Take Action → Pause the Final Rule Now!
Co-opted by special interests an organ procurement governing rule will cause unnecessary disruption for patients and donor families if not paused immediately. Take action now and share with others.
What’s the Issue?
Chaos is looming for the world’s leading organ donation and transplant system thanks to a faulty CMS regulation that will decertify up to two thirds of the nation’s nonprofit organ procurement organizations later this year. Now is the time to tell policymakers how this will impact you.
What’s Is the Final Rule?
A recently promulgated rule by CMS intends to use an unstable methodology to permanently restructure the nation's organ procurement system, with irreversible damage scheduled to strike as early as January 2027. Read more about the Final Rule →
Who to Contact?
Using the sample script on this page, we recommend mailing a printed letter to each of the following policymakers.
The Honorable Robert F. Kennedy Jr.
Secretary, Department of Health & Human Services
U.S. Department of Health & Human Services
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
The Honorable Thomas J. Engels
Administrator
Health Resources and Services Administration (HRSA)
5600 Fishers Lane
Rockville, MD 20857
The Honorable Dr. Mehmet Oz
Administrator
Centers for Medicare & Medicaid Services (CMS)
7500 Security Boulevard
Baltimore, MD 21244.
Below is more information to use in your letter and to inform you of the issue and the implications of the Final Rule.
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The Rule is based on a proposal brought forward by Organize and the Arnold Foundation.
Arnold Ventures funded and set the agenda behind the push for the rule. The founder of Organize, Greg Segal, was part of these meetings.
the Office of Management and Budget (OMB) ordered CMS to not conduct any tests that would have exposed the methodological flaws of The Final Rule.
CMS officials warned that an expedited process would not allow sufficient time to study the impact and unintended consequences of a new, untested OPO measure.
CMS officials knew they had been “outflanked” and that the process had been co-opted by outside special interests.
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CMS's performance metric, known as CALC, is unstable and does not deliver consistent results.
CMS's CALC methodology could result in certification or decertification of the wrong OPOs.
Between 20%–43% of OPOs are at risk of being decertified depending on which data source CMS uses.
41% of OPOs changed tiers in just one year, yet CMS is basing decertification decisions on results from only 2024, a single year
CMS's OPO performance methodology is biased against large OPOs.
OPOs serving more diverse populations are significantly more likely to receive lower CMS performance ratings.
Final Rule's unadjusted metrics are associated with structural bias that worsens disparities in organ donation and transplantation.
A more accurate measurement of donor potential is feasible, accurate and auditable across diverse service areas.
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Data shows that negative headlines about a failing system are leading people to lose trust in donation, both as registered donors and with next of kin in the hospital.
Every person who removes their name from a registry because of negative headlines means fewer lives saved. [If you worked as a volunteer helping to register people, say how this feels to you].
Inflammatory headlines that misrepresent the true system, some of which you contribute to, are unnecessarily eroding public trust.
Get the Word Out
After you take action, share this page to your friends, family, and neighbors urging them to pause the Final Rule, as well. Now is the time to apply pressure in numbers!
Take Action → Sample Letter
Start by copying and pasting the sample message below, then customize it with your own experience and information, explaining why this issue is important to you, and mail it to the contacts below.
Open Your Letter:
I am writing as (you can be more than one!) in defense of our nonprofit organ donation system.
A donor family member
A transplant recipient
Someone who works in organ procurement
Someone who works in organ transplantation
Someone waiting for a transplant
A registered organ, eye and tissue donor
A concerned citizen
A donation advocate
I am concerned that The Final Rule will [disrupt / destabilize / jeopardize / undermine / dismantle / harm / put in danger / weaken / tear apart] [the best organ donation system in the world / this important system that saves lives.]
In the Body Include a Call to Action (Please Use This Exact Wording):
I am asking you to Pause The Final Rule to Save Lives.
In the Body Include Your Story (Make It Your Own!):
Donor Family
As a donor family member, it [hurts my heart, feels overwhelming, upsets me] to see OPOs [disparaged, vilified, misrepresented].
My experience with my OPO has been [describe how you have engaged with your OPO].
[Our loved one’s name] was able to [save lives / give the gift of life] because of [the donation process, the care we received, their decision to be a donor].
Transplant Recipient
As a transplant recipient, it feels [heartbreaking / painful / frightening / insulting / discouraging / unfair] to see the system described as failing, when it is actually [the best in the world / increasing donation and transplant year over year / saving lives every day / supporting donors and recipients].
My transplant gave me [time with family, health, a future].
I owe that gift to a donor family and an OPO.
I also volunteer with the OPO in my area and that experience has been so important [what have you experienced as a volunteer].
Donation Professional
I work in organ procurement [you can say your role and OPO or don’t need to.]
What I see every day is [families supported, lives saved, the care and professionalism of my colleagues].
I worry about [what The Final Rule is doing to donor families, what The Final Rule is doing to the donation process, what this could mean for the work, the families we serve, the patients waiting].
In the Body Include Why to Pause the Rule (Include One or More, You Can Also Use Details on Next Page):
The Final Rule will create unnecessary disruption for the world’s leading organ donation and transplant system by decertifying up to 22 OPOs at the same time, with no plan for how services will be replaced.
There are more than 20 peer-reviewed scientific studies proving the metric used in The Final Rule is flawed.
Freedom of Information Act (FOIA) emails show that CMS was influenced by special interests when creating The Final Rule.
In the Body Include How a Pause Will Save Lives:
Waiting list patients and donor families deserve oversight that is accurate, equitable, and grounded in the best available evidence.
Please take corrective, data-supported action free from outside special interest interference.
The science is clear, and the solutions are available.
CMS should replace its flawed metric and create a more [stable / consistent / reliable] assessment of OPO performance.
Close Your Letter:
Thank you for listening to those who live this every day, and for your service to our country,
Pause the Final Rule. Save lives.
Respectfully,
[Name]
[City, state]
[Phone or email, optional]