In front of a crowd of more than 1,600 people, Nathan Wilkes turned the spotlight on bleeding disorders and the insurance issues many of us face. On August 15, 2009, in Grand Junction, Colorado, prior to introducing President Barack Obama at the Town Hall Meeting, Nathan, whose son Thomas, 6, has severe hemophilia, had the opportunity to speak briefly about his family’s struggle with their insurance provider. While many people are talking about the uninsured, Nathan’s comments helped to highlight another segment of the population who hope to benefit from healthcare reform, the underinsured. Nathan shared his story of reaching the lifetime caps on both his employer-sponsored plan and the state high-risk pool’s plan, and being advised by social workers to obtain a divorce so his wife could qualify for Medicaid. Ultimately his only option was to become self-employed to take advantage of legislation regulating insurance coverage for small businesses.
Five days later Nathan and his wife, Sonji, then appeared on MSNBC’s “Dr. Nancy” show. The show’s host, Dr. Nancy Snyderman, features stories on pertinent medical issues. She explained to her audience that the Wilkes family is interesting because they are not the typical “poster children” for those struggling with healthcare expenses in our country. Instead, the Wilkes family has always had insurance, yet they have had to face many struggles and make difficult choices because of the cost of Thomas’s care. Nathan also explained that the cost of his son’s care also had an adverse effect on his fellow employees, causing premiums and deductibles to increase for everyone.
The bleeding disorders community is fortunate that Nathan is willing to share his story, which led to national exposure for the plight of people with bleeding disorders. Nathan and Sonji have attended NHF’s Washington Days and have been featured in various NHF publications. They have appeared on other programs and been quoted in several news sources.
As the healthcare reform debate continues, NHF wants to ensure that the needs of those affected by bleeding disorders are considered. We want to be ready for media exposure that will allow us to put our issues in the spotlight. In order to do this effectively, we need more stories. If you or someone you know has a bleeding disorder and has had problems with health coverage or access to care, please share your experiences with us. Your story is important, so please share it with those who can make a difference.