Alice Wong and Advocacy Groups Demand Systemic Changes in UCSF Healthcare

Download the PDF

March 15, 2024

Via Email suresh.gunasekaran@ucsf.edu
Suresh Gunasekaran
President, CEO, UCSF Health
400 Parnassus Avenue
San Francisco, California, 94143

Via Email rachel.nosowsky@ucop.edu
Rachel Nosowsky
General Counsel, UCSF Health
1800 Owens Street, No. D428
San Francisco, CA 94158

Via Email Greta.Schnetzler@ucsf.edu
Greta W. Schnetzler
Chief Campus Counsel
Via Email Ann.Sparkman@ucsf.edu
Ann Sparkman
Chief Medical Center Counsel
Office of Legal Affairs, UCSF
745 Parnassus Ave, Floor 2
San Francisco, CA 94143 

Via Email Wendy.Tobias@ucsf.edu
Wendy Tobias EdD, CRC, LPCC
Chief Accessibility Officer, ADA Coordinator
Office of Disability Access and Inclusion
500 Parnassus Avenue, MU-102 West
San Francisco, CA 94143

Via Email julie.oberts@ucsf.edu
Julie Oberts, Ed.D.
Complaint Resolution Officer
Office for the Prevention of Harassment and Discrimination, UCSF
490 Illinois Street
San Francisco, CA 94158

Via Email patient.relations@ucsf.edu
Office of Patient Relations
UCSF Medical Center
Patient Relations Department
350 Parnassus Avenue, Box 0208
San Francisco CA 94143-0208

Via Email adeena.khan@ucsf.edu
Adeena Khan
Medical Director
Moffitt/Long Medical Service
505 Parnassus Ave
San Francisco, CA 94143

RE:      Experiences of Alice Wong at UCSF Emergency Room and Intensive Care Unit on January 20 and 21, 2024, at Moffitt/Long Hospital; Demand for Change

Dear Colleagues:

We are writing on behalf of Alice Wong, a longtime and well-known San Francisco resident and disability justice activist and writer. Alice is a disabled woman who uses a wheelchair for mobility and relies upon a tracheostomy connected to a ventilator to breathe. She uses text-to-speech software on her smartphone to speak. Diagnosed with muscular dystrophy and respiratory failure, Alice is at very high risk for severe illness and death from infectious diseases such as COVID and RSV. Alice was recently forced to visit Moffitt/Long Hospital for an urgent medical need. Throughout her stay, Alice’s needs for appropriate infection control (N95 masking) and effective communication were disregarded. She was subjected to the constant risk of infection from unmasked or improperly masked staff. (Alice cannot herself wear a mask because she is unable to breathe through her nose and mouth. Her ventilator’s filter does not have the same protection as a N95 mask.)

As a result of these unmitigated legal violations, Alice experienced excruciating pain, dehumanization, and severe emotional trauma. Her harrowing account is detailed in her January 25, 2024, complaint, see https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/.

A representative of the Office for the Prevention of Harassment and Discrimination at UCSF has reached out to Alice in response to the complaint, which she appreciates. Alice has decided to work with DREDF, Independent Living Resource Center San Francisco, and CommunicationFIRST to help her communicate and negotiate with UCSF about her experiences, concerns, and demands. This letter follows.

The emergency room (ER) and intensive care unit (ICU) at Moffitt/Long, like all UCSF medical facilities, is subject to federal and state disability nondiscrimination statutes, including Title II of the Americans with Disabilities Act, 42 U.S.C. § 12131, et seq., Section 504 of the Rehabilitation Act, 29 U.S.C. § 794, Section 1557 of the Affordable Care Act, 42 U.S.C. § 18116, and other laws, see, e.g., Cal. Gov. Code § 11135.

These laws require UCSF medical facilities to provide individuals with disabilities equal access to their programs and activities and ensure that such programs and activities are readily accessible to individuals with disabilities. 28 C.F.R. §§ 35.130(a), (b)(1), (8), 150(a). Further, UCSF must provide reasonable modifications to policies and practices where necessary to ensure disability access and nondiscrimination. 28 C.F.R. § 35.130(a), (b)(7).

The failure to ensure appropriate infection control in patient areas, including appropriate masking with an N95 mask, is an administrative method that excludes and discriminates against members of the public like Alice who are at heightened risk of severe illness and death from contracting infectious diseases due to their disabilities. It is also a failure to provide a feasible, low-cost, reasonable modification to existing policies and procedures.

The Pacific ADA Center, https://www.adapacific.org/about-the-pacific-ada-center/, funded by the by the U.S. Department of Health and Human Services, Administration for Community Living, provides resources, training, and support to help the community understand and apply the Americans with Disabilities Act (ADA) and other federal disability rights laws. Its position on healthcare accommodations states:

The Americans with Disabilities Act (ADA) is a law that prevents discrimination against people with disabilities. Healthcare facilities, like hospitals and doctors’ offices, have to follow ADA requirements. Some patients who visit healthcare facilities have disabilities that make them more likely to contract diseases that are easily spread (such as COVID-19 or a lung virus like RSV). These patients also may be more likely to get very sick from these illnesses or take longer to get better. Healthcare facilities must provide reasonable accommodations to protect patients with these types of disabilities. Accommodations can include:

• • telehealth (where it can be effective),
  • a separate space to wait for appointments,
  • masking by all staff located near the patient,
  • better ventilation at the site by opening windows and running air filters, and
  • other modifications.

Pacific ADA Center position statement on healthcare accommodations, https://www.adapacific.org/the-pacific-ada-center-position-statement-on-healthcare-accommodations/ (emphasis added); see also San Francisco Mayor’s Office on Disability Healthcare Access Statement (“San Francisco has heard from our residents with disabilities and older adult communities that some are particularly concerned about their safety in healthcare situations, specifically when it comes to masking. … MOD supports the guidance from the Pacific ADA Center that considers masking by all staff located near the patient to be an applicable reasonable accommodation and/or modification to policy.”) (on file with DREDF).

In an analogous context, courts have ruled that directing teachers, staff, and other students to wear masks to protect students with disabilities is a reasonable accommodation under the ADA. Arc of Iowa v. Reynolds, 24 F.4th 1162, 1167 (8th Cir. 2022) (affirming lower court’s grant of a preliminary injunction in part, reasoning that “mask requirements are reasonable accommodations required by federal disability law to protect the rights of Plaintiffs’ children.”), vacated for mootness, 33 F.4th 1042 (2022); Iowa v. Reynolds, 638 F. Supp. 3d 1006, 1021 (S.D. Iowa 2022) (mask requirements “allow disabled children who are at an increased risk of severe illness or death from COVID-19 to participate in their school’s programs, services, and activities ‘with a like experience’ to their nondisabled peers” and do not “fundamentally alter the nature of the services that a school provides”). Masking is critical in social contexts that cannot be avoided, such as in-person healthcare.

Further, our long experience during the public health emergency demonstrates that wearing appropriate PPE is a low-cost, feasible, and life-saving modification. The California Department of Public Health endorses the use of high-quality masks to prevent the spread of infectious diseases. CDPH, Division of Communicable Disease Control, When and Why to Wear a Mask, https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/Respiratory-Viruses/When-and-Why-to-Wear-a-Mask.aspx; see also A CDC Update on the Draft 2024 Guideline to Prevent Transmission of Pathogens in Healthcare Settings, https://blogs.cdc.gov/safehealthcare/draft-2024-guideline-to-prevent-transmission-of-pathogens-in-healthcare-settings/. Indeed, many healthcare facilities have reinstituted system-wide mask mandates to respond to recent spikes in in cases of COVID, seasonal flu and other respiratory illness. Brad Brooks, “Mask mandates return at some US hospitals as COVID, flu jump,” Reuters (Jan. 4, 2024), https://www.reuters.com/world/us/mask-mandates-return-some-us-hospitals-covid-flu-jump-2024-01-04/.

As detailed in her complaint, , while experiencing an urgent medical issue, Alice was forced to repeatedly encounter healthcare staff and others who disregarded appropriate infection control and masking. This occurred even though Alice is obviously disabled and attempted to communicate her request for infection control and N95 masking through her supporters. Alice wrote:

I am a high-risk disabled person who is vulnerable to dying from COVID. Wearing a N95 mask is not effective for me since I cannot breathe through my nose or mouth and the in-line bacterial filter attached to my ventilator cannot protect me from COVID and other airborne viruses. …

Upon arrival at the ED, the person who signed me in had a persistent cough and only wore a blue surgical mask[.] Being led to my room in the ED, I was distressed to see so many patients unmasked and coughing and majority of health care providers either unmasked or only wearing a surgical mask[.] I requested a sign asking all people entering my room to wear a N95 posted outside the door …

In [Interventional Radiology] the next day, the technician who set up the sterile field on my abdomen had a persistent cough the entire time while wearing a surgical mask. I could hear him in the back room during my procedure continuing to cough and clear his throat. …

My family friend verbally relayed my intentions and one doctor explained that staff are not obligated to wear N95s and surgical masks are the only ones they can wear by choice, ignoring my reasonable concerns [and requests].

Alice Wong Letter to Office of Patient Relations, UCSF Health (Jan. 25, 2024), https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/. The refusal of UCSF staff to appropriately mask during Alice’s stay violated her right to equal access and reasonable accommodations under federal and state laws.

A separate affirmative requirement for UCSF medical facilities is to communicate effectively with patients with communication disabilities. 28 C.F.R. § 35.160. A public entity like UCSF must take “appropriate steps to ensure that communications with applicants, participants [and] members of the public … with disabilities are as effective as communications with others.” 28 C.F.R. § 35.160(1).

This did not happen during Alice’s stay at Moffitt/Long. Healthcare staff did not spend the time and patience needed to ensure effective communication with Alice. Instead, they separated Alice from her communication device (her smart phone) and ignored her efforts to communicate without speech or the device. A nurse explained to Alice that her caregiver was not allowed in Interventional Radiology to facilitate communication. During a procedure, she was unable to communicate that she was experiencing excruciating pain for more than two hours. As a result, she was unable to revoke her consent to the procedure until pain management was effectively implemented. Alice wrote:

When the IR technician was setting up the sterile field, the only thing he said to me was “Sorry, this will be cold and sting” as he disinfected my abdomen. Frantically, I tried to mouth the words to the nurse to tell him to be careful because my abdomen is in sharp pain. She could not understand me and told me to stop moving when I writhed in pain bursting into tears as he swabbed my abdomen.

The IR nurse said I could have pain medication and administered Versed; the ICU nurse who accompanied me to IR administered multiple doses of Fentanyl throughout the procedure to no avail.

No one asked the two radiologists to pause for a few seconds for the drugs to take effect during the procedure. I was in agony and powerless to stop anything.

Throughout the +2 hour procedure, both nurses wiped tears that kept rolling down my face, advising me to take deep breaths and relax. This only compounded my anger and frustration resulting in tachycardia. I cried so much due to acute pain during that procedure my eyes became swollen. This is unacceptable.

Upon return to the ICU, my heart rate was over 200 beats per minute chalked up as “anxiety.”

The ICU team further defended the lack of communication access, a right under the ADA, due to the need to maintain a sterile field in IR which meant I could not write anything down as if it was my fault for being a non-speaking person. … I have no doubt Speech and Language Pathology or other departments could advise for a solution that does not endanger a sterile environment for procedures and surgeries.

Alice Wong Letter to Office of Patient Relations, linked above.

This disregard for federal civil rights is unacceptable. Staff at UCSF Health should be ready, prepared, and willing to provide nonspeaking people with access to their communication tools and supports in any situation in which speaking people can communicate. The Food and Drug Administration has approved shields that allow smartphones to be used in sterile fields. See, e.g., https://www.whitneymedicalsolutions.com/eshield-covers. Effective communication is essential to informed consent. The failure of medical professionals to ensure effective communication – and the informed consent of people who need communication supports to be understood – causes harm to patients, violates their rights, and contravenes the ethical obligations of healthcare providers.

Even at the start of the pandemic, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) reminded health care facilities that the ADA obligation to ensure effective communication with patients and others remained in place. HHS-OCR, Bulletin: Civil Rights, HIPAA, and Coronavirus Disease 19 (Mar. 28, 2020), p. 2, https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf. In a widely publicized example, an Oregon hospital reportedly denied effective communication and requested medical interventions to Sarah McSweeney, a patient who used a speech generating device such as Alice uses; the patient died. Joe Shapiro, As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? National Public Radio (Dec. 14, 2020), https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc.

Alice Wong, with the support of DREDF, Independent Living Resource Center San Francisco, and CommunicationFIRST, seeks changes in how UCSF Health treats disabled people. Necessary changes include:

• Require that all staff, patients, and visitors to wear a N95, respirator, or its equivalent at all UCSF Health facilities
• Adopt a widely publicized policy with mandatory training and implementation to ensure that non-speaking patients (1) are informed of their communication rights in a healthcare setting, and (2) are not denied effective communication at any time, and have access to their communication tools and supports, including to have full 24-hour access to their own, individualized communication tools and supports, including during procedures in a sterile field.

Alice has made additional appropriate recommendations:

• Annual mandated training by key UCSF Health administrators responsible for patient care and safety and department heads from all hospital and Peninsula locations about healthcare access for people with disabilities including communication disabilities by a disabled-led organization or consultancy.
• Free PCR tests available at all times for all UCSF Health staff
• Installation of UV lighting and/or upgraded ventilation/filtration at all UCSF Health locations
• Partner with a nonprofit or manufacturer to mail out and make available at check-in desks free N95 masks for all patients for their future appointments and visits to UCSF Health
• Kiosks at all UCSF Health locations reporting real-time indoor air quality
• Surpass state COVID-19 isolation guidelines for staff testing positive to more than one day
• Partner and support local mask blocs and other community-based efforts that promote RSV and COVID precautions
• Update HR and infection control policies to require masking, isolation protocols, and reporting of positive results for airborne illnesses
• Update COVID information for visitors and patients online page about the mask mandate and information on how to request reasonable accommodations
• Establishment of COVID safety workgroup with representatives from patients, staff, and community members that has the directive to gather feedback and outline actionable items to UCSF Health leadership

Alice also seeks financial compensation for the suffering and discrimination she experienced while at UCSF. Such funds would go into a GoFundMe account which will go toward her out-of-pocket personal and long-term medical care needs.

Alice would like to meet with UCSF Health representatives together with her lawyers to discuss the policy issues raised in this letter and in her complaint. Please reach out to Claudia Center at ccenter@dredf.org for scheduling and logistics.

Thank you for your attention to this important matter.

Sincerely,

Claudia Center, Disability Rights Education and Defense Fund
Tauna Szymanski, CommunicationFIRST
Brandie Solovay, Independent Living Resource Center San Francisco