While I try to keep my blogs on the nonpartisan side, I can’t hide the fact that I don’t like the current administration’s decisions to weaken personal freedoms, encourage divisiveness, and destroy our infrastructures. Many people agree that there’s plenty to be upset about: There were more than 1,400 Hands Off protests on April 5th with over three million people showing up to push back against policies implemented since the president was inaugurated. I attended the Boston rally (picture below) for several reasons, including the impact the government’s downsizing is having on the epilepsy community.
On March 27th, the Department of Health and Human Services (HHS) issued a press release stating the Centers for Disease Control (CDC) would reduce its entire staff by 26% to 62,000. Scientists and researchers focused on a variety of issues including environmental health and asthma, lead poisoning, blood disorders, violence prevention and access to vaccines were let go. Last week, Reductions in Force notices were also issued to staff at the CDC’s National Center for Chronic Disease Prevention and Health Promotion Epilepsy Program. This program offers basic information about what epilepsy is, tips on how to manage it, links to important resources, and a 24-hour hotline to call for questions related to epilepsy care.
Eliminating the program would be devastating to the epilepsy community. While it’s not clear that this program will be completely eradicated, the staff cuts will halt progress in preventing, treating, and managing epilepsy. This is crushing for the 30% of those of us with epilepsy whose seizures can’t be controlled with medication.
In response, Epilepsy Foundation of America is urging people to reach out to Congress to take action to reverse these CDC Epilepsy Program staff cuts and protect funding for the program moving forward. This link leads to an auto-generated form where you can write your senator and congressional representative. They are likely hearing from constituents about many things right now, which is even more reason to make sure the epilepsy community’s voice stays strong. I completed the form: I distilled my journey with epilepsy from its Seizing Control memoir-length to a paragraph and sent it to my senators and house representative. The task took a few minutes and generated an immediate auto-reply.
The National Institutes of Health, or NIH is another federal health organization that funds significant epilepsy research, including the BRAIN Initiative, which I recently blogged about. In February, the federal government significantly slashed NIH’s budget by limiting research funding for overhead expenses to 15%, which is far below what some institutions receive. This policy was blocked in court and last week a judge ruled that it is illegal, but NIH money is still being held up. The NIH funding halt impacts thousands of research projects, including studies focused on epilepsy.
Anne Giroux, whose 30-year-old daughter Lily has epilepsy is acutely aware of how NIH cuts slow down neuroscientific research and prevent people from accessing potential epilepsy cures. Lily was diagnosed with epilepsy as a child, which prompted her parents to establish Lily’s Fund for Epilepsy, in 2006. For ten years, the Giroux family hosted an annual Lily’s Luau community fundraising event, which raised over a million dollars for cutting edge epilepsy research. In 2018, they donated $100,000 to researcher, Dr. Avtar Roopra’s lab at University of Wisconsin—Madison, where the family lives. Dr. Roopra’s lab is looking for a new epilepsy cure by researching the connection between epilepsy and cell metabolism. The Lily Fund’s 2018 grant funded initial experimental research, which generated data that allowed Dr. Roopra to apply for and win two NIH grants, totaling $525,000 and put his team on the trail of a new treatment. “[The Lily’s Fund grant] really leap-frogged our research, Dr. Roopra said. “A $100,000 grant is enough to prime the pump, and then everything else flows from it.”
Dr. Roopra recently applied for a $3.3 million NIH grant to fund human trials of his potential new treatment, but the grant is on indefinite hold thanks to the federal government’s spending slashes. “With these cuts, that [funding] pipeline is going to be severed at the university level. Companies are not going to take on the risk of decades-long research without a financial return.” Dr. Roopra worries that even a short funding delay will prompt his research assistants and lab manager to seek new jobs, costing decades of experience and expertise.
Dr. Roopra’s words left me deflated, but not as exasperated as Anne Giroux feels in the face of the NIH funding halt. After all, her family’s foundation footed the initial bill for this experimental treatment with the hope that it might stop her daughter’s uncontrollable seizures. Now it is unclear when or even if Lily might have access to it. “When you have a kid with epilepsy and you see that this kind of holy grail, this potential treatment is sitting there within grasp but yet now unattainable, it’s frustrating…. To have the research just sitting there is unbearable.”
The halt in Dr. Roopra’s epilepsy research is one of thousands of stories being repeated across the country, as university scientists deal with federal funding cuts. The collective scientific progress lost is immeasurable, and medical research is only one of many issues impacted. Supplemental nutrition assistance, low income home energy programs, subsidized housing, and childcare assistance are among many programs that may be scaled back in the face of federal funding cuts. This is why over three million of us attended the Hands Off rallies last week and there are already more rallies being planned.
Leave a Reply