Hemophilia is a rare disorder, but it has one of the most notorious histories in the world, as far as disorders and diseases go. What is comparable? The thalidomide disaster of the late 1950s and early 1960s. The drug thalidomide was given to pregnant mothers to ease their morning sickness, and ended up causing horrific birth defects. It was banned in 1961. It was the medical establishment endorsed by the political establishment… sound familiar? Even more eerie, about 10,000 babies were affected worldwide. The same number as affected by the HIV scandal of the 1970s and 1980s in the US. (Watch a good documentary about this here)

A close second could arguably be the recent pandemic. Only this time the political establishment interfered with the medical establishment in putting guardrails in place. The World Health Organization estimates about three million died of Covid.

I was thinking of how the first two tragedies spurred their respective communities to action politically. Our hemophilia community led the charge, and forced political changes that made blood donations and our nation’s blood supply safer. As we approach a new political era, we need to remember and study history, and monitor political winds of change. They could be drastic.

I was thinking of all this yes, due to the upcoming change in presidents, but also as I was listening to music videos on YouTube. While seeking out new music to put on my iPod (I still use one) I came across this one—“Gone Too Soon.” I’m not a huge Michael Jackson fan—although I loved MJ The Musical—but never even knew that he made a song and video for Ryan White. Think of Ryan as our ambassador of Hemophilia and HIV. He was the face and name that represented thousands. A brave young man and a stoic and determined mother.

I feel badly that I didn’t know about this video and song. I’ve watched the movies and read a lot about this era. But I wonder, with all the new moms and dads joining the Facebook groups recently, do they know who Ryan White is? What the Hemophilia Holocaust is?

If they don’t, we need to remind them. Like our current politics, we need to be involved. And that means knowing our past, so we can determine our future.

Netflix offers The Ryan White Story—a must see for parents of and patients with hemophilia.