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President Obama Signs Medicare IVIG Access Act in Law

IT’S DONE!!!  After the overwhelming support of both chambers of Congress, President Obama signed HR 1845, the Medicare IVIG Access Act, into law on Thursday January 10, 2013.  It has taken patients with primary immunodeficiency diseases and their families five years of working with Congress to successfully pass the bill.

During that time, 361 patients, family members and other supporters participated in over 500 meetings on annual IDF Advocacy Days with legislators and/or their staff to discuss the need for Medicare reimbursement for IVIG in the home setting for Primary Immunodeficient beneficiaries in addition to countless other meetings and email communications with Congressional and committee staff.  The intense focus of the primary immunodeficiency community paid off and our legislation is now law!

Within the next 12 months, the Centers for Medicare and Medicaid Services (CMS) will initiate a three year demonstration project “to evaluate the benefits of providing payment for items and services needed for the in-home administration of intravenous Immune globulin for the treatment of primary immune deficiency diseases.” During this time, Medicare patients with a primary immunodeficiency disease will be able to access home infusion of IVIG.  Our hope is that after three years, the value of the home infusion benefit will be recognized and continue.

The events of the 10 days leading up to the vote in the House of Representatives on December 19 and the unanimous consent of the Senate the evening of December 21st were dramatic and exciting.

Around December 12th or so, IDF began hearing rumors that the bill could be moving forward.  Our consultants from Hart Health Strategies and Congressman Kevin Brady (R-TX), our champion and primary sponsor of the bill verified the rumor.  By Friday the 14th, it seemed true that finally the bill was making some headway.  On Sunday, the 16th, the rumors were totally confirmed as the Majority Leader of the House published the vote schedule of the coming week.  HR 1845 was scheduled to come to the floor of the House of Representatives as a free-standing bill the afternoon of Wednesday, December 19th.

IDF, Hart Heath Strategies and supporters from industry went into action. All 60 of HR 1845’s co-sponsors were notified that the bill would be coming to the floor. IDF sent out an Action Alert to patients and their families to immediately contact their member of Congress to vote “Aye” when the bill came to the floor.

On Wednesday the 19th at 2 pm, Congressman Brady took the floor of the House to urge passage of HR 1845.  He was urgent and passionate about the bill – a true champion!  (Watch him on our website - )  Mr. Brady gave a shout –out to IDF and Marcia Boyle.  He also spoke of how his constituents, David Vetter, “the boy in the bubble” and his mother Carol Ann Demaret, inspired him to become involved with the primary immunodeficiency community and HR 1845.  It was moving and brought tears to all in the IDF office who were watching the proceedings online.

IDF’s Democratic primary sponsor and champion, Congresswoman Doris Matsui (D-CA) took the floor to speak on the bill.  She eloquently presented the need for passage of HR 1845. She argued, “that this project will mirror the results of studies of patients with commercial insurance that found increased compliance, fewer infections and overall savings for patients infused at home versus the hospital” and urged her colleagues to vote for “this critically important legislation”.

At 2:28 pm, the House conducted its 15 minute vote.  At approximately 2:30 pm the bill had gathered more than the 218 votes needed to pass. By 2:45, the vote of the House of Representatives was tallied at 401 votes in favor and 3 opposed.  HR 1845 passed the House with overwhelming support.

Even as the debate in the House was taking place, IDF and its supporters were already in the process of contacting Senators that HR 1845 was likely to pass to the Senate.

The Senate operates under different rules than the House of Representatives.  Because the deadline for this Congress was possibly only days away and at most less than two weeks, our bill could not go through the regular process and have time to be voted upon before the deadline.  Instead it was “hot-lined”!  Now that sounds like it would be “greased” and move quickly and in fact that is what it means.  However there was one big huge caveat – EVERY member of the Senate had to say “Yes”.  It had to be unanimous.  If only one Senator said “No” for whatever reason, even unrelated to our bill, the Medicare IVIG Access Act would die.

The “hotline” process entails each political party polling their members to see if there are any objections or concerns about a bill.  Working with our primary sponsors in the Senate, Senators John Kerry (D-MA) and Lamar Alexander (R-TN), IDF sought to find out if there were any questions, concerns or objections to the bill.  As it turned out, all of the patient meetings and work of IDF had paid off.  While there were several Senators who had questions, there was only one Senator who requested time to review the legislation and make sure they were okay with it moving forward.

IDF contacted patients and their families who lived in the states of all Senators with whom we were concerned may object to any legislation moving forward via unanimous consent due to the fact it requires a bill to bypass the committee process and omit opportunity for any debate or amendment.   Nearly 700 letters from patients and their families were sent to Senators via the IDF Action Alert system. Physicians were called upon to contact Senators.  Plasma centers were called upon.  Manufacturers of Immunoglobulin contacted key Senators urging support.  In fact, every single Senator was contacted more than once asking for their support of the Medicare IVIG Access Act.

By Friday morning, we learned that the Republicans, Democrats and Independents had signed off on the bill.  Everyone was ecstatic to say the least.  Now we just wanted the Senate to formally express its “unanimous consent” for the bill and send it to the President.  At 7:18 pm Friday, December 21st, we learned that the Senate had indeed passed the bill unanimously – paving its way to be sent to President Obama for signature.

And on January 10, 2013, President Obama signed HR 1845, making it the law of the land.

Three years ago, I wrote in this blog about the “Power of One”; about how one individual can make a difference.  It is very difficult to get any bill passed and signed into law – especially when it passes on its own and not as part of a larger “fiscal cliff” type of year end package.  The odds are overwhelmingly against accomplishing such a thing – especially during times like this.  But, the primary immunodeficiency community proved that the corollary to the “Power of One” is “Power of One to the 10th Power”, where people who are united can prove the odds wrong with patience, passion and persistence.

Larry LaMotte
Vice President, Public Policy

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Having been part of this process and seeing first hand all that the Staff from IDF was putting into this, I think it's time we pause and thank the real heros. Our Staff assisted all who have been involved by educating, encouraging and giving us the tools to be able to walk into a Congressman/Senator office and speak with confidence. At the time it seemed that we would never see this Bill through, but all you had to do was pick up the phone and speak to someone on staff and realize this was a real possibility. It just needed lots of hard work and all of us working together. To realize just what this means to our Patient Community is a little overwheming. The patients that were being held back because of the lack these benefits of this Bill and all it stood for, made you just want to fight harder. As we bask in this victory, I tell myself there is still work to be done. I don't ever want to forget there are patients not getting the much needed treatments they need and until we can say treatments are available to all, I believe our work in not complete. I can't wait to see what our next steps will be, but count on me to follow and do whatever needs to be done. Thank you!

Well, I just wrote a very heartfelt, detailed and passionate comment on the passage of this legislature, but it was totally lost when the "CAPTCHA Code" wasn't process!! I am too tired to try to rewrite it all. Suffice it to say that I want to thank IDF from my heart for making this legislation get pass and providing the forum/format to allow all of we, the patients, to be able to participate in the fight for change! Your support in invaluable and much more than words can express...I am eternally grateful. I want to participate in the process for the demo project and keep the lawmakers informed of the positive benefits of home care IGIV during the entire three years so they won't forget us. Please keep us posted of how we can stay involved in all of it! Thank you from my heart always.

I will try a third time to get my comment included. I have tried three times to no avail. A problem with the Captcha code, it seems. At any rate, after listening to the congressional dialogue prior to the vote, it does leave me with a questions. How does a patient enroll as one of 4,000 allowed in the three year demonstration project? I have been receiving home care IVIG for over 8 years, but now I am on Medicare and need to be included on this project for continuity of care. I have been blessed to have the same home care nurse during this entire period, being covered by a commercial insurer. It is wonderful and I am praying it gets passed as a permanent law so everyone can benefit. Please, if you can, let us know what we must do to be included in this demo project. Thank you, thank you, thank you!