The Ryan Dant Health Care Opportunity Act (H.R. 5748) was re-introduced as H.R. 1441, on March 11, 2009

The Ryan Dant Health Care Opportunity Act, was re-introduced as H.R. 1441, on March 11, 2009. As you will recall, this legislation would allow states to permit certain Medicaid eligible individuals who have extremely high annual lifelong orphan drug costs ($200,000 and above in a 12-month period) to continue on Medicaid notwithstanding increased income. There are also other specific qualifying factors.

Thank you to those of you who responded to my plea for personal stories dealing with this exact situation. We will definitely be using them as we move forward.

The Health Insurance Coverage Protection Act, which would change the lifetime caps, was re-introduced by the House and Senate on Friday, February 13, 2009. In the Senate, the new number is S. 442, which was introduced by Senators Dorgan and Snowe, so it is bipartisan. In the House, the new number is H.R. 1085, which was introduced by Representatives Eshoo, Langevin, Sutton, Altimire and Kildee.

Once again, I would like to ask all of you to help with these two pieces of legislation. Writing and contacting our legislators is the best possible way for our voices to be heard. We want to ask them to co-sponsor this legislation. For your convenience, I have included in this edition, sample letters that you may use. One can be used for either your Senators or Representatives. The other one is to thank them after they have responded. In addition, we have included a list of the Health Subcommittee. Please contact any or all of them about H.R. 1441, as well as, H.R. 1085. Also, please pass this information on to everyone you know and don't forget about your address books and email groups. These are wonderful ways to "spread the word"

In an effort to prevent writing legislators who have already agreed to co-sponsor this legislation, we will try to post their names on our website at least once or twice per week, and more often if necessary. If you have any questions or need additional information, please give me a call at (800)504-3189. Thank you in advance for your help with this legislation that affects the Gaucher community, as well as, other disease communities.