Letter to ACLU

American Civil Liberties Union

Disability Rights

125 Broad Street, 18th Floor

New York NY 10004

 

 

January 13, 2024

 

 

Dear ACLU,

 

We write to you today in our capacity as Disability Advocates, Public Health, and Legal Experts, representing the interests of healthcare workers, patients, and particularly the disabled and elder communities who will be affected by the draft proposals recently passed by the CDC’s Healthcare Infection Control Advisory Committee (HICPAC). The CDC has not yet agreed to adopt these proposals, presenting a critical opportunity for the defense of civil rights for people with disabilities and for public health writ large, particularly as the United States is currently in its second largest surge of the entire COVID-19 pandemic, suffering more than 2,000 deaths per week. Our letter to you today is currently being covered in Forbes.

 

 

We deeply appreciate the ACLU’s longstanding commitment to disability rights and public health advocacy, and we believe the situation we bring to your attention has significant, unprecedented, and urgent implications for individuals with disabilities and their access to safe, equal medical care. We are aware of the ACLU’s firm commitment to advocating for the full integration of people with disabilities into all aspects of society, including housing, education, and healthcare. This commitment has made you a steadfast ally for people with disabilities, and we recognize your dedication to uphold these rights.

 

 

HICPAC has passed draft proposals to update guidelines for infection control in healthcare settings. Their drafts, as presented at the June 2023 HICPAC meeting, ignore decades of research on aerosol transmission of infectious diseases and considerably weaken the standards of respiratory protection, ventilation, and isolation protocols. This proposed change disproportionately affects many disabled individuals, people who are already at increased risk from infectious diseases.

 

The draft guidelines recommend surgical masks rather than fit-tested N95 respirators, for healthcare workers interacting with ‘seasonal viruses’ known to transmit through the air,  including SARS-CoV-2. However, surgical masks are not respiratory protection for infectious aerosols that can be inhaled by health care workers. When these same viruses are in ‘pandemic phase,’ N95 respirators would be recommended. Transmission modes of a virus do not change just because we call it something different. Additionally, it is unclear whether or how the draft proposed guidelines will include other essential measures, like ventilation and patient isolation, which would increase the risk of virus transmission in healthcare settings. 

 

 

The proposed guidelines likewise contain no mention of use of masking for preventative care. Disabled people and elders across the country have reported to us being unable to access safe care, following CDC guidance from September 2022, which suggested hospitals may stop requiring masks unless COVID levels are high, with no clear benchmarks to indicate “on-ramps” for returning layered protections. As a result, many people have reported healthcare facilities refusing their requests for healthcare workers to wear masks, or requesting burdensome and time-consuming medical documentation to prove that masked care is medically necessary.  

 

 

Until May of 2023, masked care was standard practice in most healthcare facilities – an acknowledgement of the nature of aerosol transmission of SARS-CoV-2, flu, measles and other respiratory viruses. Although the CDC changed its guidance on masking in healthcare in September 2022, infectious disease experts have continued to argue for universal masking to remain as a standard of care. Other experts have highlighted the financial conflict of interests hospitals have in seeking to remove masks. Compliance with federal stipulations of the need to create safe and equally accessible healthcare for protected classes implies that universal masking should be the new standard of care. 

 

 

As legal experts specializing in disability and elder law, we must emphasize the alarming discriminatory undertones present in the proposed guidelines. By weakening respiratory protection and isolation protocols, these proposals risk creating an environment where disabled and elderly individuals may receive substandard care or even be excluded from care altogether. The proposals, as currently drafted, appear to be in potential conflict with the provisions of both the Americans with Disabilities Act (ADA) and the Age Discrimination Act of 1975, thereby undermining the very principles of equity and inclusion that form the foundation of our healthcare system.  

 

Because layered protections including universal masking, ventilation, and isolation protocols are essential to maintaining safe healthcare settings from infectious diseases which can be transmitted through the air via inhalation, such settings would be less safe for disabled individuals, elders and vulnerable children and infants who seek frequent care for management of disabilities and chronic conditions. 

 

 

By potentially creating a healthcare environment that disproportionately exposes people with disabilities to health risks, the guidelines may undermine the ADA’s guarantee of access to public services. The Age Discrimination Act of 1975, which prohibits discrimination on the basis of age in programs and activities receiving federal financial assistance, could also be violated by these proposals. Without proper protections, some persons with disabilities will not seek needed care and are, in effect, being excluded from needed care, because they judge the risk of exposure to be too high. These violations may lead to litigation, as healthcare providers grapple with the implications of guidelines that could disenfranchise those most in need of comprehensive, accessible care. It is imperative that government agencies recognize these discriminatory risks as we assess the full impact of HICPAC’s draft proposals.  

 

 

Further, the proposed changes are structured to give “flexibility” to healthcare companies to make decisions based on cost and staff availability, rather than patient safety. We witnessed ways in which healthcare rationing and cost-cutting in the form of “crisis standards of care” harmed disabled people and seniors. In essence, HICPAC is seeking to formally adopt limited-to-only “crisis standards of care” as their new proposed baseline. 

 

 

The development of these guidelines has also lacked transparency and appropriate public input – a point made by 900s experts in a recent letter to CDC Director Mandy Cohen. The disability community, among other stakeholders, was not involved in the process and we still have been unable to access the proposal on which HICPAC voted in November 2023. This approach undermines democratic values and obstructs stakeholders from having a voice in matters that directly affect them.

 

 

We are deeply concerned about the ramifications of these proposed guidelines and are looking to the actions outlined herein to ensure the safety of the most vulnerable among us. As the ACLU’s intervention in CVS demonstrates, the ACLU has a deep understanding of disparate impact in discrimination cases. There is strong evidence showing that mask-optional policies similarly create a disparate impact for people with disabilities seeking healthcare. ACLU’s involvement would greatly aid in this endeavor, given your robust commitment to the rights of the disabled community and the rights of all individuals to safe and accessible healthcare.

 

 

The proposed guidelines deviate from the CDC’s stated commitment to health equity, which emphasizes ensuring fair and just opportunities for all to attain their optimal health. In precedents such as the Talveski case, courts have upheld individuals’ right to fair or safe administration of government programs, including those like Medicaid or others receiving federal funding. We find that these new guidelines directly contradict these established precedents.

 

 

Urgent Call to Action

 

We are currently facing a crisis in healthcare standards that requires immediate intervention. The decisions we make now could permanently alter the course of healthcare safety in the United States. With the assistance of the ACLU, we urge the exploration of the following options. With HICPAC voting on their proposed updates in November 2023, we hope to receive a response from you in the next month, in order to facilitate coordination. 

 

 

• Public Advocacy Action: Rallying public support for updates to the 2007 guidance that strengthen protections for patients and healthcare workers with regards to aerosol transmission. 

• Writing to the Civil Rights Division of the US Department of Justice and urging them to act to protect the right to safe healthcare in a context of ongoing transmission of harmful aerosolized viruses. 
• Creating public education campaigns supporting the right to healthcare safe from inhalation of infectious aerosols. 

• Legal Action: Explore legal avenues to challenge these potentially unlawful and harmful guidelines, including the option of suing the CDC.

• Federal Policy Advocacy: Lobbying lawmakers to enact legislation requiring masking in healthcare settings. Furthermore, fighting bans against masking and Covid vaccines is vital for both present and future public health crises.

High Stakes Situation

 

This situation has very high stakes. If we do not act swiftly, we risk permanent loss of health and safety measures that have become essential since the discovery of COVID-19, a disease that remains prevalent, harmful, and with a chronic phase known as Long COVID. The proposed abandonment of universal masking marks the first time in the history of Western medicine where there is coordinated abandonment of a sanitary and protective measure known to prevent nosocomial infection of a novel infectious disease still prevalent in healthcare settings. Such a decision does not only implicate COVID-19; we are at risk of healthcare settings abandoning significant pieces of infection control writ large, for almost all infectious diseases, with few exceptions. 

 

 

Coordinated Abandonment: A Grave Risk

 

The coordinated abandonment of established measures not only perpetuates the current pandemic but also ensures that we are ill-prepared for the next, including aerosol transmitted viruses like H5N1 Avian influenza, which has a much higher fatality rate in humans. This is particularly urgent given that we are in the midst of a climate crisis, predicted to increase zoonosis and transmission of both novel and known infectious diseases.

 

 

Impact on Vulnerable Populations

 

 

Lowering standards of health and safety in healthcare does not make sense, especially when the infectious disease they target continues to pose a threat to vulnerable populations such as any patient population, including people with disabilities, cancer patients, the immune-suppressed, older adults, newborn infants, and pediatric patients whose immune systems are not fully developed.

 

A recent decision by the British Columbia Human Rights Tribunal, wherein they accepted a class action complaint, serves as a poignant example of the growing international recognition of the importance of inclusive healthcare policies and the potential legal repercussions when they are not upheld. This complaint highlights a deeply concerning issue related to a mask ban implemented in healthcare facilities in the region.

 

 

The crux of the complaint rests on the notion that the mask ban might effectively deny access to healthcare for certain patients, including those most vulnerable or at high risk, such as individuals with disabilities. By prohibiting the use of high quality masks or respirators, which are vital in protecting oneself from COVID-19, the ban places these individuals in a precarious situation where they may be forced to choose between risking exposure to a potentially lethal virus or forgoing essential medical care.

 

 

This action by the British Columbia Human Rights Tribunal underscores the gravity of the situation and sets a precedent that resonates far beyond Canadian borders. It sends a clear message that healthcare policies must carefully consider the rights and needs of all patients, particularly those most vulnerable, and that failure to do so can lead to legal challenges.

 

The situation demonstrates that well-intentioned health policies must be thoughtfully crafted to avoid inadvertently creating barriers to care for those who need it most. It’s a stark reminder of the delicate balance that must be struck between implementing necessary safety measures and ensuring that these measures do not disproportionately impact certain populations, particularly those who may already face challenges in accessing healthcare.

 

 

With HICPAC voting for these proposed guidelines in November 2023, it is important to take action in a timely manner. We implore you to consider our plea and look into this matter. We look forward to potentially collaborating with the ACLU to ensure that health safety measures in healthcare settings are upheld, and the rights of the disabled community, along with the rights of all individuals, are protected.

 

 

Please do not hesitate to contact us should you require additional information or have any questions regarding this pressing matter.

 

 

Thank you very much for your time and consideration.

 

 

Sincerely,

Pantea Javidan, JD, PhD

CDC de Pueblas

 

Mary Jirmanus Saba, Disability Advocate

CDC de Pueblas

 

Andrew Wang, PhD, MPH

CDC de Pueblas

 

Noel Sanders, Senior Organizer

Boston Center for Independent Living 

 

Colin Kilick, Executive Director

Disability Policy Consortium