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Federal Policy: Where Are We?

As we head into the Fall political season, it is a good time to review and update where things are with respect to IDF’s public policy efforts at the Federal level.

IDF and its volunteers have made great strides in our drive to pass the Medicare IVIG Access Act. Through the efforts of IDF volunteers and staff, there are now 43 bipartisan co-sponsors to Congressman Brady’s (R-TX) House bill, HR 1845, and 9 bipartisan co-sponsors to Senator Kerry’s  (D-MA) Senate companion bill, S. 960!  This is a phenomenal increase in four short months from the 14 original House and two original Senate co-sponsors who had signed on to the bills at introduction.

Volunteer letters and phone calls coupled with meetings by IDF staff have been a winning strategy to gain recognition and awareness of our legislation on Capitol Hill.  In addition to the continuing addition of co-sponsors, the Medicare IVIG Access bills are now on the “radar screen” of the legislative leadership in both the House and the Senate.  In the House, Representative Brady has made HR 1845 one of his top legislative agenda item and is working hard to gain support from the Speaker and other members of the House’s Republican leadership.  On the other side of the aisle, Representative Matsui is working hard to keep the bill visible and gain other co-sponsors.  On the Senate side, Senator Kerry continues to keep the issue visible among his colleagues and Senate leadership.

Generally, legislation is bundled together and passes as part of a larger package.  Therefore,  our advocacy efforts include identifying appropriate legislative vehicles to add the Medicare IVIG Access Act.  There are several potential avenues.  One vehicle could be whatever legislation that may come out of the Joint Select Committee on Deficit Reduction, or what you may have heard called the ”Debt Super Committee,” that was created as a part of the deal to increase the debt ceiling and address the Nation's deficit. It is expected the Super committee will be dealing with Medicare issues as they work to reduce the deficit.  Our legislation is attractive because it costs little and provides a “pay for” that could save Medicare $200 million+.  Senator Kerry and Representative Chris Van Hollen (D-MD) are both sponsors of our bills and are also members of the select 12 legislators on the Debt Super committee.  It is also quite possible that there may be two other Medicare legislative vehicles between now and Christmas that may be the perfect fit for our legislation.

IDF has also been very concerned the health care reform law (Affordable Care Act – ACA) passed in 2010 be implemented in a way that will help and not hinder patients with rare and chronic diseases like primary immunodeficiency diseases.  IDF and fellow patient organizations who use plasma products (Alpha-1, Antitrypsin Deficiency (Alpha-1), Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) ; Hemophilia, and Immune Thrombocytopenia (ITP))  are working together as part of the American Plasma Users Coalition (A-PLUS) to fight to make sure patients will have access to the care they need, when they need it, and in the setting most appropriate for the individual patient.   IDF and A-PLUS have been meeting and communicating with policy decision makers on issues such as the creation and development of State Health Exchanges, what constitutes the “essential benefits” that all insurance policies should cover and many other provisions that must be implemented before the health law goes into effect,  January 1, 2014.

IDF and A-PLUS have also been very active in monitoring legislation and regulations, as well as actively raising questions regarding the various debt related discussions that dominated the summer and will continue to dominate the next couple of months.  Several ideas that are being discussed involve cuts to Medicare benefits that are of particular concern for our patients.    These ideas include reducing reimbursement for IG therapy, moving coverage of IG therapy in the home away from Part B of Medicare to Part D of Medicare and curtailing first dollar coverage of MediGap policies.  Medicare beneficiaries are currently able to offset their 20% co-insurance requirement in Part B by purchasing an insurance policy that will cover the coinsurance requirement. All of these actions would undoubtedly hurt Medicare patients with primary immunodeficiency diseases.

We have recent history and experience to know that reducing reimbursement for IVIG will all but force our patients to go to only hospitals for IVIG as these will be the only facilities that will be able to afford to treat patients with primary immunodeficiencies.  Moving immunoglobulin replacement therapy from Part B to Part D will most probably significantly increase patient out-of-pocket costs due to co-insurance percentage increases, restrictive formularies and the “doughnut hole” co-pays.  Curtailing first dollar coverage of Part B services by eliminating or severely curtailing MediGap supplemental insurance could also significantly increase out-of-pocket costs to some patients.

IDF, using its own resources, working with and leveraging the resources of other plasma user patient groups and with the active support of IDF volunteers, will continue to smash the obstacles and roadblocks to access to patient care on behalf of patients with primary immunodeficiency diseases.  Like with our peer support, awareness and fundraising, volunteer support for IDF’s advocacy efforts is critical to ensuring the success of our initiatives.   Thank you to all who have already shared your time and self on behalf of the community.  Please complete the Action Alert in support of the Medicare IVIG Access Act and contact IDF if you are interested in doing more to support our public policy efforts. Every voice is critical to our efforts!!


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