#N95s4UCSF: Call to Action
#N95s4UCSF: Call to Action
I’m alive, bitches! My recent column in Teen Vogue about the surge and its impact on me as a high risk disabled person became a terrifying reality when I had a medical emergency that required a visit to the ER and brief hospitalization in the ICU.
Disabled, immunocompromised, and chronically ill people know fully well that the world is not designed for us and how we are often dehumanized and considered burdens by the medical industrial complex. It is an exhausting struggle to be seen and heard while fighting to survive in the face of systemic oppression.
While I was in the hospital I tweeted some of my experiences because I needed to document what was happening and do something while filled with fear.
Writing and organizing is a way to channel my rage and process my medical trauma.
I call upon you all to help me push for a N95 mask mandate at UCSF Health.
No one should have to delay care or risk infection from COVID when receiving necessary medical care.
Even if you are not a patient at UCSF Health or resident in the Bay Area, here’s what you can do.
Steps to Take
- Read the complaint I made to the Office of Patient Relations (see below).
- Email them to demand UCSF Health require that all staff, visitors, and patients wear a N95 mask in all of their locations.
- In your email to the Office of Patient Relations CC the leaders (see below) and BCC me so that I can keep track at N95Masks4UCSF@gmail.com
- Share why you think a N95 mask mandate it’s important for public health and if you are a patient or reside in the SF Bay Area. Do not claim to advocate for or on my behalf. Feel free to cut and paste my primary and additional policy recommendations and any other systemic changes you would like to see at UCSF Health. I did not provide a sample letter because I want you to tell your story and experiences.
- If you are part of an organization, try to get it to submit a message as well.
- Tag @UCSFHospitals and use the hashtags #N95s4UCSF #KeepMasksInHealthcare with a copy of your written response or a link to this blog post.
- Encourage your friends, colleagues, and family to do the same.
Let’s keep each other safe! Also, if you are looking for free N95 masks, here’s a link from the CDC to local clinics and health centers that give away free masks. And you can find your find your local mask bloc here.
Alice
PS: If you’d like to support me, you can make a donation to my GoFundMe or share it which helps defray the out-of-pocket costs for my caregivers so that I can live in the community and have a life.
For more:
Transcript and links for our episode #N95s4UCSF with @SFdirewolf:https://t.co/E4Gmk3k4LJ
— Death Panel (@DeathPanel_) February 1, 2024
Content notes: medical trauma, hospitalization, systemic ableism, death, anxiety, images of injury
Letter to Office of Patient Relations, UCSF Health
TO: Office of Patient Relations, UCSF Health
CC: Suresh Gunasekaran, President, CEO
Elizabeth Engel, Vice President, Chief of Staff to the CEO
Joshua Adler, Executive Vice President, CFO, Vice Dean,
UCSF School of Medicine
Sheila Antrum, COO, Senior Vice President
Cynthia Barginere, President of Adult Services, Senior Vice President and President of Adult Services
Corey Jackson, Senior Vice President, Human Resources
Adeena Khan, Medical Director, Moffitt-Long Medical Service
Molly Kantor, Associate Medical Director of Moffitt-Long Medical Service
January 25, 2024
Hello, my name is Alice Wong and I have been a patient at UCSF Health for over thirty years and am an alumna of the Department of Social and Behavioral Health. I am filing a patient complaint regarding my experience in the ED (emergency department) and ICU (intensive care unit) at Moffitt/Long Hospital January 20-21, 2024.
I am including key members of leadership involved in innovation, patient services, employee safety, clinical services, strategic priorities, and human resources, because I am reporting systemic issues based on my individual experience that are not reflective of UCSF Health’s mission, visions and values.
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.
Last Thursday my j-tube cracked making it unusable. Similar to previous incidents, I relied on the other (g-tube) for feeding, hydration, and medication as I am unable to eat by mouth or swallow until my outpatient appointment with IR (interventional radiology) at Moffitt/Long on January 23, 2024. With increased pain at the site of my stomach stoma and a distended, rigid, and tender abdomen that developed on Friday and Saturday, I reluctantly went to the ED because the pain became intolerable.
Aware of the current surge due to the JN.1 variant, I delayed going because of exposure and potential infection. Here are several elements to my complaint.
OVERALL
My concerns were minimized by several health care providers. I was not heard and seen as a human being.
I did not receive effective, safe, timely and equitable quality of care. I was harmed and traumatized.
I am not safe receiving medical care at UCSF. This is not a “feeling.” This is a fact for myself and a significant percentage of your vulnerable patient population who are part of The Viral Underclass.
This is a public health, infection control, and patient/workplace safety issue.
Lack of adequate masking
- 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
- A respiratory therapist came in and responded, “I don’t normally wear N95s. You are not airborne!” A RT who does not understand 1) my request was not unreasonable; 2) I am clearly a high risk disabled patient with a tracheostomy who is vent-dependent; 3) the dangers of airborne viruses in enclosed, crowded spaces are significant especially in a medical setting. Unable to speak, I wanted to say, “I am surrounded by airborne pathogens in the ED. I’m not the infectious one (yet), I am the one who needs protection.” This was a truly disturbing interaction.
- In IR 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.
- I returned to the ICU after the g-j tube was replaced and requested to speak with the care team informing them about this complaint. 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. Another doctor proceeded to explain that my procedure took longer than expected which was not my chief complaint. The two doctors suggested I was anxious and needed to calm down. I mouthed my response translated by my friend that my “anxiety” is actually anger at the way I was treated at IR and the excruciating pain I experienced (see below).
Communication access and inadequate pain relief
- 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. Healthcare providers know how to work with all kinds of bodies. 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. However, the ICU care team intimated it was an impossibility which I found disappointing.
Primary Recommendation
- At the minimum, requirement of all staff, patients, and visitors to wear a N95, respirator, or its equivalent at all UCSF affiliates and locations indefinitely (in line with more hospitals across the country reinstating mask mandates including some Bay Area counties and Los Angeles County)
Patients come to the ED under great stress, fear, uncertainty, and discomfort. It is incredibly difficult to advocate for the bare minimum under such duress. Why should I have to opt in and request safety measures when it should be the default for everyone? No one should be unnecessarily at risk in outpatient (especially chemotherapy), emergency, and inpatient settings.
With my complex medical needs, extensive experience navigating the healthcare system, and ability to advocate for myself, I expect long wait times, discrimination, and barriers to care and understand how hospitals are overcapacity along with financial and other strains. However, it should not take a pandemic, threat of legal action, or crisis for institutions to improve their practices. As a society, we cared for one another and found the political will and resources to pivot when the pandemic emerged in 2020 only to regress to a “vax and relax,” “you do you” mentality where the burden to stay safe is an individual responsibility rather than a collective one creating conditions for future surges, new mutations, more people developing Long COVID (which is underfunded and under researched), and new outbreaks of COVID, measles, RSV, flu, and other infectious illnesses.
Mitigation measures that can reduce hospitalizations, reduce workforce shortages, prevent delayed care (which can be more costly), protect immunocompromised, and high risk patients and staff, and decrease community transmission should be part of UCSF Health’s mandate which are firmly aligned with its mission and reputation as a world-class research and healthcare institution.
Additional recommendations
- Free PCR tests 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 free N95 masks to 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 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
Rationale
My proposed recommendations invites UCSF Health to invest in infrastructure and their people to protect everyone now and in the future. By integrating science-driven, evidence-based improvements that raise the bar above legal compliance, UCSF Health will be a leader that puts their commitment to equity, diversity, culturally competent care, and excellence into practice in tangible ways ensuring the wellness of the public.
I can already imagine the response to this letter: “We are not obligated to go beyond what is legally required,” “We do not have the resources or money to institute these changes,” “These changes will take years of planning and implementation,” and “Staff, patients, and visitors will object and this for privacy and civil liberties reasons and it will open us up to legal actions by them.” These are my counterarguments:
- Compliance to the law is a low bar. Real leadership recognizes that progress can only happen by being creative and having the foresight to go above and beyond what is expected; to have a vision for a more equitable and accessible world.
- When the pandemic first emerged in March 2020, institutions like UCSF Health responded with urgency and were able to find the money and resources to continue providing care (e.g., online appointments via Zoom). The pandemic is not over nor is it endemic; surges, outbreaks, and new pandemics will continue to happen and hospitals need to take a proactive approach to reducing risk that will also be cost effective and beneficial to all.
- Four years into the pandemic, there has been a preponderance of data on the efficacy of high-quality masks, vaccines, antivirals, and ways to improve indoor air quality. Hospitals, schools, and businesses had the time and information to make changes but simply haven’t. If we keep the same sense of urgency to adjust in response to a mass disabling event, institutions can summon the political will to implement changes as soon as possible. This is all dependent on the values and commitment by leadership.
- I am old enough to remember the controversy on campus when smoking in public spaces was banned when I was a staff research associate at the Institute for Health and Aging. People used to smoke inside hospitals. Handwashing during medical procedures took over a hundred years to become standard practice despite the knowledge that it would reduce the spread of pathogens which cost many doctors their careers for being early adopters. UCSF Health shouldn’t let the fear of pushback and resistance to uptake hinder its duty of care to their patients, visitors, and staff.
As the second largest employer in San Francisco with approximately 2.5 million outpatient visits and 42,000 inpatient discharges annually (FY 2022), UCSF Health can make a huge impact on the wellness of the entire region by instituting a robust set of COVID mitigations strategies that can become a national model for other healthcare systems.
For more: A CDC Update on the Draft 2024 Guideline to Prevent Transmission of Pathogens in Healthcare Settings
I look forward to your response and am available if you have any questions.
Alice Wong, a disabled patient that wants UCSF Health to do better
Categories
