Information for Grassroots Advocates
We need your help!

The primary immunodeficiency community is experiencing delays in and denial of treatment due to insufficient Medicare reimbursement. An April 2007 report from the Office of the Inspector General showed Medicare reimbursement for IVIG is lower than the cost many providers pay for the product. As a result, many physicians and hospital outpatient units cannot afford to administer IVIG treatment to Medicare patients. This is a serious problem for the entire community as an increasing number of private pay insurers are starting to follow Medicare’s lead to determine reimbursement rates for IVIG.

But there is something you can do to improve this situation. In June 2007 legislation known as the “Medicare IVIG Access Act” was introduced in Congress. This legislation offers a solution to the current IVIG access crisis by setting up a process for evaluating reimbursement policy for IVIG to determine when adjustments to payment are appropriate. It also changes current policy regarding Medicare coverage of home infusion to include the cost of items and services related to the administration of IVIG in the home.

Even if you are not on Medicare, this legislation affects you! Typically, private insurance follows reimbursement standards set by Medicare policy. Don’t wait until you are unable to get the treatment to take action.

Since the “Medicare IVIG Access Act” was introduced in Congress, significant progress has been made. This is in large part due to the grassroots efforts of patients and family members like you.

• 26 Members of Congress are co-sponsoring the “Medicare IVIG Access Act.”
• Rep. Pete Stark (CA) recently shared a personal experience with IVIG during a Ways and Means Committee discussion on Medicare, offering to work with the bill’s supporters to include something in a final Medicare package this year. He is the Chairman of the Health Subcommittee.
• Rep. Jim McCrery (LA), ranking Republican Member on the Committee, specifically reiterated the significance of the IVIG access problem, stating that everyone keeps saying there’s a problem, but nothing gets done to fix it. He urged the Committee to continue working on a solution together.
• Mr. Rangel (NY), Chairman of the Committee, restated the Committee’s commitment to work on the issue and his recognition of the urgency for the patients. 

 We need your help! Contact your Representative and Senators to request their support for an IVIG fix in any Medicare legislation passed this year. It is crucial that they hear from you, their constituents, that this legislation helps PIDD patients.

For more information on how to contact Congress, visit www.immunedeficiency.org and click on Action Alert.

Whether you call, write or make an appointment in the local office, clearly identify your request –

• Representative – ask them to cosponsor the Medicare IVIG Access Act and urge that a Medicare IVIG fix is included in any Medicare bill passed by Congress this year. 
• Senators – ask them to go to leaders of the Senate Finance Committee and ask that the IVIG problem be included in the Senate’s Medicare package of amendments and in any conference agreement that emerges from discussions with the House. 

Please know that you will speak or meet with a member of the staff.  Don’t be concerned if you do not actually meet with your Representative or Senators.  The staff is responsible for researching an issue or introduced bill and for preparing a memo for the Member of Congress explaining the issue, the connection to the district/state, whether there is support or opposition to the bill, and a recommendation of whether or not to support the bill. The staff is your best advocate to elevate interest in the issue.