There is No Vaccine for Cystic Fibrosis Exceptionalism
Updated: Mar 17
Boy is this one going to get me in trouble.
I am a 62-year-old vaccine freak. By that I mean: If the FDA approves a vaccine, I want it. Today! That's certainly true of the Covid-19 vaccine. As a resident of New Hampshire with no underlying health conditions, I will (according to Governor Sununu) be eligible to sign up for a vaccine on March 22. I intend to pursue the shot relentlessly beginning on that date.
I'm also the dad of a person with cystic fibrosis and, in that capacity, I have been watching with interest what thought leaders in the CF community have been saying about Covid 19 vaccination. And I'm ashamed of much of what I've seen.
As the scion of a wealthy family, the offspring of a former NFL quarterback who started a foundation dedicated to fighting CF, and a student at an Ivy League graduate school that trains tomorrow's corporate titans, CF patient Gunnar Esaison has never been one to eschew the facile conflation of his privileged 'plight' with that of other CF people (who also tend to be white and privileged) and even with those who truly suffer discrimination and oppression. But his public demands that officials in New Hampshire and elsewhere put CF patients at the front of the line are just too much.
I'm not talking about Gunnar's blog post, in which he offers a play-by-play of his successful effort to jump the line in New Hampshire and get himself a first Moderna jab -- a classic tale of how having the time, the wheels, and the connections to keep calling and driving and cajoling will eventually pay off. Rather, I refer to the USA Today column he co-authored last month with Emily Kramer-Golinkoff, another person with CF whose family was sufficiently privileged (and persistent) enough to create a foundation to fight CF, known as Emily's Entourage.
Okay. Let me just pause here and stress that I love the Boomer Esaison Foundation and Emily's Entourage. Truly. I sent the BEF a check recently because it's the home of a scholarship fund that honors one of my CF heroes, the late Rosemary Quigley, a medical ethicist who died of CF. Emily's Entourage is dedicated to seeking medical breakthroughs for the ten percent of CF people who aren't eligible for the modulator drugs that have been such a miracle for everyone else with CF -- and my daughter is part of that ten percent who are still waiting.
But I can't stand it when people with CF, including my friends Gunnar and Emily, argue that they deserve better treatment than other people in the community just because they have cystic fibrosis. It's the CF equivalent of American exceptionalism -- the idea that because we in the U.S. are some kind of shining city on a hill, we are more virtuous and more deserving of deference than others.
Thus I cringe when I read Gunnar and Emily complaining in USA Today that they and others with CF are suffering from discrimination because other populations (chiefly, the elderly) are in most places ahead of CF patients in the vaccine line. "The insistence that we simply stay home denies our worth and value to society and treats us as second class citizens," they complained. "The effect is a perpetuation of systemic ableism and widening of pre-existing inequity among sick and disabled populations."
Ableism? Really? I'm certain that Gunnar Esaison has had to confront situations that could reasonably be characterized by that word. Every person with cystic fibrosis can tell compelling stories about that.
But check out the photograph on the landing page of the Boomer Esaison Foundation, which features a lovely image of Gunnar proposing to his sweetheart, on his knees while the two of them were skating on Occom Pond in Hanover -- a moment that somehow just happened to be captured by a professional photographer and later published on the front page of the local daily newspaper. Does this guy look like someone who has the moral right to chase a Covid-19 vaccine because of the hurdles that have been placed in his way by a cruel public health system that is indifferent to his struggles?
"In Pennsylvania, people with CF are waiting in line behind smokers and in Maryland, they are waiting behind cannabis growers," complained Gunnar and Emily. "Because of our condition’s small patient population size and our strict adherence to social distancing guidelines, states don't have complete information when it comes to the risks we face after contracting COVID-19. Imperfect data should not be used to set policy."
Okay, let's go to the data, straight from the national patient registry of the CF Foundation, as of last week:
Crunching the above numbers: About 16 percent of CF patients with Covid 19 have had to be hospitalized. That's well below the national average. The death rate -- 0.86 percent of cases -- is less than half the death rate for Covid-19 patients overall. In other words, the data suggests there is no basis for prioritizing people with CF for receiving the Covid-19 vaccination.
The CF Foundation has activated its grassroots advocacy network (of which I am a member) to clamor for putting people with CF in the vaccine line ahead of the general population, so in that sense Gunnar and Emily are just following their marching orders. But it's worth noting that the Foundation's position is more nuanced and reasonable than "put every person with CF at the front of the line now or else." The Foundation simply contends that people with CF should be vaccinated ahead of people with no health conditions. That's reasonable and evidence-based.
But the whole thing still feels unseemly to me. We are weeks away from the juncture at which the people will no longer need to be chasing vaccines because the vaccines will be chasing the people. The pandemic is already in the process of abating and with any luck will soon be just a memory. But I fear that people will not forget the way the CF community clamored, without evidence, for special treatment, and how the ultra-privileged few managed to jump the line.
[Full disclosure: A few hours after I made this post, I revised my discussion of ableism slightly in response to someone with CF who is obviously not afraid to critique her dad's work.]
[Full disclosure, updated: I revised this post on March 17 to reflect what I think is a more accurate statement of the CF Foundation's position. Thanks to my friends at the Foundation for reading my blog and being in dialogue with me about it. I appreciate their patience with their sometimes-intemperate friend and supporter, i.e., me.]