The following is expanded from remarks prepared for oral testimony at the April 22 hearing. I am adding information from the hearing testimony of the Massachusetts Coalition on Health Equity. Additional information is drawn from the Bay State Banner article on the hearing.
A hearing on the proposed guidelines for ventilator distribution and ICU beds in the event of a shortage and ensuring that health inequities do not dictate medical care during the COVID-19 pandemic.
BOSTON CITY COUNCIL COMMITTEE ON PUBLIC HEALTH HEARING ON DOCKET #0638
Testimony of John B. Kelly, Director of Second Thoughts MA
April 22, 2020
My name is John Kelly, I am the director of Second Thoughts MA, a grassroots group fighting policies and actions that place a lower value on the lives of older, ill, and disabled people. Second Thoughts MA is the state affiliate of the national disability rights group with the same mission, Not Dead Yet, of which I am New England Regional Director.
Thank you Councilors Ricardo Arroyo and Andrea Campbell for bringing this issue before the Council. Thank you for facilitating testimony against any life expectancy criteria determining who does and does not get a ventilator in case of scarcity.
I appreciate the advocacy of groups like the Disability Policy Consortium, Justice in Aging, Greater Boston Legal Services, and others in persuading the state to revise its Crisis Standards of Care to be less discriminatory against older, ill, and disabled people. But the state has not dropped its plan to base triage decision-making on five-year expected survivorship. It must do so.
As Justice in Aging wrote in its letter to Gov. Charlie Baker,
The use of certain factors correlated with age, such as estimates of number of years remaining and prognosis for long-term survival, discriminate against older adults for receiving life-saving treatment when supply is limited.
A group of doctors, the Massachusetts Coalition on Health Equity, testified at the hearing that the revised guidelines are just a start.
“These guidelines still do not go far enough to truly protect marginalized populations like communities of color and patients with disabilities,” said Mass General emergency room Dr. Alister Martin.
Dr. Martin said that the guidelines still include reference to patient’s “medical history” and “underlying conditions,” which will disparately impact disadvantaged groups.
Anita Cameron, Director of Minority Outreach for Not Dead Yet, recently wrote a blog on the structural racism of our healthcare system
Our Healthcare System is inherently racist. Blacks receive inferior care to that received by whites, particularly in the areas of cardiac, diabetes, and pain management. Blacks are more likely to die because doctors have overlooked something critical or will not listen to or believe what we have to say about our health and pain.
It’s outrageous that minorities with health conditions caused by the system could again be discriminated against in terms of expected five-year survival.
Dr. Onyekachi Otugo, an emergency medicine doctor at St. Elizabeth Hospital, testified that there are thousands of people walking around who were told years ago that they had less than 5 years to live. She emphasized that 5 years is a long time, and that the state must not be differentiating between people in its decision-making.
People with disabilities have stories about our longevity being underestimated and undervalued. For example, the late Harriet McBride Johnson titled her book “Too Late to Die Young,” because doctors had been telling her since she was a child that she would be dying within a few years.
Two years ago, a chest cold led to the collapse of my left lung. I was rushed to Boston Medical Center, intubated and diagnosed with necrotizing pneumonia. It took 3 weeks on a ventilator and dedicated care, but I recovered. It was described as a miracle. If I were to present with similar symptoms in a triage situation, I’m afraid that implicit bias would rate as low my chances of living 5 years. I’m afraid that estimates of my immediate survival would also be biased. Would my previous history of pneumonia count against me? I think my survivorship should count in my favor because my lungs were resilient enough to overcome the odds.
Going forward, the doctors testified that triage protocols must be developed transparently, with public access to real-time data. Dr. Lana Habash, a family medicine doctor at Boston Medical Center, said that there needs to be community oversight, including representatives of people who are uninsured or homeless.
It is hopeful that Massachusetts will avoid a crisis shortage of ventilators, but we must continue to make sure that the voices of marginalized people are reflected in the policies of the state.
Well said, my friend