Presidents Who Know Hemophilia


You could say England is lucky: they have the best hemophilia publicity in the world. Their longest reigning monarch, Queen Victoria, had a son with hemophilia and so gave hemophilia a place in royal history, hence the “royal disease” nomenclature. And she exported hemophilia. Germany, Spain? Not a problem: hemophilia went straight to the royal families. Russia? The Crown Prince had hemophilia and while his life was cut short, he went down in history, as did hemophilia.

We’re not so lucky. The US has a publicity problem with hemophilia, not counting the Dark Ages when hemophilia was so closely linked to HIV. As it’s president’s day, it got me thinking: have any presidents known about hemophilia or known someone with hemophilia?

Prior to Ronald Regan, we don’t know. Regan seems to be the first to take notice of hemophilia, despite dire warnings from CDC in the early 1980s, when HIV was showing up in those with hemophilia. It took Regan’s Hollywood buddy Rock Hudson, who contracted HIV and stepped forward into the limelight in 1985, for Regan to finally take action on the nation’s blood supply and help stem the contamination.

Thanks to our great community activists, we wanted to keep hemophilia in the presidential eye, but it took a back seat once the HIV problem was controlled and recombinant products available.

Then came insurance problems. Big time. While campaigning, Obama, looking to connect on the insurance issue, was introduced personally to hemophilia through a Denver Town Meeting, where he made Nathan Wilkes–not just met him, Nathan introduced Obama to the televised Town Meeting! Nathan and Sonji Wilkes’ son Thomas has a high inhibitor and their medical bills were catastrophic. I know the WIlkes personally, and their story is incredible.

Apparently, Obama thought so too. He referred to the Wilkes family several times in the campaign. Obama is getting to know hemophilia. Just last summer, Obama had a photo op with HFA president Paul Brayshaw (hey, I know him too), in Paul’s back yard. Paul has fun telling about the secret service arrangements in preparing his humble abode for the arrival of the leader of the most powerful country on earth. Paul has hemophilia and Obama showed again support for our community.
Which presidential contender knows hemophilia? So we have Obama. Newt Gingrich actually does know hemophilia. He took up hemophilia as a study back in 2003-4, before the insurance crisis. Why? My good friend Dave Maderios, founder of Factor Foundation of America, hired Newt to examine hemophilia as a case study in chronic disease management and why the American system has it all wrong. And I got to spend a day with Dave and Newt, discussing issues regarding reimbursement. Newt was knowledgeable about hemophilia, reimbursement and had ideas on how to fix it.

It’s not looking too hopeful for Newt at this point, but should he get elected, he would be the first president to have in-depth knowledge of the hemophilia community. Mitt Romney, our former Massachusetts governor? I don’t know. He wasn’t in our state too often as governor! But as he launched the first mandated health insurance plan in the US in our state, something tells me he’d make a quick study of it all.

Publicity; I just keep praying that Brangelina’s next set of twins have hemophilia.

Happy president’s day!

March is Hemophilia Awareness Month


March is a wonderful time for promoting and educating the public about hemophilia–it’s our official month! NHF just had Washington Days, which I, yet again, could not attend! I heard it was great; at least my friends all went and had fun without me.

While googling March and hemophilia, I came across this great PSA by Newt Gingrich and sponsored by Factor Foundation of America, the nonprofit founded by my friend Dave Madeiros, who passed away five years ago, Feb. 29. Dave was a visionary, light-years ahead of his time. How different things would be if he were with us today. View this–still relevant even now.

http://noolmusic.com/google_videos/newt_gingrich_and_hemophilia_awareness_month.php

It’s a great month because our boy from Zimbabwe, Elton, had surgery on Friday in Chicago and is doing great! See photos of this child from an impoverished home, who has lost his father, 29-year-old brother to TB, and 25-year-old sister from meningitis just this past year, and who suffers from the devastating effects from untreated bleeds. He is doing great and is going to be fine. I am flying out to see him on the 25th, days before he is scheduled to go back home. There will be a lot of tears then, as everyone has fallen in love with this gracious and gentle young man.

And it’s a great month because a little 8-year-old orphan with hemophilia A in China, who is without home, parents and treatment, is having a lot of people inquire about adopting him! I have great faith he will find a home with a wonderful American hemophilia family. I am not allowed to show his photo, but he is adorable. Thin, wiry and mischevious, just as a boy should be.

Please share your activities for Hemophilia Month and please go to the blog about Elton and leave a comment! I am sure Elton would love to hear from you as an American!

http://www.chris-tocentric.com

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