Letter from Disability Organizations: CDC/HICPAC’s Plan to Weaken Guidance for Health Care Respiratory Protection and Infection Control
Dr. Mandy Cohen, Director CDC
RE: CDC/HICPAC’s Plan to Weaken Guidance for Health Care Respiratory Protection and Infection Control
Dear Dr. Cohen:
We are writing to you as representatives of the disability community, which has borne the brunt the COVID-19 pandemic (Boswell et al, 2021)[1]. Over the course of the last three years, our organizations have fought for our community to have equitable access to ventilators, to vaccines and treatments, and for immunocompromised people with disabilities to be able to receive healthcare and participate in society without risking their lives due to COVID exposure.
We are writing to express serious concerns about the Healthcare Infection Control Practices Advisory Committee (HICPAC) proposed updates to the current CDC Isolation Precautions for Health Care Settings. We have reviewed the work group’s presentation delivered at the June 2023 HICPAC meeting. The recommendations do not ensure that the people we represent will be protected, as workers or patients, in health care settings going forward.
Many people with disabilities or chronic illness must regularly attend in-person appointments in various healthcare settings to receive ongoing specialist care, such as physical therapy, respiratory therapy or chemotherapy. Many such individuals are also at increased risk of severe illness or death from COVID-19 for reasons arising directly from their disabilities, whether as a direct physiological consequence of their conditions (e.g. those with Asthma or Cystic Fibrosis), reduced immune system function due to their condition (e.g. HIV/AIDS), reduced immune system function due to the side effects of treatment for their conditions (e.g. immunosuppressant drugs for Lupus or chemotherapy for cancer), or the long term consequences of Covid (e.g. organ damage and symptomatic long Covid).
Under the Americans with Disabilities Act, these patients have the right to receive care in a way that is accessible to them and meets needs arising from their disabilities. Providers going unmasked would lead to a disparate impact on disabled patients compared to non-disabled patients, both because the consequences for their health will be worse if they contract the virus, and because their underlying conditions require they make more frequent medical visits than non-disabled patients, increasing their likelihood of exposure. Patients themselves wearing masks is insufficient to mediate this risk, both because data show that one way masking can be fifty times less effective than two way masking at preventing infection of the masked individual (Bagheri et al., 2021), and because some disabled patients are unable to mask, either because of their underlying conditions (e.g. if they are ventilator users) or if they are undergoing treatment that is incompatible with masking (e.g. respiratory therapy).
The Biden Administration requires federal agencies to focus on issues of equity. For CDC, such issues should include a focus on ensuring that everyone – especially those at higher risk of infection – are protected in health care settings. According to the workgroup’s June 2023 HICPAC presentation, the draft guidelines are designed to provide a minimum level of protection, not to protect vulnerable and high- risk groups. This approach ignores all we have learned during the COVID-19 pandemic about the disproportionate risks faced by many individuals and groups including those with existing health conditions and co-morbidities. Moreover, the guidelines ignore that people with disabilities have a right to reasonable accommodations under the Americans With Disabilities Act. In order to comply with the law, any individual with disabilities that would expose them to increased risk from COVID would have the right to request that any medical personnel who interact with them are masked, and the burden of proof would be on any provider refusing such a request to prove in court that the request was not reasonable.
We strongly urge you to open up the HICPAC process to include representatives from our community as well as from all stakeholders impacted by the HICPAC recommendations. All voices and perspectives need to be included, not just those of infectious disease professionals and hospitals. The guidelines must be designed to provide a high level of protection to everyone, not a minimal level of protection to the general population.
We have been informed that the CDC staff believes it is too early in the process for our involvement. It is never too early to hear from and include all potential stakeholders, particularly representatives of individuals at higher risk of exposure and adverse serious impacts from infection. The CDC Isolation Precautions are extremely important for ensuring that everyone’s exposure to aerosol-transmissible diseases in all types of health care settings is kept to an absolute minimum. It is not appropriate to leave the development and decisions about infection control recommendations up to a small group of individuals who operate in a closed, non-transparent process. And it is not appropriate or acceptable to ask us to wait until HICPAC is finished with its recommendations rather than including us as full partners in the development of the draft guidelines and decision-making. When this approach was taken with the development of Crisis Standards of Care, the result in many states were rules that actively devalued the lives of people with disabilities and deprioritized us for treatment. Many of our organizations mounted successful legal challenges and advocacy campaigns against these policies, and we would urge you not to put us in the position to have to do so again.
Yours sincerely,
Disability Policy Consortium
Disability Law Center
Disability Resource Center
Boston Center for Independent Living
Metrowest Center for Independent Living
Mental Health Legal Advisors Committee
[1] These data are from the UK, where they found 58% of those killed by COVID had disabilities, more than three times the disability share of the population. While similar data is not available for the U.S., there is little reason to think the situation was better here.
