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IVIG Access Update

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!

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Comments

Am pleased that both my KS Senators (Brownback and Roberts) and my Representative, Dennis Moore, have responded positively to requests and do support the IVIG bills. Also, in a recent town hall meeting, Rep Todd Tiahrt mentioned my concerns about inadequate Medicare coverage which I had brought to his attention during Capitol Hill Advocacy Day. Squeeky-wheel constituants do make a diference!

I wish I had the same response that Ginnis has successfully had. In Florida one of our Senators has resigned and the other, Senator Nelson, is covered with Teflon and seems to continue to avoid responding to the issues at hand. I will not go away. We have had 4 Town Hall meetings in the last ten days in this area, but apparently down here they have a different definition of Town Hall meetings. None have been open to the public and yes people have filled the seats of these meetings, but I believe by invitation only. I do not go away that easily and I am still working on them. I believe that Larry has ask us to be polite and I am abiding by that, but I also believe that persistence is also needed. I may not have many talents, but I can be persistent. Thank you for the blog so we can see what other states are accomplishing. It is a learning opportunity and it gives more fuel for the fire. I can say, what about what they are doing in (fill in the blanks of the states that are responding). I will be giving my latest reports to Larry and Wende and what is happening in Florida and I am open to any other ideas. Let's get it done. Anyone who is reading this, please know the best advocate is a patient advocate and that we all have a voice. Even though the staff at IDF is fighting hard for us, we still have to do our part. Please join us, because everyone has a voice. Jenny Gardner, Florida (I bet you already had my location figured out.)

Thank you Ginnie and Jenny! The grassroots movement is the most powerful tool we have!

My experience is somewhere between Ginnie and Jenny. I participated in a conference call town hall meeting. I was appalled at how uninformed the general public is regarding the state of healthcare in this country and the issues. I did get to speak with an aid and pose my question regarding the IVIG Access Act, but Senator Carper didn't address it. There may be another virtual town hsll meeting. If I get a robocall inviting me, I'll participate and keep plugging away until they answer...

I am so excited!!! One of our local senators co-sponsored our bill. I now got the Plaquemines Parish President, Mr. Nunngessor, to send out personal letters to all our senators and representatives throughout Louisiana. I am crossing my fingers that this extra push helps us out!

Am pleased that both my KS Senators (Brownback and Roberts) and my Representative, Dennis Moore, have responded positively to requests and do support the IVIG bills. Also, in a recent town hall meeting, Rep Todd Tiahrt mentioned my concerns about inadequate Medicare coverage which I had brought to his attention during Capitol Hill Advocacy Day. Squeeky-wheel constituants do make a diference!

Steve, that is great! Kansas legislators certainly are on top of this issue, Rep. Jerry Moran has signed on to the bill since Advocacy Day, as well. :)