There has been a whirlwind of activity and attention through legislative and grassroots activities this year on behalf of organ donation and transplantation. With grassroots efforts, the following activities are underway:
Medicare Drug Coverage
Patient groups continue to work on behalf of the Part D six Protected Classes statutes. These statutes guarantee continued access to the prescription drugs needed by transplant recipients and the other five patient groups.
Medicare Coverage of DNA Tests for Organ Rejection
Another recent effort has started to restore access to non-invasive (no biopsy) monitoring of organ rejection. Earlier this year, CMS (Centers for Medicare and Medicaid) reversed course on the use of tests such as Allosure as part of regular blood test work. These non-invasive blood tests can now only be used to confirm the rejection is happening. A team called Honor The Gift2 has been meeting with members of Congress urging them to sign on to a letter asking CMS why it reversed course on its previous consent to use the blood test as a regular part of organ monitoring. This letter was co-sponsored by Members Eshoo and Burgess, long-time champions of the transplantation community. Recently TRIO was a very big part of a group that traveled to Washington and met with Representatives and Senators to educate them on the importance of cell-free DNA non-invasive blood testing. Lorrinda Gray-Davis, Ike Copperman, Cory Reynolds, and Emanuel Lewis from TRIO were in the group. We will continue to inform you of the activities on behalf of cell-free DNA testing.
Legislation To Support Living Donors
Because deceased donor organs are in short supply, there have been multiple efforts to increase and support living donation.
In New York State, lobbying efforts continue with the Department of Health (DOH) to implement the legislation signed by Governor Hochul in December, 2022. This legislation provides protections for living donors. The DOH has indicated that implementation of the legislation may not happen until no sooner than 2024. The group is pressing on DOH to pull out the stops and get it done in 2023. If you know of any state legislative activities, please inform us for a future e-newsletter issue.
On the federal level, there are several bills introduced in Congress on behalf of transplantation. A few of these involve modifying the existing NOTA (National Organ Transplantation Act) legislation of 1984.
The HOLD Act (Honor Our Living Donors) – This proposal is being presented by WaitListZero. Elaine Perlman, Executive Director, tells us that its intent is to make sure that living donors are compensated more appropriately than in current guidelines.
The Living Donor Protection Act (HR 2923/S 1384) – These bills have bipartisan support led by Representative Jerry Nadler. 120 members, Democrat and Republican, have signed on to turn these bills into law. The bills would prevent insurance companies from denying coverage to living donors for a variety of claims.
The Organ Donation Clarification Act (HR 4343) – This bill is co-sponsored by members Matsui and Wilson. It clarifies language in the NOTA Act to make sure living donors are eligible for payments for expenses incurred for donation, including long-term health insurance coverage for 10 years after a transplant. It also clarifies that UNOS can undertake research projects on behalf of transplantation that include reimbursements to donors.
Securing the US Organ Procurement and Transplantation Network Act (HR 2544/S 1668) – This bill has been passed by the Congress and sent to the President awaiting his signature. It modifies NOTA to allow the Secretary of HHS (Health and Human Services) to award pieces of managing the OPTN network to more than one entity, including for-profit organizations. OPTN has been managed only by UNOS since 1987.
Finally, an organization called ModifyNota.org is supporting an effort to modify NOTA to give substantial tax credits to living donors as a form of payment.
Please don’t forget that your individual voice speaks loudly on behalf of donation. The public comments window for UNOS Committee proposals is now open and available to you. The comment period ends on September 19th. Read about the activities and add your comments. You can link to this window through the following:
If you have any questions or comments about this information, please contact Ike Copperman at irajay2004@gmail.com.