I actually had a pretty good day yesterday—despite my general sense that everything’s on fire around me, some good things did happen. I realized that it’s important not just to talk about all the horrifying things, which seem to be flying forth at impossible speed, but also acknowledge that there are good things happening, too.
We have a LOT of people speaking out in this country. Doubling down, and standing up for their family members, friends, neighbors, and strangers to let them know that despite what might be said in a memo or an executive order, they matter and they cannot be erased.
We’ve also had a few legal wins since my last update:
–Tuesday a federal judge ordered that several health-related datasets and webpages that have been removed must be restored to their state on Jan 30, by 11:59pm that night. This came after a lawsuit by Public Citizen Litigation Group on behalf of Doctors for America. The plaintiffs had argued that scrubbing website content and datasets related to HIV monitoring and prevention, sexual health, contraception, intimate partner violence and gender identity from public websites hampered doctors’ ability to find the information they needed to treat and diagnose patients. A number of specific pages and datasets were specifically required to be restored, including the Youth Risk Behavioral Surveillance System (which I referenced in my last post on 2/10), the CDC’s Social Vulnerability Index (which has information that allows “public health officials and local planners better prepare for and respond to emergency events with the goal of decreasing human suffering, economic loss, and health inequities), the CDC’s Environmental Justice Index (which delivers “a single rank for each community to identify and map areas most at risk for the health impacts of environmental burden”), and specific webpages about HIV post-exposure prophylaxis (PrEP), HIV testing, Assisted Reproductive Technologies procedures at fertility clinics, and pages about enrolling more women and more people from other underrepresented populations in clinical trials—and more. This is great news, although the restoration is limited. As of yesterday morning many websites by CDC, FDA, and others were still down, including (just as two quick examples) one about transgender people and HIV, and another about guidance related to mpox vaccination. Public health professionals are now organizing to catalog the CDC, FDA, and other federal websites that were live on Jan 30 but are still missing or altered. It’s a long list, and we can expect this isn’t the end of the discussion or legal wrangling to get science-based public information restored.
–Shortly after I posted on Monday, the Federal Court in Massachusetts issued a temporary restraining order (TRO) preventing the cuts to the NIH indirect rate in 22 states involved in a lawsuit to stop the change. Yesterday, that TRO was expanded to a nationwide pause. This is temporary, and this will be a court hearing on February 21. We can (and should!) have a real discussion about where NIH indirect rates may be bloated or otherwise needing more transparency. Most health researchers will tell you stories about their frustrations with large and unequal indirect rates across different institutions. But slashing $4 billion in indirect rates from all NIH grants overnight puts 400,000 U.S. jobs at risk (citation if you don’t believe that number: https://www.unitedformedicalresearch.org/annual-economic-report-toolkit/#report-graphics) and endangers our country’s progress in finding ways to cure or treat cancer, diabetes, heart disease, and HIV. So for now, there’s room to breathe. But you can bet that universities, hospitals, and other major research centers are preparing for the fight of their lives right now, to protect our ability to do cutting-edge health scientific research in US.
So, there are good things happening. But also lots of bad things are still happening that will harm the health of people in the United States (and around the world) for years to come. This is going to be a marathon, so we need to acknowledge and appreciate the wins and use it as fuel to keep fighting for the country we want to be living in!