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By: Michelle Pascucci

Nathan Wilkes was asked to testify before the Committee on Energy and Commerce’s Subcommittee on Oversight and Investigations on October 15, 2009.  The hearing was called “Insured But Not Covered: The Problem of Underinsurance.”  It is a very poignant title because many people in the bleeding disorders community face issues with their insurance companies every day and fight to remain covered.  This subcommittee heard from Nathan and two other people.  They shared their stories of unfortunate, very common problems that insured Americans face every day.  The opening statements of the Congress members reflected horrible statistics.  Several members cited that 62 percent of bankruptcies filed in the United States are related to medical bills and of this 78 percent [of people] had insurance (Commonwealth Fund Report).

Nathan shared his story with the subcommittee.  His son, Thomas, has reached two lifetime caps and could hit one with his current insurer within the next couple of years, if he remains healthy.  He shared how his family has always been insured but because of the high cost of hemophilia treatment, it has affected the kind of jobs he can take.  When his son was first born his employer had to switch to a high-premium, high-deductible and had to increase everyone’s premiums.  Nathan recognized the huge financial impact premium increases were having on his co-workers and decided to start his own business. He currently has insurance for his family, but there is another lifetime cap which is just another hourglass this time with “a little more sand in it.” 

This is not an uncommon situation within the bleeding disorder community. Limits are placed on what jobs families can take.  The subcommittee seemed to really listen to each testimony. During questioning, Nathan received praise for his willingness to open up about his family’s personal struggles.  The Wilkes family’s financial struggles and remaining insured is something they worry about day-to-day.  In his testimony, Nathan expressed the importance of reform, but also stressed that the current reform plan may not create the necessary changes for years to come. There are people who need protections from lifetime caps and discriminatory practices immediately (see Eliminate lifetime caps immediately blog).  He stated that “one single significant event between now and then could destroy our currently tenuous security.” 

Prior to the witness statements, Representatives made opening remarks but concluded with questions and comments.  Representative Gingrey suggested that premiums should not be raised for families or individuals when care is needed. Some Congress members spoke of opening up state lines to increase competition.  Representative Dingell recognized the sad truth.  People must put limits on their career choices in order to remain covered, whether that means only working for large businesses or making just enough money to qualify for Medicaid.  The subcommittee seemed touched and moved by Nathan’s story. Hopefully they will take into consideration the many immediate reforms that the bleeding disorders community needs. 

You can watch the hearing and read Nathan Wilkes’ testimony on the following links:

Nathan Wilkes Testimony

Watch the hearing

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