When I was 15 months old, my parents were told I would not live to see my second birthday. I had been diagnosed with Pompe disease, a rare genetic disorder that weakens the muscles responsible for movement and breathing. At the time, there were no treatments, not even a cure. I was supposed to die by the time I was 2 years old.
But my father refused to accept my fate. He launched a mission to find researchers, raise awareness, and push for medical breakthroughs. His determination and the tireless work of scientists and doctors eventually led to treatments that gave me, and so many others, a chance at life.
That is what medical innovation should be about: saving lives. Advancing cures. Giving hope where there once was none.
This should be the guiding mission of the U.S. Department of Health and Human Services (HHS). We expect our public health agencies to focus on devoting their vast resources and influence to discovering new therapies, improving care for the disabled, and curing diseases like mine. Instead, what we've seen this fall is the Food and Drug Administration (FDA) and HHS expanding the number of unborn children who die before ever taking their first breath.
As the government was shutting down on Sept. 30, the FDA quietly approved a new generic drug designed solely to end the lives of unborn children. This came just one week after the same agency warned pregnant women not to take Tylenol due to concerns about the well-being of the babies they carry. The contradiction is stunning. The FDA should be protecting life, not approving new methods to end it.
Abortion drugs already send thousands of women and girls to emergency rooms every year, with as many as 11 percent suffering serious adverse effects such as hemorrhaging, infection, sepsis, and even death. A new abortion drug will only increase those harms. Even more disturbing, a new form of domestic violence is on the rise: coercion and poisoning of girls and women by abusive boyfriends, husbands, and even fathers, who can obtain these drugs through the mail. Yet HHS and the FDA look the other way.
Recommended
This is not making America greater or healthier. Abortion is the leading cause of death in the United States, largely because of abortion drugs, which now account for at least 63 percent of abortions. Every new pill approved for this purpose increases that toll.
President Trump has been clear that states have the right to pass and enforce pro-life protections, but that right is being trampled by the abortion industry, empowered by HHS and the FDA. By keeping Biden-era policies in place that removed the in-person doctor visit required for abortion drug prescriptions, the federal government is enabling officials like Gavin Newsom and Kathy Hochul to protect people who mail abortion drugs across state lines in violation of pro-life laws.
Meanwhile, Secretary Kennedy himself recently admitted that the Biden administration "twisted the data to bury one of the safety signals" around abortion drugs. His agency even confirmed plans to study the risks just prior to approving the new generic drug. If that is true, then why has the FDA not reversed course? Why does it continue to allow abortion drugs to be sent through the mail without in-person medical oversight?
The agency must immediately reinstate the safeguards that were in place during President Trump's first term. Every day it delays, more unborn Americans die, and more women and girls end up in emergency rooms with serious complications.
When I look at what HHS is doing now, I cannot help but think about what would have happened if society had decided my life was too burdensome or too complicated to save. Pompe disease is not easy. I have never walked on my own. I have not breathed without a ventilator in over 20 years. My care requires constant attention, around the clock. But I am here. I am alive. I am thriving. And I am contributing to a world that almost decided people like me were not worth the effort.
What if, instead of working to expand abortion access, HHS directed that same passion and funding toward curing rare diseases? What if every life, no matter how small or how different, was seen as worth fighting for? That is the America I believe in, one where we measure progress not by how easily we can end a life, but by how hard we work to preserve it.
I owe my life to a medical community that believed in possibility. I want future generations, especially those born with challenges, to inherit a country that still does.
It is time for HHS and the FDA to remember their mission: to protect health and human life. Adding another life-ending drug to the market does neither. True leadership would mean reversing course, reinstating safeguards, and returning to the work that truly makes America healthier: saving lives, not ending them.
Because when we start deciding that some lives are not worth saving, we lose the very heart of what it means to be human.
Megan Crowley, born with Pompe disease, is now a 29-year-old Notre Dame graduate who also achieved her master's in social work at UNC Chapel Hill in 2021. She now works full-time for Make-A-Wish as Assistant Director of Mission Integration. Megan and her father's story was chronicled in a book, "The Cure," and inspired the movie "Extraordinary Measures" starring Harrison Ford.
Editor’s Note: Do you enjoy Townhall’s conservative reporting and opinion? Support our work by joining Townhall VIP! Use the promo code FIGHT to get 60% off your VIP membership!
Join the conversation as a VIP Member