@transplantpolicy.org
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.
Although EBV can cause complications after a transplant, less than 14% of EBV-negative children received kidneys from EBV-negative donors, who mostly went to low-risk EBV-positive adults.
ja.ma/47RzWjG
ja.ma/47RzWjG
November 1, 2025 at 4:04 PM
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.
Reposted
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
For caregivers: SGLT2 Inhibitors for Transplant Recipient Kids
bit.ly
September 30, 2025 at 10:13 PM
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
Reposted
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...
kffhealthnews.org/news/article...
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...
kffhealthnews.org
October 5, 2025 at 1:33 PM
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...
kffhealthnews.org/news/article...
Reposted
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...
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.
www.kidney.org
October 6, 2025 at 1:31 PM
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...
Reposted
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.
And if you use this approach towards childhood vaccines, you will exacerbate the Trump/Kennety outbreaks.
October 6, 2025 at 3:36 PM
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.
And if you use this approach towards childhood vaccines, you will exacerbate the Trump/Kennety outbreaks.
Reposted
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.
In the midst of a measles epidemic that killed 3 people, RFK Jr. reminds us that vaccines don't save lives.
RFK Jr.: “Vaccines Don’t Save Lives”
In a recent post on X, RFK Jr. said that vaccines are overrated.
open.substack.com
October 7, 2025 at 11:04 AM
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.
In the midst of a measles epidemic that killed 3 people, RFK Jr. reminds us that vaccines don't save lives.
Reposted
RFK Jr on Tylenol and autism: "It is not proof. We're doing the studies to make the proof."
October 9, 2025 at 4:57 PM
RFK Jr on Tylenol and autism: "It is not proof. We're doing the studies to make the proof."
Reposted
Read this op-ed in the @bostonglobe.com by LDI Fellow @zekeemanuel.bsky.social. ⤵️
RFK is turning the CDC into an ideological rubber stamp of the Trump admin. Congress must use their oversight power to restore qualified leadership and adequate funding to the CDC. Our children's health and our scientific credibility depend on it.
www.bostonglobe.com/2025/09/04/o...
www.bostonglobe.com/2025/09/04/o...
How to respond to Kennedy’s purge at the CDC - The Boston Globe
Major responsibility rests on Republican Senator Bill Cassidy of Louisiana, who cast the pivotal vote for Kennedy’s confirmation as HHS secretary.
www.bostonglobe.com
September 10, 2025 at 10:47 PM
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.
Although EBV can cause complications after a transplant, less than 14% of EBV-negative children received kidneys from EBV-negative donors, who mostly went to low-risk EBV-positive adults.
ja.ma/4nyUNgL
ja.ma/4nyUNgL
September 21, 2025 at 7:19 PM
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.
Reposted
After today, I want to start a new movement - Make Transplant Boring Again.
September 18, 2025 at 7:30 PM
After today, I want to start a new movement - Make Transplant Boring Again.
Reposted
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...
- 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...
Next ACIP Meeting: Anticipated Votes
Read draft vote language to be considered during the next ACIP meeting.
www.cdc.gov
September 18, 2025 at 1:35 PM
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...
- 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...
Reposted
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...
What State-by-State Rules Mean for Your COVID Shot
With federal vaccine guidance under fire, states are forging their own immunization paths
www.scientificamerican.com
September 17, 2025 at 9:05 PM
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...
Reposted
CDC ACIP meetings can be streamed here:
Today's: www.youtube.com/live/-6uBNXs...
and
Tomorrow's: www.youtube.com/live/_9ChY9S...
Today's: www.youtube.com/live/-6uBNXs...
and
Tomorrow's: www.youtube.com/live/_9ChY9S...
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.
www.youtube.com
September 18, 2025 at 12:14 PM
CDC ACIP meetings can be streamed here:
Today's: www.youtube.com/live/-6uBNXs...
and
Tomorrow's: www.youtube.com/live/_9ChY9S...
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
publichealth.jhu.edu/ivac/resourc...
@pidsociety.bsky.social @idsainfo.bsky.social @ast-idcop.bsky.social
September 18, 2025 at 12:15 PM
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
publichealth.jhu.edu/ivac/resourc...
@pidsociety.bsky.social @idsainfo.bsky.social @ast-idcop.bsky.social
Reposted
Great work by @jamesalcorn.bsky.social and team.
New in Transplantation Direct: Modernizing the Design Process for US Organ Allocation Policy — moving toward a continuous distribution framework for #kidneys #TXPforAll #OpenAccess #MedTwitter @MIT tinyurl.com/439e3phe
September 5, 2025 at 12:04 PM
Great work by @jamesalcorn.bsky.social and team.
Reposted
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?
Check out this month's AJT Report, "Managing the logistics of the new allocation policies." www.amjtransplant.org/article/S160...
September 9, 2025 at 4:33 PM
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?
Reposted
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.
NEW: Federal funding for organizations that help students with hearing and vision loss across eight states will stop at the end of the month, according to letters sent by a top Education Dept. official and obtained by ProPublica.
By @jodiscohen.bsky.social @jsmithrichards.bsky.social
By @jodiscohen.bsky.social @jsmithrichards.bsky.social
Programs for Students With Hearing and Vision Loss Harmed by Trump’s Anti-Diversity Push
Citing concerns about DEI, the U.S. Department of Education has halted funding for programs that support students with combined hearing and vision loss in eight states. “How low can you go?” one advoc...
www.propublica.org
September 15, 2025 at 3:38 PM
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.
Reposted
This article makes important points, but most needs assessments ignore the most vulnerable: minorities, underserved, and pediatrics.
Viewpoint: Addressing the gap between therapeutic investments and unmet medical needs in the US requires strategic alignment through improved data, partnerships, funding, and policies.
ja.ma/4nyWlHO
ja.ma/4nyWlHO
September 15, 2025 at 4:19 PM
This article makes important points, but most needs assessments ignore the most vulnerable: minorities, underserved, and pediatrics.
Reposted
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.
Although EBV can cause complications after a transplant, less than 14% of EBV-negative children received kidneys from EBV-negative donors, who mostly went to low-risk EBV-positive adults.
ja.ma/4nyUNgL
ja.ma/4nyUNgL
September 17, 2025 at 5:06 PM
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.
Livestream tomorrow:
"HHS Makes Historic Improvements to Organ Programs"
Link: www.hhs.gov/live/live-1/...
"HHS Makes Historic Improvements to Organ Programs"
Link: www.hhs.gov/live/live-1/...
www.hhs.gov
September 17, 2025 at 7:41 PM
Livestream tomorrow:
"HHS Makes Historic Improvements to Organ Programs"
Link: www.hhs.gov/live/live-1/...
"HHS Makes Historic Improvements to Organ Programs"
Link: www.hhs.gov/live/live-1/...
Reposted
If you know anyone affected by the cuts to HHS or are yourself affected, you may be interested in this survey. hhs-impacts.org
HHS Impacts
Share your story on how cuts to the U.S. Department of Health and Human Services impacts everyone's health and wellbeing.
hhs-impacts.org
April 29, 2025 at 5:10 PM
If you know anyone affected by the cuts to HHS or are yourself affected, you may be interested in this survey. hhs-impacts.org
Reposted
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
April 8, 2025 at 3:23 AM
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!
Reposted
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
April 7, 2025 at 8:00 PM
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
Reposted
Per /u/lake_huron on Reddit, HOPE Act (HIV) and xenotransplantation NIH grants terminated. #OrganTransplant taggs.hhs.gov/Content/Data...
taggs.hhs.gov
March 30, 2025 at 12:12 AM
Per /u/lake_huron on Reddit, HOPE Act (HIV) and xenotransplantation NIH grants terminated. #OrganTransplant taggs.hhs.gov/Content/Data...