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Sunday, August 16, 2009

Mr. President, Meet Hemophilia


You know all the intense town meetings with President Obama that have focused on health care reform? One was held in Denver yesterday, and our own Nathan Wilkes introduced President Obama to the attendees and to hemophilia. The New York Times writes:

"At a town-hall-style meeting in a high school gymnasium here on Saturday, Mr. Obama was introduced by Nathan Wilkes, whose family nearly lost their health coverage after costs to care for his 6-year-old son, Thomas, who has severe hemophilia, approached the $1 million lifetime policy cap....In introducing the president, Mr. Wilkes fought back tears as he described the birth of his son in 2003, and the first question the doctor asked: “Do you have good insurance?” Mr. Wilkes told of how he 'searched frantically' for a new policy when his son neared the $1 million cap, and how a social worker suggested that he and his wife divorce, so their son might qualify for Medicaid. Eventually they found coverage, with a $6 million cap."

Nathan and Sonji Wilkes are colleagues and friends: Sonji is a columnist for our newsletter PEN. They are both very active advocates for health insurance reform, and Nathan ran for a political office last year. Their son Thomas has an inhibitor, and Sonji is one of our peer reviewers for our new inhibitor book coming out last this year.

This was the town meeting in which Obama sited his grandmother's death, and in which the university student Zach Lahn asked how private companies could possibly compete with the government on health care insurance. The NYT writes that Obama replied, "'The notion that somehow just by having a public option you have the entire private marketplace destroyed, is just not borne out by the facts,' Mr. Obama said, adding that 'U.P.S. and FedEx are doing a lot better than the Post Office.'"

Congratulations to Nathan for his select role in introducing the president, and thank you for representing the entire community at such a crucial time.

Great Book I Just Read: The Brief Wondrous Life of Oscar Wao by Junot Diaz
This New York Times best seller and Pulitzer Prize winner traces the story of Oscar, a fantasy, Dungeons and Dragons and sci-fi fan who wants to be a famous author. But we meet his entire Domincian family, three generations of the DeLeons--Oscar's mother Beli, his sister Lola, his grandmother La Inca, and his friend Yunior-- and in exploring their troubled, complex relationship, we also explore the culture and history of the Dominican Republic. Diaz writes explosively, with a hip edginess, directed right at the reader. He weaves into the story the violent history of the DR, its language, its beliefs, its people, its culture, the "Fukú" --the curse-- and why Dominican men behave as they do toward their women. And Oscar is so un-Dominican: overweight, can't dance, no social skills. He longs for a girlfriend, and comes squarely up against a culture of machoism. As someone who has been involved with the DR for 12 years now, I learned a lot more about the island and its people than I already thought I knew. It's hard to characterize a culture but Diaz has adeptly done it in an entertainingly dark way. Four stars.

5 comments :

Anonymous said...

Where can we read more? How did Nathan get to be the person to introduce President Obama to the group? What was President Obama's response to the personal story that Nathan Wilkes told to the group? Did President Obama learn about hemophilia and inhibitors or did he just hear about it "in passing"? etc.

Laurie Kelley said...

I imagine that Nathan was chosen for two reasons 1) He is a tireless advocate in the state of Colorado for health care access, so the legislature knows him well. 2) He campaigned for public office, also tirelessly, so he is well known politically in the state. He is also well spoken, well educated about health issues and has a compelling personal story. All together, I'm sure it was a no-brainer to have him introduce Obama. I don't haev the answers to the rest of your question. You can contact Nathan directly through his website or through FaceBook.

Sonji said...

Families USA, a consumer advocacy group, contacted both NHF and HFA looking for someone in CO who had faced lifetime caps. Both national hemophilia organizations are familiar with our story and passed our information along. Families USA had been contacted by the White House.

Also, Nathan has done health care advocacy work beyond the realms of hemophilia and friends passed along our information as well. Basically...Nathan and I have been very vocal about our story in hopes that it can help others...somewhere along the way our big mouths were heard! :)

President Obama thanked us several times for sharing our story. He was very genuine and down to earth. He referred back to our story several times throughout his prepared remarks and during the Q&A of the town hall. We had only a very brief few minutes with him, so not a lot of time to do a hemophilia 101 with him. However, he did have a biography of Nathan in advance and further info about our story. There just wasn't time...

Feel free to Facebook either myself or Nathan. We're trying to get information up (between laundry, work, swimming lessons, back to school and ankle bleeds!)

Thanks-
Sonji Wilkes

Anonymous said...

I can't get to facebook. I keep getting an error. Maybe my employer has me locked out because it is a social networking site. I don't have my own internet service.

Laurie Kelley said...

I couldn't get into FaceBook today, too. It had multiple problems and failures. I think there is something wrong with the site today. Try again tomorrow? Laurei

 
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