Apr 9, 2025, 11:26 AM by Ginny Bumgardner, ASTS President

 

Dear ASTS Member,

Thank you to those of you who registered and attended our webinar on April 3 to discuss updates regarding OPTN Modernization. As your President, I have committed to keeping you informed on this important initiative and as such, ASTS learned yesterday during the ASTS Patient Voice Webinar that 8 Patient & Donor Affairs (PDA) representatives serving the OPTN have resigned from the OPTN Board of Directors effective April 15, 2025. These individuals did not make this decision lightly, and this “VOTE” OF NO CONFIDENCE raised in the PDA letter is alarming. The following concerns are raised in their letter:

1. EROSION OF TRANSPLANT PATIENT AND COMMUNITY VOICES that DISMANTLES the long-standing PUBLIC-PRIVATE PARTNERSHIP in favor of a government-controlled system. Patient, donor, and family voices are not heard. There is continued lack of productive engagement between HRSA with patients, donors and other volunteers serving on the OPTN Board. Numerous requests, concerns and questions have not been answered.
2. MISREPRESENTATION of BoD transition plans. The letter indicates that HRSA has misrepresented its communication with the Board regarding the existence of an agreed transition plan to facilitate training of new Board members.
3. IMPEDING OPTN BoD direct communication with the transplant community, the media and the public and routing all inquiries to OPTN through a federal Media Desk without consultation with or approval of the OPTN Board, Executive Committee or other OPTN volunteers.
4. LACK OF BUDGET TRANSPARENCY IMPEDES PROGRESS. OPTN Board members have no insight into budget and financial resources limiting implementation of high priority proposals. With the recent passage of the Continuing Resolution, OPTN patient registration fees that were previously under the direction of the OPTN BoD to implement initiatives that improve the national transplant system, will now be collected and disbursed by HRSA.
5. LACK OF ACCOUNTABILITY. With media attention on topics like allocation out of sequence (AOOS), the patients perceive a shifting of blame, for critical issues like AOOS, to volunteers of the OPTN. Yet, the work of OPTN volunteers to address issues such as AOOS and others, was started several years ago and then actively stopped by the government.

Our patients should remain at the center of every decision associated with OPTN Modernization and the ASTS remains deeply grateful for the time and dedication that this group of volunteer patients, donors and families brought to the Board of Directors. Now more than ever, we ask HRSA to PAUSE and REASSESS the direction of OPTN Modernization by engaging with the transplant community to develop the best path forward.

I urge you to join our call to action so that we can collectively work together to build the best future for our patients and families.

Ask Your Representatives to Pause and Reassess OPTN Modernization

Act Now!