the current COVID vaccines. If they have concerns, they should speak to their local health care professionals” (7).

Summary

  • We agree with the CDC recommendations that the COVID-19 vaccines are appropriate and recommended for most people. The vaccine may not be appropriate for people with severe allergies.
  • People with Down syndrome, particularly those over 40 years of age and people less than 40 years of age with risk factors, are more susceptible to complications from COVID-19 infection.
  • These vaccines specifically and messenger RNA vaccines in general have not been studied in people with Down syndrome or other intellectual disabilities. This is often the case for other vaccines, medications, and supplements.
  • Since there is a lack of data regarding the benefits and risks of the COVID-19 vaccines for people with Down syndrome and other intellectual disabilities, this recommendation is based on the results of vaccine testing for people without Down syndrome or another intellectual disability. The disproportionate effect of the pandemic on this population was also considered.
  • Previous vaccines that also trigger the immune system (albeit with different technology) have not had significantly different side effects for people with Down syndrome or other intellectual disabilities.
  • Studies indicate the vaccine is a safe path to reduce symptomatic COVID-19, save lives, and aid in a more rapid return to the many aspects of our lives that have been altered.

Conclusion

After considering the risks as well as other factors, including the effect of the pandemic on people with Down syndrome and other intellectual disabilities, and the safety of the vaccines in the general population, we recommend the COVID-19 vaccine for individuals with Down syndrome or other intellectual disabilities who do not have a specific contraindication to the vaccine (such as allergies as noted above).

  1. https://www.nih.gov/news-events/news-releases/people-intellectual-developmental-disabilities-disproportionately-affected-covid-19 
  2. https://www.medrxiv.org/content/10.1101/2020.11.03.20225359v1
  3. https://www.bloomberg.com/news/articles/2020-11-12/covid-won-t-be-pandemic-for-long-thanks-to-vaccines-fauci-says
  4. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html
  5. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html
  6. https://www.fda.gov/vaccines-blood-biologics/vaccines/emergency-use-authorization-vaccines-explained
  7. https://www.prnewswire.com/news-releases/guillain-barre-experts-clarify-covid-19-vaccine-confusion-with-open-letter-to-dr-as-fauci-301197070.html

Download the full PDF of the statement here.

Supported by:



JOINT Position statement regarding covid-19 vaccine

The development of a safe, effective vaccine is a critical component of the global response to the coronavirus disease 2019 (COVID-19) pandemic. Vaccine distribution and allocation must be done in a safe and equitable manner, and individuals with intellectual and developmental disabilities (IDD) must be explicitly addressed in any framework for vaccine allocation. The aim of this joint position statement is to address the risks facing people with IDD during the pandemic and to recommend how they should be included in vaccine allocation frameworks. Click here to download the statement.


Help us learn more about COVID-19 among people with Down syndrome

The Trisomy 21 Research Society (T21RS), with the endorsement of many international Down syndrome organizations, is collecting vital information to understand the risks and course of COVID-19 among people with Down syndrome (DS). The goal is to learn if people with DS are more vulnerable or have a different course of illness related COVID-19 and if their illness is related to their pre-existing health profile. We hope that this information will help identify who is at the greatest risk and how to better protect them.

If the person with DS for whom you provide care has tested positive or has symptoms of COVID-19, we invite you to complete this survey.  It will take about 10-20 minutes to complete. It asks for: 1) general information about the person with DS, 2) their pre-existing conditions, 3) whether they were tested for COVID-19, 4) COVID-19 symptoms and 5) treatments and outcome.

None of the survey data will be linked to you or the person with DS. In other words, it will be anonymous. You might receive this request to complete the survey many times. Please only complete the survey once for each person with DS for whom you care.

Please click on the link below to start the Clinician Survey:

Clinician Survey in English 

Clinician Survey in Spanish 

National Consortium Creates Important Covid-19/Down Syndrome Resource

The unprecedented spread of Coronavirus (COVID-19) presents the world with a unique challenge and calls for a united response to better understand its impact on the Down syndrome community. Down Syndrome Medical Interest Group-USA (DSMIG-USA) is proud to collaborate with Global Down Syndrome Foundation (GLOBAL) , LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and Down syndrome medical experts to publish a new resource.

IMPORTANT UPDATED DS/COVID-19 Q&A! New links and info on going back to school/work/programs & more. DSMIG-USA is proud to support GLOBAL & the national consortium.

Read and share the Q&A here: DS & COVID-19 Q&A


OTHER NEWS

  • 08 Jan 2020 3:09 PM | Anonymous member (Administrator)
    • Notice of Special Interest: Ruth L. Kirschstein National Research Service Award (NRSA) Fellowship Awards to Support Training in Research Related to Down Syndrome as Part of the INCLUDE Project (NOT-OD-20-020)
    • Notice of Special Interest: Mentored Career Development Awards to Foster the Careers of Investigators Pursuing Research Related to Down syndrome as Part of the INCLUDE Project (NOT-OD-20-021)
    • Small Research Grants for Analyses of Down Syndrome-related Research Data for the INCLUDE Project (R03 Clinical Trial Not Allowed) (RFA-OD-20-006)


  • 01 Nov 2018 11:06 AM | Anonymous member (Administrator)


    LuMind Research Down Syndrome Foundation Launches the Down Syndrome Clinical Trials Network. $3M initial commitment from Alana Foundation, H. Lundbeck A/S and AC Immune SA

    https://www.lumindrds.org/ds-ctn/

     

     

  • 29 Oct 2018 10:03 AM | Anonymous member (Administrator)

     George Capone, MD and Brian Chicoine, MD presented a webinar on 9/18/2018 sponsored by LuMind Research Down Syndrome Foundation: Understanding a sudden loss of skills in children or young adults with Down syndrome. You may wish to view this yourself or recommend it to parents of your patients

    The webinar can be viewed at https://lumindfnd.webex.com/lumindfnd/lsr.php?RCID=c018fe090a4b4ea3ac563031df439369

    The webinar is one hour 53 minutes in length and includes opening remarks from Hampus Hilstrom, President and CEO of LuMind RDS Foundation followed by presentations from George and Brian. George’s presentation focused primarily on regression among children with DS and Brian’s presentation addressed the phenomenon among adults with DS.

     

  • 21 Jun 2018 9:20 AM | Anonymous member (Administrator)

     The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project was launched in June 2018 in support of a Congressional directive in the fiscal year (FY) 2018 Omnibus Appropriations. The directive calls for a new trans-NIH research initiative on critical health and quality-of-life needs for individuals with Down syndrome. NIH is dedicating $21 million for INCLUDE research, bolstering total funding for Down syndrome research in FY2018 to an estimated $58 million, with further support anticipated in FY2019 and beyond, pending availability of funds.

    Visit:  https://www.nih.gov/include-project

  • 25 Oct 2017 11:28 AM | Anonymous member (Administrator)

    See the landmark testimony from today's congressional hearing on Down Syndrome biomedical research

    Link: http://appropriations.house.gov/calendar/eventsingle.aspx?EventID=395058 



  • 03 May 2017 12:39 PM | Anonymous member (Administrator)

    Recently Published in  AJIDD.

    2017 May;122(3):247-281. doi: 10.1352/1944-7558-122.3.247

  • 28 Jun 2016 5:15 PM | Anonymous member (Administrator)

     This phase II study did not meet its primary and secondary endpoints on improvement in cognition and function

    Roche statement: http://www.roche.com/media/store/statements.htm

    LuMind statement1: https://www.lumindrds.org/response-on-the-roche-clinical-trial-for-clematis/

    LuMind statement2: https://www.lumindrds.org/statement-from-lumind-research-down-syndrome-foundation-on-the-roche-clinical-trials/



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