NHF has joined the Hemophilia Federation of America (HFA), the MPS Society, the National Gaucher Foundation and other organizations to support H.R. 1441, the Ryan Dant Health Care Opportunity Act.  We are pleased to report that the provisions of this bill were included as an amendment to the health reform bill, which was voted out of the House Energy and Commerce Committee.  That version of the bill will be combined with the bills that passed out of the other two House committees with jurisdiction over health reform (Education and Labor, and Ways and Means), and one final bill will be voted on in the House this fall. 

Introduced by Congressmen Kenny Marchant (R-TX) and Russ Carnahan (D-MO), H.R. 1441 will allow states to permit Medicaid-eligible individuals with annual lifelong orphan drug costs of at least $200,000 to continue receiving Medicaid benefits notwithstanding increased income. The bill will also allow states to waive annual earnings restrictions for individuals who have reached an annual cap of at least $1 million under their health insurance or benefits plan.  This means that a person with hemophilia who has annual factor costs of more than $200,000 a year could remain eligible for Medicaid even if he or she becomes employed.