Since the IDF 2009 National Conference in late June, things in Congress have heated and speeded up quite a bit. For those who attended the Advocacy Breakfast at the National Conference, you will remember that the message of IDF was to include the provisions of our Medicare Patient IVIG Access Act HR 2002 & S 701 in the health care reform proposals in the House and the Senate. To that end, we have been persistently trying to make that a reality.
Right now, the House and Senate are in recess for the month of August. What that really means is that the work continues. Members of Congress are home listening to the people in their communities. Congressional staffs continue to research and understand the various issues. IDF continues to spread the message that health care reform must be accessible, affordable and provide coverage for people with rare diseases including the primary immunodeficiency disease (PIDD) community.
While the three House committees have reported a bill out of their respective committees before the August recess, the House Energy and Commerce (E&C) committee still has work to do. There were 60 amendments that had been filed by E&C committee but were not acted upon because of time constraints. One of those amendments, filed by Rep Matsui of California, has everything to do with the PIDD community.
Rep Matsui’s amendment allows Medicare Part B to pay for all of the nursing services necessary for IVIG home infusion for patients with PIDD for 3 years beginning January 1, 2010 until January 1, 2013. It also mandates that several reports be made to the Congress regarding reimbursement and whether home infusion helps patients with PIDD to access the appropriate care they need. Current law prohibits Medicare from paying for any nursing services or items needed to have IVIG infusion in the home.
We’ll see what happens when the committee reconvenes in September.
Meanwhile in the Senate Finance Committee, action is finally expected to take place in September on health care reform. IDF is approaching Senator Kerry, our sponsor of S 701, the Medicare Patient IVIG Access Act, to introduce an amendment based upon his S 701 bill when the Senate Finance committee meets.
While neither of these amendments are perfect, they will keep the PIDD community in the game and provide a foundation to build on.
During this August recess, please pick up the phone and call your Senators and Congressman. If any of them are having a town meeting, attend and tell your story and urge them to actively support our legislation and put its provisions in the health care reform bill. Keep pestering them in a thoughtful and polite manner!!
And, post your experiences with contacting your Member of Congress and Senators on this site. We want to hear from you!