2008: Costs Remain Problematic

Karen and George Bishop live in Findlay, Ohio, with their 16-year-old son, Michael, who has hemophilia B (factor IX deficiency). Michael is allergic to factor IX and needs high doses of an expensive bypassing agent to control his bleeding. Even with treatment, Michael has suffered many breakthrough bleeds, some requiring hospitalization.

“I would like to think that I always give Michael factor when he needs it … that I don’t hold back because it is a huge expense and will ultimately mean that I leave yet another job.”
– Karen Bishop

The Bishops have always understood that raising a child would entail many challenges. However, one of the most vexing and unexpected challenges they have had to face is dealing with lifetime insurance caps. Karen, who works as a nurse, has already had to leave several good jobs because Michael’s care had exhausted multiple insurance caps, which averaged about $2 million each. In one case, Karen left what she describes as “the job of a lifetime,” with “good pay, great working conditions, great benefits, many friends and a job that I loved.” At first she avoided telling her son why she left such a great job, but eventually he confronted her and she knew she had to tell him the truth. Since then, Michael has bounced between his mother’s insurance and his father’s and then back again. Each came with a cap that would inevitably be exhausted, leaving the Bishops to scramble one more time for a way to make sure that the care their son desperately needs would be covered.

The National Hemophilia Foundation (NHF) is working in coalition with a broad range of patient organizations, industry representatives and others to advance legislation raising lifetime insurance caps to a minimum of $10 million. The bill was first introduced last year and was recently reintroduced as S. 442/H.R. 1085, the Health Insurance Coverage Protection Act, by Sens. Byron Dorgan (D-N.D.) and Olympia Snowe (R-Maine), and by Rep. Anna Eshoo (D-Calif.). On Feb. 26, more than 300 members of the NHF and other bleeding and clotting disorders organizations went to Capitol Hill to urge their elected officials to support this important legislation.

 
All of the groups working to advance the legislation believe that the time is right in Washington to see this problem meaningfully addressed. In the meantime, families such as the Bishops feel the looming presence of their insurance cap every time their son infuses. “I would like to think that I always give Michael factor when he needs it,” said Karen. “I would like to think that I don’t hold back because it is a huge expense and will ultimately mean that I leave yet another job.”