People With Cystic Fibrosis are NOT Expendable

Are we living in a world that is not adequately valuing our lives? We might be. Within the context of triaging care, our society is discovering that some of the very worst policies imaginable are still on the books.

“Policies and guidelines in five states — Alaska, Florida, Oklahoma, Vermont and Wisconsin — specify that patients with cystic fibrosis, a genetic lung disease that affects about 30,000 people in the U.S., should not be considered for a ventilator.”

Genetic discrimination is alive and well in this country.

It’s also not exclusive to the United States. It was reported that in the United Kingdom, “A [general practitioner] sent people with ‘significant life-limiting illnesses’ a letter saying they would “like to complete a DNACPR (do not attempt CPR) form” for them.” In other words, high-risk patients and families were being asked to sign what we call in the US a “DNR.”

The office that sent this letter likely did so because the National Institute for Health and Care Excellence (NICE), the English government’s arbiter on all things health related, had issued guidance in the middle of March to the nation’s doctors to inform triage decisions based partly on some patients’ underlying health via a rudimentary fitness evaluation called the “clinical frailty scale” (CFS). NICE suggests that if some patients score at or beyond the mid point, mildly frail, “there is uncertainty regarding the likely benefit of critical care organ support.” Physicians should further “take into account the impact of underlying pathologies, comorbidities and severity of acute illness on the likelihood of critical care treatment achieving the desired outcome.”

Thankfully NICE quickly back peddled after disability activists pushed back. It has since rewritten some of the guidelines. NICE now admits using CFS is not appropriate in all cases.

Triaging cystic fibrosis patients away from care has been one of my primary fears since the beginning of the coronavirus pandemic. I am confident in my ability (and yours!) to stay safe from coronavirus disease. After all… we are CF patients and family members. We KNOW HOW to stay safe in the world of infectious disease.

My fear lies in the possibility that we are denied the chance to survive severe illness in a setting where resources are scarce – whether it’s from COVID-19 itself or in a scenario where we need care for a classic CF complication.

It’s for that reason I have tried to stand up to this nonsense. I wrote an op-ed calling for representation in this crucial issue.

“It is essential that hospital and government policymakers include people living with life-altering health conditions and disabilities at the decision-making table. Our voices cannot be left out of the discussion that yields the triage and rationing guidance handed to front-line physicians – the people who must implement these unimaginable choices.”

I also brought my message to the airwaves last week to levy support for our nation’s disability advocates in calling for equality in triage decisions.

It seems as though Alaska, Florida, Oklahoma, Vermont and Wisconsin stand ready to deny us that opportunity.

It’s important to recognize that frontline care providers do not establish these guidelines; rather they are in most cases handed down to them by government officials, or in some cases unelected hospital administrators or the curious profession known as bioethics. If you want to know what some leading bioethicists think about this, look no further than the New England Journal of Medicine or the New York Times. In the former, they conclude it is “justifiable” to remove a patient from a ventilator or ICU bed for the benefit of another patient. In the latter, they say, “Rather than spending eight hours caring for one extremely ill person with a bad prognosis, a doctor will contribute more spending one hour each on eight patients who can survive.”

This ableist garbage is what keeps me up at night. How can “experts” who have never lived through such a situation deem themselves informed enough to make these choices?

Bioethics begins and ends where decision-making and clinical recommendation usurps patient choice and the FUNDEMENTAL RIGHT TO SURVIVE.

I can’t believe I am writing this blog, but here we are. Be damn loud and demand that your state governments, local hospital administrations, and bioethicists do not push you to the side in a moment of crisis.