Warning: This post contains personal stories about my family and the loss of loved ones. It may be triggering for some readers. It's also more than a bit political.
My dad died on February 4, 1992. I was 36 at the time and he was only 67.
He was a retired high school science teacher and an avid golfer. He had been diagnosed with an aortic aneurism, but thankfully it was caught before it burst. He was lean and fit going into surgery for the repair.
Earlier in his life he had contracted a type of skin cancer called Mycosis Fungoides. During treatment for the cancer, he had a blood transfusion which resulted in him contracting Hepatitis C. The treatments at that time did not cure Hepatitis C, but attempted to keep it under control, with limited success.
Unfortunately, following the surgery to repair his aortic aneurism, the Hepatitis C flared, resulting in a failing liver. He declined the option of a liver transplant. As a result, there was nothing else they could do but offer comfort as his liver, and then kidneys, failed. He died in the hospital just 2 weeks after the surgery. My brother, step-mother, and I were all at his bedside when he passed. It was a very sad time for all of us, and I still miss him to this day.
There are so many things that I wished a more mature me would have asked him, about his life and that of his 7 brothers and sisters. He was the youngest of 8 and the first to pass away.
You see, he left our family when I was 7 years old. And while my mother was great about making sure we kept contact with him as he pursued a master's degree in education at Columbia, it's hard to develop a close relationship when you only see someone once or twice a year for a short time. When I graduated from high school, I went to live with him and my step-mother in Florida where he was teaching high school science. I lived with him for 6 years as I attended junior college and then transferred to Florida Atlantic University.
He got me into playing tennis among other things, but the emotional gap remained and I was not in a place where I felt comfortable or sensible enough to want to know more about him and his early life and that of his own upbringing. There are so very many things that I wish I had asked him about.
I forgot to add this to the original post, but it is the one silver lining that followed my dad's passing: My wife and I had started dating in 1990. But by the time my dad had passed, we had broken up. I called her after my dad passed, only to learn that her dad had passed just a few weeks before mine. One thing led to another and we got back together and have now been married for 32 years.
So what does this have to do with NIH funding?
Well, today there is a cure for Hepatitis C. I recall reading about it several years ago and thinking "if only it had come sooner..."
In fact, the 2020 Nobel Prize in Physiology or Medicine was awarded to 3 scientists whose work in the 1970s, 80s, and 90s, led to the discovery of the Hepatitis C virus and, ultimately to the development of a cure. The work was funded in part by the NIH.
And in 1999, the NIH worked to establish Hepatitis C Cooperative Resarch Centers to "stimulate high quality, multidisciplinary, innovative yet systematic, collaborative research on hepatitis C virus (HCV). Such clinical and basic research is meant to provide further understanding of the stages and manifestations of hepatitis C infection, disease, and recovery. The HC CRCs also will have a mandate to build on new findings to explore new vaccine and therapy strategies."
I am grateful that we have researchers that push scientific boundaries, improving the health of those suffering from terrible diseases.
And now, the NIH is under attack
It's difficult to overstate the importance of the NIH to the development of scientific breakthroughs that affect our health and that of our loved ones.
Here are just a few recent articles (all are 'gift links') from the Washington Post and the New York Times about the funding cuts to the NIH that are being proposed and already underway by the current administration:
- Trump promised scientific breakthroughs. Researchers say he’s breaking science.
- NIH scientists have a cancer breakthrough. Layoffs are delaying it.
- Internal budget document reveals extent of Trump’s proposed health cuts
- Women, minorities fired in purge of NIH science review boards
- What Is Actually the Point of Treating the N.I.H. Like This?
How many kids will lose their parents too early?
Reflecting on my own experience, I can't help but imagine that new scientific breakthroughs for other diseases — I'm thinking about dementia-related diseases like Alzheimer's, among others — will cause children to lose their parents far too soon. It's simply heartbreaking.
The remarkable level of shortsightedness it tragic
To say that our current government is run by clowns, sadly, is disrespectful to clowns. Clowns are clever and smart. This administration is anything but.
And then there is my brother, who passed in 2019
As if losing my dad was not enough, I lost my brother to pancreatic cancer in 2019. He was only 66. That was even more gut-wrenching than losing my dad. My brother and I were very close, even though we lived 3,000 miles apart. He was a brilliant engineer, working at the Federal Aviation Administration for 31 years.
Pancreatic cancer is a horrible killer in that it is often caught late. By the time symptoms appear, the cancer is typically quite advanced. Chemotherapy can buy some time, but it is not a cure.
It was a mere 6 weeks from diagnosis to his passing. I was blessed to spend these last weeks of his life with him. It was the longest time we had spent together since we were in high school.
I wrote a piece on the 1st anniversary of his passing.
Research into pancreatic cancer is at risk
While progress is being made to fight pancreatic cancer as evidenced in this UCSF article from 2024, funding cuts are underway, according to Pancreatic Cancer Action Network, a not-for-profit organization dedicated to fighting pancreatic cancer. Here's how they describe the current situation.
Conclusion
Needless to say, I find all this pretty fucked up. While I am very grateful that cures and developments are being made for diseases which affected my family directly, I feel deeply saddened that too many others will suffer and die because of the shortsightedness of our current government.
UPDATE: Just after publishing this, the latest episode of Malcolm Gladwell's podcast, Revisionist History, was released. It's a deep and disturbing dive in to RFK Jr's false claims about a childhood vaccine that saves over 150,000 babies each year.
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