Community
How you can help shape the future of organ donation and transplant
A message from Dianne LaPointe Rudow, President, UNOS Board of Directors
In brief:
- President Biden recently signed a new law to improve the U.S. Organ Procurement and Transplantation Network (OPTN).
- The Health Resources and Services Administration (HRSA) will implement these changes through a Modernization Initiative to best serve patients.
- UNOS has been working with HRSA to help enact many of these important reforms as part of its Action Agenda.
- Patients—your voice matters:
- Provide vital feedback to HRSA about the Modernization Initiative on this dedicated webpage.
- Continue participating in public comment periods for proposed OPTN policy changes.
What’s going on
I’m a nurse practitioner by training, and I’ve spent countless hours with patients—both those waiting for a transplant and those who’ve just received one. I’ve seen firsthand the highs and lows, both physical and mental, that patients, living donors, loved ones, and family members of generous deceased donors go through, and one thing remains clear: Patients like you are at the center of the U.S. organ donation and transplant system, and it is up to us in the transplant community to engage with you and learn more from your experiences.
Help make the system work better
Hear from UNOS Board President Dianne LaPointe Rudow on how to share your voice
Change is happening
This fall, President Biden signed the Securing the U.S. Organ Procurement and Transplantation Network Act into law, which aims to improve the Organ Procurement and Transplantation Network (OPTN). The goal of the legislation is to ensure that the system works better for the more than 100,000 people waiting for lifesaving organ transplants. The Health Resources and Services Administration (HRSA), the federal agency overseeing the OPTN, is working to implement its initiative to modernize the system, focused on enhancing performance, accountability and transparency, while also increasing competition for the OPTN contracts. Right now, one federal contractor—UNOS—serves as the OPTN and continues to work in collaboration with HRSA to enact reforms.
Patient impact
I know from the time I spend with my patients that the last thing they want is any more uncertainty. However, I believe that these critical changes can lead to a system that is easier for patients to understand and navigate, and will ultimately help even more patients in need.
We are counting on your invaluable perspective as a patient, donor, donor family member or a caregiver. Your feedback is needed because it is vital that we get these improvements right. With that in mind, I urge you to take advantage of this opportunity to help make the system work better for people like you. The success of HRSA’s modernization efforts depends on people with first-hand experience sharing their ideas, concerns and recommendations.
A commitment to collaboration
UNOS has and continues to support patients and all efforts to improve our nation’s organ donation and transplant system. As long as there is a waitlist, our work is never done.
UNOS will continue working with HRSA, the U.S. Department of Health and Human Services, Congress and the wider donation and transplant community to implement meaningful reforms that enhance how we serve America’s organ donors, transplant recipients and their families. Our ideas for system improvement are captured in our Action Agenda, which provides reforms we think are necessary to strengthen the U.S. donation and transplant system, many of which align with HRSA’s Modernization Initiative.
Your feedback is needed because it is vital that we get these improvements right.
Your voice matters
Given the incredible complexities of the organ donation and transplant system—and the lives that depend on it—it’s critical that any changes are based on the thoughtful input of and in direct participation with you.
You can provide direct feedback on the Modernization Initiative by filling out this form on HRSA’s website.
I also encourage you to continue playing an active role in ongoing OPTN policy development improvements by participating in public comment periods and providing feedback on proposed policy changes.
Strengthening the system
UNOS remains committed to providing stability and continuity during this time of change. We also want to make sure that not a single patient’s health journey is impeded during this process. As with all other facets of the organ donation and transplantation system, UNOS exists for the benefit of patients, donors and their families.
With so much at stake, and with the promise of important reforms that will improve how we serve patients and families like you, it is critical that your voices are heard as HRSA proceeds with the Modernization Initiative and develops the next generation of OPTN contracts.
LaPointe Rudow, Director of the Center for Living Donation at Mount Sinai Medical Center in New York, is president of the UNOS and OPTN boards of directors.
Action Agenda
Actions to strengthen the U.S. organ donation and transplant system