In February of this year, Michael Gentry had finally made a breakthrough. Gentry, a biochemist at The University of Kentucky College of Medicine, was racing to run animal experiments on a new enzymatic compound that fights Lafora disease. The promising drug was on track to enter human trials early in 2021.
Lafora disease is a neurodegenerative condition characterized by intellectual decline and recurring seizures. The disease is usually diagnosed in adolescence and manifests in a way similar to Alzheimer’s disease: loss of memory, diminished judgement, and confusion. “Your child sort of disappears in terms of who they are,” writes Frank Harris, president of Chelsea’s Hope, a nonprofit dedicated to Lafora disease. “It’s very similar to what you would see with an elderly Alzheimer’s victim. Imagine seeing it with a 16-, 18-, or 20-year-old child.” Patients usually survive for only 10 years after symptoms appear.
For Anissa Marriam, a vibrant and intelligent 22-year old with Lafora’s disease, Gentry’s research was something to watch. Her mother writes, “I was given a death sentence for my daughter ten years ago and sent home. They gave me hope that I will not have to bury my daughter.”
For Anissa and other patients with the rare Lafora disease, this was so much more than another clinical trial, it was a real chance for a life past their 30th birthday.
For Anissa and other patients with the rare disease, this was so much more than another clinical trial—it was a real chance for a life past their 30th birthdays.
But then the pandemic hit. Gentry’s lab, along with 77% of other labs in the United States deemed “non-essential,” was shut down to reduce the spread of COVID-19. Gentry’s animal experiments came to a jolting halt, and the timetable of Lafora treatment was postponed indefinitely.
Many of us asked what difference a few months delay really makes. Karen Burns, researcher at the Li Ka Shing Knowledge Institute, explains that, for every progressive disease, there is often a short time period to act after which the condition is no longer salvageable. And the scary part is that, for less-understood diseases, nobody knows this exact “point of no return.” By the time the Lafora trial is up and running, there’s a chance that Marriam’s case will have progressed too far for her to participate. For cases like hers, the passage of time—even a few short months—can be devastating.
Anissa is not the only one. Hundreds of thousands of people are dependent on experimental treatment. Just among active clinical trials, over 440 studies have been suspended, a quarter of which were experimental cancer treatments. According to NPR, this affects over 200,000 people. It is frightening to think of how many patients potentially missed their chance at a clinical trial because of delays in research on their condition.
Although it is easy to see how these delays affect individual patients like Anissa, the repercussions of stalling medical research will extend well into the future.
The head researcher of a diabetes lab at the Molecular Cell Biology section of the National Institutes of Health (who requested anonymity), has been teleworking since stay-at-home orders beckoned in March. Wet-lab experiments like the ones done at her lab are impossible to continue from home. But, even worse, restarting these experiments once researchers return is no simple task.
The diabetes lab works with mice, bred over many generations to ensure specific genotypes. However, upon COVID-induced shut-downs, labs are being encouraged to euthanize thousands of mice and other organisms used in experiments. Tissues and cells that have been carefully cultured cannot be maintained without daily supervision. Work that scientists have dedicated years to has all been lost. Rebreeding mice and restarting these experiments will likely take months—potentially longer. For studies like the ones done in this diabetes lab, it is clear that the end of the shutdown will only be the beginning of a long road to recovery.
Further, the halting of “non-essential” research has had significant impacts on burgeoning researchers and students as well. A professor of neuroscience at Georgetown University (who wished to remain anonymous) commented on how hard the pandemic has hit students early in their research careers. There are “fewer opportunities for training new researchers (undergraduates, Master’s students) who need more close interaction with current lab members, given the new requirements for social distancing in the lab.” Additionally, funding is getting more difficult to obtain because most resources are currently directed towards the pandemic. For new researchers whose careers depend on quickly gathering data and publishing, the loss of financial support may mean they will never get a chance to restart. Cullen Taniguchi, assistant professor at University of Texas MD Anderson Cancer Center warns that “we may lose a whole generation of researchers because of this.”
The cost of these delays on medical research begs the question of how we decide what research is “non-essential.” Shouldn’t everyone have an equal chance at a life—whether they have COVID-19, Lafora disease, cancer, or any other serious condition? Duke University School of Medicine defines non-essential clinical research studies as ones that hold the prospect of direct benefit to a participant. To me, these definitions are vague and unhelpful at best. Every research study is ultimately aimed at directly benefiting people, regardless of whether it is at the clinical trial stage or still in preliminary stages. Research, by its very nature, is unpredictable;it is often impossible to predict if research will be successful until it is complete. On the other hand, I understand the importance of mobilizing research efforts to the pandemic, leaving us with no choice but to make these hard trade-offs. Yet deciding that certain studies are more important than others seems equivalent to telling Anissa Marriam, or anyone else, that their life isn’t important enough to try and save.
The future of research for all stakeholders—patients and caretakers, scientists and students—is uncertain at best. All that is clear is that there are thousands of people without coronavirus who could still die during this pandemic.
Edited by Tyler Schutt