As scientists test rare disease drugs for Covid-19, advocates warn about access

As scientists explore using rare disease drugs as possible therapeutic options for Covid-19 — at least 17 such drugs are being tested — advocates are increasingly warning about the high price tags that often accompany them. Because drugs for rare diseases earn an "orphan drug" status from the FDA, companies that make these medicines also get to retain the exclusivity that comes along with that designation. And even if these drugs are later used for conditions that could help a broader group of patients, the expensive sticker price remains. “The nightmare situation really is [a] breakthrough, extremely effective Covid-19 treatment that‘s priced so high that hospitals and patients can’t access it,” pediatrician Kao-Ping Chua tells STAT's Amy Sokolow, who has more for STAT Plus members here.

Here's what else is new with the pandemic:

A small study of interviews with 33 home health care workers in New York City found that these workers — the majority of whom were Black women — felt like they were on the frontlines of the pandemic, but invisible. “We’re definitely a forgotten field...You hear people clapping, thanking doctors and nurses, even the hospital cleaning staff... I’m not doing this because I want praise; I love what I do. But it would be nice for people to show us gratitude,” one of the interviewees shared.
In other news out of New York City, its health commissioner Oxiris Barbot resigned in protest yesterday after clashing with Mayor Bill de Blasio over his handling of the response to the coronavirus outbreak. Among the points of contention was the mayor's decision to move contact tracing efforts from the public health department to Health + Hospitals, the city's public hospital system. A former senior leader of that system has since been named as Barbot's replacement.
Along with the Rockefeller Foundation, the governors of Maryland, Louisiana, Massachusetts, Michigan, Ohio, and Virginia announced that they are banding together to offer 3 million antigen tests — 500,000 tests per state. These tests can deliver results in 15-20 minutes, and the hope is that deploying these tests will help the states quickly identify and contain outbreaks.