[Description of photo: A male African-American patient is lying in a hospital bed with an IV in his left hand and a mask with a tube in it over his face.]

Dear President Biden and Members of Congress:

Many of us in the disability community – especially the tens of millions of Americans who are immunocompromised or have other high-risk conditions – are still at high risk of hospitalization and death, even after being vaccinated.

Paxlovid is contraindicated in many people who take other medicines for medical conditions. These individuals are often chronically ill and at high risk for severe COVID outcomes. 

People at high risk of hospitalization and death after vaccination include not only  immunocompromised people but also people with other conditions including, asthma, cardiac disease, COPD, diabetes, hypertension, pulmonary disease, kidney disease, rheumatic disease, sarcoidosis, liver disease, neurological disease, and people who are overweight or aged 65+.

As you know, inequities in healthcare have led to disproportionate numbers of people of color, especially people of color with disabilities, being at high risk of hospitalization and death from COVID-19.

The current COVID-19 guidelines and plans, both from the CDC and the White House, do not sufficiently protect high-risk children and adults from hospitalization, death, long-COVID, and other COVID-related complications.

Those of us who have one or more chronic disabling condition need more protections against getting long-COVID, for many reasons. 

Congress took COVID funding out of its Congressional budget bill. COVID funding must be restored! 

Please show us that you are safeguarding and valuing our lives to the highest degree possible. We make the following requests:

1- Make life-saving medicines and vaccines more accessible

• Procure more Evusheld ASAP and ensure that Evusheld is actually accessible to immunocompromised people. It is currently very difficult to obtain. Please ensure that there is sufficient Evusheld for everyone who needs it before the next COVID variant wave. 
• Fund research on new medicines to protect high-risk populations. Evusheld may not protect immunocompromised and high-risk people against all future variants.
• Ensure that there is funding for variant-specific vaccines -- globally -- in the future.
• Ensure that current and future vaccines are as accessible as possible to all people with disabilities who are eligible for them, especially those individuals who live in congregate settings or need round-the-clock care in their homes.

2- Keep or bring back universal (aged 2+) masking in high-risk settings. Provide free access to N95 masks for teens and adults and KN95s for younger children.

Ensure that people aged 2+ (or at least employees) wear masks (if not contraindicated by other disabilities) in these high-risk settings:

• Healthcare facilities (and N95s are worn by medical staff in operating and procedure rooms with immunocompromised patients)
• Long-term care facilities
• Prisons and jails in areas classified as "medium" or "high" on the CDC's Community Level metric. 
• Group homes in areas classified as "medium" or "high" on the CDC's Community Level metric. 
• Homeless shelters in areas classified as "medium" or "high" on the CDC's Community Level metric. 
  Domestic violence shelters in areas classified as "medium" or "high" on the CDC's Community Level metric. 
• Public transportation: buses, planes, light rail cars, public transport vans, etc., on planes and in areas classified as "medium" or "high" on the CDC's Community Level metric. 
• Day care facilities in areas classified as "high" on the CDC's Community Level metric. 
• Schools in areas classified as "high" on the CDC's Community Level metric. 
• Workplaces in areas classified as "high" on the CDC's Community Level metric. 

3- In public spaces we tend to visit less frequently, we need the return of “hours of operation for high-risk customers". 

Encourage county public health departments to put in place public health orders for required masks during "high-risk hours," so that public agencies and businesses can ensure accessibility for high-risk patrons and customers.

These spaces would include grocery stores, pharmacies, food banks, DMV offices, post offices, social services offices, libraries, recreation centers, museums, etc. Require masks and physical distancing during the “high-risk hours of operation” (with all adults and children aged 2+ wearing masks).

4- High-risk people have rights 

Adults and children with high-risk disabilities have rights to accommodations under the Americans with Disabilities Act (ADA).

• High-risk students and teachers/faculty  – from pre-school to higher education – have the right to be in classrooms with reasonable accommodations (everyone is wearing masks, and there are appropriate measures taken, such as physical distancing, and good ventilation). [If these measures are still not enough to protect certain extremely high-risk students, they need services that ensure high-quality public education.]
• High-risk employees have the right to reasonable accommodations, such as all employees wearing masks and physical distancing in small, enclosed spaces. Ensure improved ventilation in these spaces also through federal funding and initiatives.
• High-risk employees need the flexibility to work from home (if the profession lends itself to working from home) when there are high cases of COVID-19 in our communities and/or workplaces.

5- Provide robust, universal sick leave and universal access to healthcare (including testing and treatment) for uninsured people.

6- Make resources available for assessing personal risks

The COVID-19 Semi-Quantitative Antibody test may be obtained through LabCorp, without a doctor's order. 

• Ensure continued free access to COVID tests, including PCR and NAAT tests. 
• Make the semi-quantitative antibody tests more widely available to high-risk individuals, especially in congregate settings, so that we can better know our risks at least every three months. Ensure that insurance companies and Medicaid/Medicare are shouldering the bulk of the costs.
• Prioritize research on immunity among marginalized populations. There is currently scant information about immunity among marginalized groups. Are there racial and ethnic disparities in immunity responses to vaccines? What does immunity look like among vaccinated people with intellectual and developmental disabilities and people with psychiatric disabilities? These questions are important to answer. Ensure that the NIH and CDC are conducting research and/or funding research on post-vaccination immunity and COVID-outcomes among high-risk people. 

7- “Nothing about us without us”

The proposed COVID-19 Racial and Ethnic Disparities Task Force will be crucial as we enter this new phase of the pandemic. Additionally, we ask for disability advisory committees led by people of color with disabilities.

• Develop disability advisory committees, led by people of color with disabilities, which advise governmental agencies, such as the CDC and White House COVID-19 Task Force. Similar advisory committees could advise state public health agencies and governor’s offices. 

We ask you to include the perspectives of high-risk disabled people – especially high-risk disabled people of color – as much as possible, in new COVID plans, including new long-COVID plans.

Thank you for your consideration of these requests.

References:

1. CDC COVID-19 Community Levels
2. Disparities in Deaths from COVID-19: Racial and Ethnic Health Disparities
3. Drug-Drug Interactions Between Ritonavir-Boosted Nirmatrelvir (Paxlovid) and Concomitant Medications
4. Effectiveness of the BNT162b2 vaccine among children 5-11 and 12-17 years in New York after the Emergence of the Omicron Variant
5. Impaired SARS-CoV-2 mRNA Vaccine Antibody Response in Chronic Medical Conditions
6. Outcomes in patients with and without disability admitted to hospital with COVID-19: a retrospective cohort study
7. Risk Factors for Severe COVID-19 Outcomes Among Persons Aged ≥18 Years Who Completed a Primary COVID-19 Vaccination Series — 465 Health Care Facilities, United States, December 2020–October 2021
8. CDC Science Brief: Transmission of SARS-CoV-2 in K-12 Schools and Early Care and Education Programs – Updated - 
9. WHO Now Encourages ‘Urgent’ Booster Shot Access For All — After Previously Opposing Them