2022 Was a Banner Year for UNOS
The United Network for Organ Sharing (UNOS) ended 2022 with major accomplishments for organ, eye, and tissue transplants. This comes along with enacting significant efforts in organ distribution, bringing an organ from a donor hospital to the neediest waiting list candidate, to create more equity and efficiency in the transplant network.
In September, 2022, UNOS recorded the 1 millionth transplant since record-keeping was started in the late 1980s. This event was then augmented with transplant records for the full year of 2022, resulting in almost 43,000 transplants from more than 21,000 donors, including 15,000 deceased donors and more than 6,400 living donors. There have been year over year increases in deceased donors every year since 2008.
UNOS has been actively implementing new organ distribution programs using the concept of “continuous distribution.” Continuous distribution considers all patient factors together to determine the order of an organ offer, and no single factor will decide an organ match. The goal is to increase fairness. Organs that are now part of the continuous distribution system include lung, kidney and pancreas, and liver and intestine. Heart continuous distribution will start in 2023.
Also, efforts are being targeted to improving organ transportation, which is the physical delivery of organs from donor hospitals to transplant centers.
For more information about any of these topics, please contact the Public Policy Committee, irajay2004@gmail.com.
New Criteria for Lung Transplantation take effect March, 2023
UNOS (United Network for Organ Sharing) hosted a webinar on January 19, 2023 to review the plans for the rollout of lung donation continuous distribution for all lung transplant patients.
As a logical next step after removing geographic considerations to the distribution of organs, continuous distribution promotes more equity and access to transplantation for the neediest person on each organ waiting list. In the past, geographic considerations for distribution often meant that a less sick person in a particular region would be offered an organ over someone farther away from the donor hospital who was outside of the fixed geographic distribution area.
Now, there are 9 weighted factors applied to every person on the lung waiting list. These factors create a Lung Allocation Score (LAS). When a lung becomes available, the offer is made to the person with the highest LAS score regardless of geographic location. Geographic location is one of the 9 factors.
UNOS committees are already working on developing continuous distribution allocation factors and weightings for heart, liver, and kidney/pancreas.
For more information about continuous distribution, please check out the following video:
PASSAGE OF LIVING DONOR SUPPORT ACT IN NEW YORK STATE
December 29, 2022 was a banner day on behalf of organ donation and transplantation in New York State. Governor Kathy Hochul signed into law The New York State Living Donor Support Act (S.1594/A.146A). This law expands the financial provisions and safety features on behalf of individuals who come forward to be living donors.
Elaine Perlman, Executive Director of WaitListZero, provided the following additional information:
“Waitlist Zero's Executive Director Josh Morrison wrote the legislation. State Senator Rivera from The Bronx and Assembly Member Gottfried from Manhattan sponsored the bill.
This spring, a team from the NKDO, NKF, DOVE, LiveOn New York, and Waitlist Zero lobbied for the bill's passage in Albany. Soon after, the LDSA was unanimously passed by both houses. This new law creates the opportunity for New York's living donors to avoid going into debt to donate. Living donors will be reimbursed for their lost wages and out-of-pocket expenses. New York will be the first state in the country to offer this opportunity for donation to be cost neutral for donors.
Currently the Federal Government only reimburses when both the recipient and donor make less than 350% of the poverty line (around $47,000). The LDSA will reimburse the lost wages of donors who make up to $125,000 as well as the costs of donation (travel, childcare, etc). In addition, the LDSA will ensure that all potential recipients will be educated about transplantation.”
For more information about this law, please check out the press release issued by WaitListZero: https://www.willettpublicaffairs.com/post/governor-hochul-signs-new-york-state-living-donor-support-act-into-law
The press release from Governor Hochul’s office can be found at the following link: https://www.governor.ny.gov/news/governor-hochul-signs-new-york-state-living-donor-support-act-law
Part D Protected Classes
TRIO continues to actively participate in the Partnership for Part D Access, which is focused on protecting access to six classes of drugs used to manage complex illnesses, including organ transplantation, that are currently covered under Medicare Part D. This effort is managed by Venn Strategies, a Washington, DC-based government relations public affairs firm.
A resolution to support continued coverage of these drugs was introduced in the last Congress but no vote was taken. The current Congress has been focused on the debt limit and has taken no action at this point. The resolution will be reintroduced in the current Congress by Rep. Grace Napolitano of California. When the new resolution is introduced, there will be social media and organizational outreach efforts to contact members of Congress to support the resolution. The Public Policy committee will provide information about the resolution and key points as this process develops.
UNOS Regional Meetings
Regional meetings are held twice each year during the winter and summer public comment periods. Regional meetings are an opportunity to influence policy proposals, prepare for upcoming changes, and hear perspectives from the transplant community about improvements to organ allocation. There are currently at least twelve proposals open for public comment. Here is a link to those proposals: https://optn.transplant.hrsa.gov/policies-bylaws/public-comment/
The schedule for the Winter Regional meetings for 2023 follows:
Region 1: March 6, Waltham, MA
Region 2: Jan. 26, Philadelphia, PA
Region 3: Feb. 13, Atlanta, GA
Region 4: Feb. 2, Dallas, TX
Region 5: Feb. 9, Las Vegas, NV
Region 6: March 10, Portland, OR
Region 7: Feb. 7, Chicago, IL
Region 8: Feb. 28, Kansas City, MO
Region 9: Feb 14, NYC, NY
Region 10: Feb. 3, Dayton, OH
Region 11: March 1, Charlotte, NC
Here is a link to the schedule: https://optn.transplant.hrsa.gov/about/regions/regional-meetings/
Both Chapter leadership and individual members are encouraged to register for their Region’s meetings. UNOS welcomes comments from the recipient community and the Public Policy committee has observed that our comments are definitely heard and considered. Committee members will be attending their Regional meetings and will report on activities.