“More of my friends are going to die.” The stark, somewhat nihilistic, message was sent before I could even process my own thought. But as a cancer survivor, the idea of a freeze on critical research sent a sinking hole into my chest. By the end of the night, my DMs were full of messages from other survivors and friends sharing similar fears and frustrations.
When a memo from Trump announced a freeze on all communication to the public and banned all travel for federal health agencies, there was a lot of confusion about what impact this would have on the U.S. National Institutes of Health (NIH) and other agencies. It was assumed at the time to mean the end of all NIH action, including clinical trials. NIH study sections and review panels, which allocate funding to future research endeavors, were canceled. But other actions, such as care at NIH clinics, existing NIH clinical trials, etc. were somewhat more in a confusing limbo.
This confusion has not been isolated to this order, a recent executive order blocking all federal aid “not directly given to individuals” recently left many in confusion. The order was originally interpreted as only Medicare would not be impacted, with medicaid, federal financial aid, headstart programs, etc. going intermediaries. The Trump administration walked this back, stating that it never would have impacted these programs-but many including the Governor of Illinois
(https://www.msn.com/en-us/news/politics/illinois-governor-says-trump-federal-freeze-affects-people-on-medicaid/vi-AA1y4cst?ocid=socialshare#details) stated there had been impacts already to Medicaid in their state. The order was blocked by a judge and then rescinded by the White House ( Federal grant freeze: Trump White House rescinds order | AP News
Some of my fears were manufactured by my own susceptibility to misinformation. A tweet (https://x.com/EricDKoch/status/1882893055222837321) falsely claiming that someone’s clinical trial had been cancelled due to the orders was later found by Snopes to be false. (Trump Didn’t ‘Cancel Cancer Research’ — But His Directives Paused NIH Meetings To Dole Out Funds) added to my fear of the direct and immediate threat to my friends currently in treatment.
While current trials continue, the impact long term is not to be understated. While the current order is to resume communication and meetings on the 1st of February, these meetings are often scheduled a year in advance and can be difficult to reschedule. Any interruptions to research and new progress has the chance to set us back. Disease progression can disqualify someone for a trial that could potentially save their life, and progression may happen slowly, or sometimes very quickly. A matter of days can change everything.
I can not understate what clinical trials have done for me. It gave me the years with my best friend that were deemed impossible at her original diagnosis. I participated in a clinical trial when I relapsed to add a different drug into my chemotherapy regimen which helped me get back into remission. And while it wasn’t successful for me, I participated in a clinical trial to prevent a common transplant complication which is now used for others. Clinical trials have saved lives, including mine. Watching an administration jeopardize the miles of progress we have made is heartbreaking, infuriating, and terrifying. For my life in the future, for my friends and family, and for the rest of my community.
And although the hope is that communication and travel will be restored on February 1st, the fear still continues. As of writing this, Trump’s nominee for secretary of Health and Human services has not been confirmed-but if RFK Jr. is confirmed, his views on public health and research is concerning for the future of cancer patients. During my treatment (and the treatment of many cancer patients) I became severely immunocompromised. During my transplant, I had no immune system, using chemotherapy to completely destroy it so the newly transplanted immune system could take over. RFK’s views on vaccines (Here’s RFK Jr.’s Record on Anti-Vaccine Views | TIME) are incredibly harmful, and if influence policies through the CDC or otherwise, could lead to the spread of disease that would have killed me if I had contracted during treatment.
While I hold a lot of fear for my friends during this time, I also hold hope in the fact that we can-and should continue to speak out against these harmful policies. And that research needs to be a bigger priority, which we can share with our voice, our vote, and by donating directly to disease research that we are passionate about.
Other sources: Trump hits NIH with ‘devastating’ freezes on meetings, travel, communications, and hiring | Science | AAAS