Transparency is one of my obsessions, and as a CF dad I've long been proud of the Cystic Fibrosis Foundation for its national patient registry -- whose roots trace back to the 1960s. The registry keeps track of nearly every PwCF (person with CF) in the U.S., and the resulting insights have spread best practices around the realm. Moreover, the CFF's decision more than a decade ago to make publicly available certain aggregated data from each CF center is especially worthy of praise because it allows the CF community to hold its care centers accountable for the quality of the care they provide. (N.B. You gotta ask your center director for a copy of the center's most recent report -- I've noticed that care centers tend not to volunteer these things. Paternalism among CF caregivers ain't dead.)
Of course the registry is keeping track of the effects of Covid-19 on the CF community -- but, for some reason, the CFF hasn't been publishing the data publicly even though it is updated weekly. But I've got it -- and I think it should be public. So, here's the latest:
Note that "ALD" stands for "advanced lung disease." The good news is that seven deaths among 1,166 confirmed cases -- a death rate of 0.6 percent -- is significantly lower than the latest figure for the general U.S. population, reported in the New York Times, of 1.77 percent. The bad news is, of course, that seven people with CF have died. Also, the low death rate attenuates any claim that PwCF as a group ought to be given priority in the vaccine line.
