After this article went to press, I reached out to several pediatric nephrologists (including one of the authors), and opinions were quite mixed on where the community should go from here, specifically in terms of policy implications.

For caregivers: SGLT2 Inhibitors for Transplant Recipient Kids

Have questions about SGLT2 inhibitors for transplant recipient kids? Join our webinar on October 13, 2025! Get insights from experts. Register: bit.ly/TFSGLT2 #Webinar #TransplantEducation

Changes at NIH Give Political Appointees Greater Power To Fund or Block Research - KFF Health News The National Institutes of Health’s long-held standard of peer review for grantmaking has been subverted by President Donald Trump and NIH Director Jay Bhattacharya, who gave unprecedented power to po...

IMO this hasn't gotten enough attention: a recent memo at NIH announces that peer review will be devalued in determining which grants get funded, granting more power to political appointees to make decisions based on the admin's whims over scientific merit

kffhealthnews.org/news/article...

Act Now: Kidney Patients Could Lose Telehealth Coverage Telehealth is crucial for kidney patients. Learn how the bipartisan CONNECT for Health Act would make expanded telehealth permanent and how you can contact your Senators to protect access.

The bipartisan CONNECT for Health Act would make expanded telehealth flexibilities permanent. Without it, patients risk losing access to care they rely on. www.kidney.org/news-stories...

Tweet from Jim O’Neill claiming ACIP covid recommendations bring back informed consent.

Reminder: informed consent is always required for a vaccine. Shared clinical decision making just creates confusion and decreases uptake, without improving informed consent.
And if you use this approach towards childhood vaccines, you will exacerbate the Trump/Kennety outbreaks.

RFK Jr.: “Vaccines Don’t Save Lives” In a recent post on X, RFK Jr. said that vaccines are overrated.

open.substack.com/pub/pauloffi...
In the midst of a measles epidemic that killed 3 people, RFK Jr. reminds us that vaccines don't save lives.

RFK Jr on Tylenol and autism: "It is not proof. We're doing the studies to make the proof."

Read this op-ed in the @bostonglobe.com by LDI Fellow @zekeemanuel.bsky.social. ⤵️

Per at least one of the authors, the hope is that these findings can work their way into kidney allocation policy, when ever HHS/HRSA realizes that Continuous Distribution is important to patients.

After today, I want to start a new movement - Make Transplant Boring Again.

Concrete announcements:

1. Decertification of UMiami OPO
2. Expansion of living donor supports
3. Expansion of KidneyX xenotransplant accelerator

Here's what ACIP is planning to vote on today and tomorrow:

- No MMRV vaccine before age 4 (only MMR and V separately)

- No hepatitis B vaccine at birth unless the birthing parent is hep B+ (what about others?). After one month of age, "shared decision making" w/ doctor
www.cdc.gov/acip/meeting...

What State-by-State Rules Mean for Your COVID Shot With federal vaccine guidance under fire, states are forging their own immunization paths

Confused by patchwork COVID vaccine guidelines across states? @sciam.bsky.social has a map with the latest info from the National Alliance of State Pharmacy Associations. We'll keep tracking updates. 📊 @unamandita.bsky.social ✏️ @jaimieseaton.bsky.social. www.scientificamerican.com/article/covi...

Advisory Committee on Immunization Practices (ACIP) - September 18, 2025 - Day 1 of 2 The Advisory Committee on Immunization Practices (ACIP) is a federal advisory committee that develops recommendations on the use of vaccines in the civilian population of the United States.

CDC ACIP meetings can be streamed here:

Today's: www.youtube.com/live/-6uBNXs...

and

Tomorrow's: www.youtube.com/live/_9ChY9S...

Johns Hopkins has created a measles outbreak tracker, similar to the one they operated during the initial stages of COVID-19. #TXID #InfectiousDiseases

publichealth.jhu.edu/ivac/resourc...

@pidsociety.bsky.social @idsainfo.bsky.social @ast-idcop.bsky.social

Great work by @jamesalcorn.bsky.social and team.

How can anyone reasonably expect to "manage the logistics of the new allocation policies" when HRSA/HHS continuously conducts policy head-fakes/diversions/distractions and overrides community will by fiat?

One of the keywords that triggered the cancellation was "transition" - ie. child-to-adult transition. "Transition" and "transplant"/"transplantation" are in 1,188 Pubmed-listed scientific papers.

This article makes important points, but most needs assessments ignore the most vulnerable: minorities, underserved, and pediatrics.

Pediatric nephrologists and/or the general transplant community, please take note of this important work that should be considered in future revisions to pediatric transplant policy. Congratulations to the team, and I love that Dr. Amaral (one of my frequent collaborators) helped to drive this.

September 18, 2025 | 10:00 AM - 11:30 AM EDT
President Trump and HHS under Secretary Kennedy are making historic moves to encourage more organ donation through reforms and policies, delivering hope to patients and families waiting for transplants.

Livestream tomorrow:

"HHS Makes Historic Improvements to Organ Programs"

Link: www.hhs.gov/live/live-1/...

HHS Impacts Share your story on how cuts to the U.S. Department of Health and Human Services impacts everyone's health and wellbeing.

If you know anyone affected by the cuts to HHS or are yourself affected, you may be interested in this survey. hhs-impacts.org

I want to applaud the patient and donor representatives on the board. As someone who has recently been there, I know this was not a decision come to lightly. Your bravery is truly inspiring!

www.instagram.com/p/DIKExuRPmy... Protesting the changes at the Organ Procurement and Transplantation Network (OPTN), the Patient and Donor Affairs representatives of the OPTN board have all submitted their resignation effective April 15th. @phtsociety @action4hf @transplantfamilies @starzlnetwork

Per /u/lake_huron on Reddit, HOPE Act (HIV) and xenotransplantation NIH grants terminated. #OrganTransplant taggs.hhs.gov/Content/Data...

American Association of Kidney Patients post on X, the everything app: WATCH! HHS Sec. RFK Jr announces a long-overdue restructure of HHS operations to consolidate agency internal functions & to better align HHS capacities to the needs of both patients & taxpayers in the fight against chronic diseases, including CKD and ESRD: https://bit.ly/4j5YyYK

This ain't it

As a longtime fan of AAKP, I can't help but feel disappointed that they’re putting a positive spin on what is an unmitigated disaster for transplant recipients.

Take Action Make a difference in the field of transplantation by donating to support our cause.

Funding cuts to the NIH threaten critical transplant research that improves patient outcomes and drives innovations like new immunosuppressants and organ regeneration. We need your help to protect NIH funding. Take action today! 👇

www.myast.org/take-action#/