Steve Joffe
@stevejoffe.bsky.social
Professor @ UPenn. Research ethics, pediatric ethics, cancer ethics, genomethics, science policy. Grateful immigrant, he/him. Speak only for myself. Reposts do not imply endorsement.
ORCID ID: 0000-0002-0667-7384
ORCID ID: 0000-0002-0667-7384
Reposted by Steve Joffe
Can venture philanthropy replicate its cystic fibrosis success for other diseases?
The CF Foundation’s early bet on Vertex generated billions for reinvestment—but LDI Fellow Matt McCoy finds those “home runs” remain rare. Read more:
https://bit.ly/4kisaEh
The CF Foundation’s early bet on Vertex generated billions for reinvestment—but LDI Fellow Matt McCoy finds those “home runs” remain rare. Read more:
https://bit.ly/4kisaEh
Venture Philanthropy Transformed Cystic Fibrosis. Can It Deliver for Other Diseases?
LDI Fellows recently analyzed the self-reported profiles of 130 patient groups in an affinity network promoting venture philanthropy.
ldi.upenn.edu
February 5, 2026 at 8:51 PM
Can venture philanthropy replicate its cystic fibrosis success for other diseases?
The CF Foundation’s early bet on Vertex generated billions for reinvestment—but LDI Fellow Matt McCoy finds those “home runs” remain rare. Read more:
https://bit.ly/4kisaEh
The CF Foundation’s early bet on Vertex generated billions for reinvestment—but LDI Fellow Matt McCoy finds those “home runs” remain rare. Read more:
https://bit.ly/4kisaEh
This is a painful but necessary read. Guts me what we are doing to our kids.
www.nytimes.com/2026/02/04/u...
www.nytimes.com/2026/02/04/u...
What the Crackdown Has Done to Minneapolis Children
www.nytimes.com
February 4, 2026 at 11:15 PM
This is a painful but necessary read. Guts me what we are doing to our kids.
www.nytimes.com/2026/02/04/u...
www.nytimes.com/2026/02/04/u...
Recently out from pedi oncology colleagues, about "cancer exceptionalism."
tl;dr: We accept therapy-induced malignancies as part of the benefit-risk calculus when treating cancer, but are unwilling to weigh them in the balance when treating nonmalignant disease. pmc.ncbi.nlm.nih.gov/articles/PMC...
tl;dr: We accept therapy-induced malignancies as part of the benefit-risk calculus when treating cancer, but are unwilling to weigh them in the balance when treating nonmalignant disease. pmc.ncbi.nlm.nih.gov/articles/PMC...
January 28, 2026 at 2:53 PM
Recently out from pedi oncology colleagues, about "cancer exceptionalism."
tl;dr: We accept therapy-induced malignancies as part of the benefit-risk calculus when treating cancer, but are unwilling to weigh them in the balance when treating nonmalignant disease. pmc.ncbi.nlm.nih.gov/articles/PMC...
tl;dr: We accept therapy-induced malignancies as part of the benefit-risk calculus when treating cancer, but are unwilling to weigh them in the balance when treating nonmalignant disease. pmc.ncbi.nlm.nih.gov/articles/PMC...
Reposted by Steve Joffe
Stop what you’re doing and read this piece, which is as powerful as you’d expect from @adamserwer.bsky.social witnessing the events of last week on the ground in Minnesota. “The secret fear of the morally depraved is that virtue is actually common, and that they’re the ones who are alone.”
Minnesota Proved MAGA Wrong
The pushback against ICE exposed a series of mistaken assumptions.
www.theatlantic.com
January 27, 2026 at 2:02 PM
Stop what you’re doing and read this piece, which is as powerful as you’d expect from @adamserwer.bsky.social witnessing the events of last week on the ground in Minnesota. “The secret fear of the morally depraved is that virtue is actually common, and that they’re the ones who are alone.”
What an astounding, maddening story.
terrific new Ben Taub piece — it cracks a long-cold case of infanticide; it's a bombshell for maternal health, child protection & opiate toxicology protocols; it exposes the Lancet’s scandalous indifference to validity of what it publishes — it should make noise
www.newyorker.com/magazine/202...
www.newyorker.com/magazine/202...
Did a Celebrated Researcher Obscure a Baby’s Poisoning?
After a newborn died of opioid poisoning, a new branch of pediatrics came into being. But the evidence doesn’t add up.
www.newyorker.com
January 26, 2026 at 10:36 PM
What an astounding, maddening story.
Reposted by Steve Joffe
Great piece. It resonates with mine on CGT "flexibilities" from last week www.statnews.com/2026/01/20/f... The FDA is kind of doing its new science policy by press release on these related fronts.
January 26, 2026 at 8:58 PM
Great piece. It resonates with mine on CGT "flexibilities" from last week www.statnews.com/2026/01/20/f... The FDA is kind of doing its new science policy by press release on these related fronts.
Excellent piece about why race is not a biological category and how medical education needs to respond. www.bmj.com/content/392/...
Race is not a biological category: challenging this misconception will help tackle racism in healthcare
Healthcare professionals must reject flawed racial generalisations, writes Jasmeen Kanwal
Institutional racism in healthcare has received increased coverage in recent years, including in The BMJ ’s ...
www.bmj.com
January 26, 2026 at 5:05 PM
Excellent piece about why race is not a biological category and how medical education needs to respond. www.bmj.com/content/392/...
Reposted by Steve Joffe
I'm perturbed by the HHS response.
Yes, of course we have to speculate when govt regulators fail to follow proper procedures for changing FDA policy.
And no, "an open door posture" isn't the same as formal opportunities for public comment/response. Keep your podcasts, give us regs+formal guidance.
Yes, of course we have to speculate when govt regulators fail to follow proper procedures for changing FDA policy.
And no, "an open door posture" isn't the same as formal opportunities for public comment/response. Keep your podcasts, give us regs+formal guidance.
January 26, 2026 at 2:33 PM
I'm perturbed by the HHS response.
Yes, of course we have to speculate when govt regulators fail to follow proper procedures for changing FDA policy.
And no, "an open door posture" isn't the same as formal opportunities for public comment/response. Keep your podcasts, give us regs+formal guidance.
Yes, of course we have to speculate when govt regulators fail to follow proper procedures for changing FDA policy.
And no, "an open door posture" isn't the same as formal opportunities for public comment/response. Keep your podcasts, give us regs+formal guidance.
Reposted by Steve Joffe
Thanks to @jasonmast.bsky.social for highlighting our analysis of FDA's new plausible mechanism pathway in @statnews.com.
Key pts:
- Plausible mech is a great idea for n of 1/few
- FDA needs to stop advancing policy via journal article
- Impt open Qs on scope
www.statnews.com/2026/01/26/f...
Key pts:
- Plausible mech is a great idea for n of 1/few
- FDA needs to stop advancing policy via journal article
- Impt open Qs on scope
www.statnews.com/2026/01/26/f...
FDA’s new ‘plausible mechanism pathway’ for personalized gene editing raises concerns
A new FDA pathway meant to enable one-time gene-editing cures could, ethicists warn, become a Pandora's box.
www.statnews.com
January 26, 2026 at 2:26 PM
Thanks to @jasonmast.bsky.social for highlighting our analysis of FDA's new plausible mechanism pathway in @statnews.com.
Key pts:
- Plausible mech is a great idea for n of 1/few
- FDA needs to stop advancing policy via journal article
- Impt open Qs on scope
www.statnews.com/2026/01/26/f...
Key pts:
- Plausible mech is a great idea for n of 1/few
- FDA needs to stop advancing policy via journal article
- Impt open Qs on scope
www.statnews.com/2026/01/26/f...
Reposted by Steve Joffe
On NPR on Friday, there was a story of a 4-year-old--an American citizen--who hasn't left her house since early December, not even to play in the yard. And her 8-year-old brother recently stopped going to school, too. Their father is undocumented, and the family doesn't want to risk him being taken.
January 26, 2026 at 3:47 AM
On NPR on Friday, there was a story of a 4-year-old--an American citizen--who hasn't left her house since early December, not even to play in the yard. And her 8-year-old brother recently stopped going to school, too. Their father is undocumented, and the family doesn't want to risk him being taken.
Reposted by Steve Joffe
Wife and I in tears reading this…
January 26, 2026 at 4:30 AM
Wife and I in tears reading this…
Reposted by Steve Joffe
Thank you to my alma mater’s president for writing this. Will other higher education leaders follow his lead?
"We should bear witness to the brutality and demand that our government protect our freedoms—not crush them with armed, masked men who think they can act with impunity. As people who have chosen learning, it’s the least we can do." —Wesleyan University President @msroth.bsky.social on Minneapolis
Minneapolis is Now Ground Zero for Our Democracy
www.wesleyan.edu
January 25, 2026 at 3:30 PM
Thank you to my alma mater’s president for writing this. Will other higher education leaders follow his lead?
Reposted by Steve Joffe
ICE detain yet another minor child—chase him down his own street and tackle him to pavement.
"I am legal! I am legal!" he cries over and over in Spanish.
Agent pins the boy down in snow—he desperately tries to keep his exposed hands from freezing at -25°F wind chill temperature.
Minneapolis, MN
"I am legal! I am legal!" he cries over and over in Spanish.
Agent pins the boy down in snow—he desperately tries to keep his exposed hands from freezing at -25°F wind chill temperature.
Minneapolis, MN
January 23, 2026 at 4:45 PM
ICE detain yet another minor child—chase him down his own street and tackle him to pavement.
"I am legal! I am legal!" he cries over and over in Spanish.
Agent pins the boy down in snow—he desperately tries to keep his exposed hands from freezing at -25°F wind chill temperature.
Minneapolis, MN
"I am legal! I am legal!" he cries over and over in Spanish.
Agent pins the boy down in snow—he desperately tries to keep his exposed hands from freezing at -25°F wind chill temperature.
Minneapolis, MN
Reposted by Steve Joffe
"There’s good historical reason to worry that an authoritarian govt leader collecting a registry of Jews, under the pretext of protecting Jews, while that leader has referred to Jews as “disloyal,” & [his] coalition has many outspoken Jew haters & Holocaust deniers, may not end up so well for Jews."
Trump’s Chilling Weaponization of Confidential Government Records
Remind me—who else in history made lists of Jewish intellectuals and people with disabilities?
www.thebulwark.com
January 23, 2026 at 2:01 AM
"There’s good historical reason to worry that an authoritarian govt leader collecting a registry of Jews, under the pretext of protecting Jews, while that leader has referred to Jews as “disloyal,” & [his] coalition has many outspoken Jew haters & Holocaust deniers, may not end up so well for Jews."
Reposted by Steve Joffe
So much going on right now but for those of you who care about FDA, @pzettler.bsky.social, @stevejoffe.bsky.social, @rachelsachs.bsky.social, @reshmagar.bsky.social + I have a 2 part commentary in @healthaffairs.bsky.social Forefront on the new plausible mechanism pathway. Link to Part 1 below.
The Promise And Perils Of FDA’s New ‘Plausible Mechanism’ Pathway (Part 1) | Health Affairs Forefront
In part 1 of this article, we describe FDA’s broadly flexible approach to meeting challenges in rare disease drug development and summarize FDA’s initial, limited policy efforts to address them. We th...
www.healthaffairs.org
January 22, 2026 at 5:57 PM
So much going on right now but for those of you who care about FDA, @pzettler.bsky.social, @stevejoffe.bsky.social, @rachelsachs.bsky.social, @reshmagar.bsky.social + I have a 2 part commentary in @healthaffairs.bsky.social Forefront on the new plausible mechanism pathway. Link to Part 1 below.
Reposted by Steve Joffe
Everyone in America should have to see these cases and think about what they mean for the kind of society we are becoming. They killed a mom in her minivan. And now they have grabbed this poor sweet kid, used him as bait to grab his dad, and sent him to a detention center in Texas.
January 22, 2026 at 12:41 PM
Everyone in America should have to see these cases and think about what they mean for the kind of society we are becoming. They killed a mom in her minivan. And now they have grabbed this poor sweet kid, used him as bait to grab his dad, and sent him to a detention center in Texas.
Reposted by Steve Joffe
I'm very pleased that the leaders of the Reform, Conservative, and Reconstructionist movements of American Judaism issued this statement condemning violent immigration enforcement: www.reconstructingjudaism.org/news/jewish-...
Jewish Cross-Denominational Statement Against Violent Immigration Enforcement - Reconstructing Judaism
Adding our voices to millions of others across the United States, leaders of the Reform, Conservative/Masorti, and Reconstructionist Movements of Judaism condemn, in the strongest terms, the violence ...
www.reconstructingjudaism.org
January 22, 2026 at 12:13 AM
I'm very pleased that the leaders of the Reform, Conservative, and Reconstructionist movements of American Judaism issued this statement condemning violent immigration enforcement: www.reconstructingjudaism.org/news/jewish-...
Reposted by Steve Joffe
Listing the Jews rarely ends well for the Jews.
bsky.app/profile/mcbr...
bsky.app/profile/mcbr...
Penn Calls Government’s Demand for Lists of Jewish Staff ‘Disconcerting’ www.nytimes.com/2026/01/20/u...
Penn Calls Government’s Demand for Lists of Jewish Staff ‘Disconcerting’
www.nytimes.com
January 21, 2026 at 2:27 AM
Listing the Jews rarely ends well for the Jews.
bsky.app/profile/mcbr...
bsky.app/profile/mcbr...
Good to see this effort to make $$$ gene therapy for sickle cell disease more accessible. www.npr.org/2026/01/20/n...
Medicaid has a new way to pay for costly sickle cell treatment: Only if it works
Medicaid is doing a novel payment system for the new, promising and expensive sickle cell treatment. It may become a model for all gene therapies being developed.
www.npr.org
January 20, 2026 at 7:35 PM
Good to see this effort to make $$$ gene therapy for sickle cell disease more accessible. www.npr.org/2026/01/20/n...
Reposted by Steve Joffe
Just published by my physician mentee near the front lines in Ukraine. Extraordinary.
Bioethics is Not a Luxury in Ukraine : The Hastings Center for Bioethics
On the threshold of the fifth year of full-scale war, we find ourselves in a reality where human life is questioned every day. In a country where the
www.thehastingscenter.org
January 20, 2026 at 5:31 PM
Just published by my physician mentee near the front lines in Ukraine. Extraordinary.
The consent form Louis Waskansky signed before undergoing the first-ever human heart transplant, in 1967.
January 20, 2026 at 2:44 PM
The consent form Louis Waskansky signed before undergoing the first-ever human heart transplant, in 1967.
Reposted by Steve Joffe
I think a good strategy for your non-leftist social media presence (ie everywhere but here) is to give this photo - the remains of Danish soldiers returning in coffins after being killed in America's war in Afghanistan - as wide an audience as possible. Remind people who we're betraying
January 19, 2026 at 4:32 PM
I think a good strategy for your non-leftist social media presence (ie everywhere but here) is to give this photo - the remains of Danish soldiers returning in coffins after being killed in America's war in Afghanistan - as wide an audience as possible. Remind people who we're betraying
Reposted by Steve Joffe
Please share widely.
New at Can We Still Govern?
"I am writing as an ordinary citizen of Minneapolis/St Paul...to share with the outside world what is really going on ─ the terror being inflicted upon a U.S. city and state by our federal government."
Please read, share, help. 🧵
donmoynihan.substack.com/p/dispatch-f...
"I am writing as an ordinary citizen of Minneapolis/St Paul...to share with the outside world what is really going on ─ the terror being inflicted upon a U.S. city and state by our federal government."
Please read, share, help. 🧵
donmoynihan.substack.com/p/dispatch-f...
Dispatch from the occupation
What life is like in Minneapolis now
donmoynihan.substack.com
January 17, 2026 at 6:39 PM
Please share widely.
"If this change happens, over 100,000 children who are diagnosed with autism each year could claim compensation from the VICP...The expected groundswell of compensation claims and lawsuits will easily bankrupt the vaccine compensation pool..."
From @zekeemanuel.bsky.social.
wapo.st/3NyZ9Yt
From @zekeemanuel.bsky.social.
wapo.st/3NyZ9Yt
Opinion | How RFK Jr. plans to bankrupt vaccine manufacturers
Health Secretary Robert F. Kennedy Jr. wants to flood the vaccine injury compensation program to hurt vaccine access in the U.S.
wapo.st
January 17, 2026 at 7:20 PM
"If this change happens, over 100,000 children who are diagnosed with autism each year could claim compensation from the VICP...The expected groundswell of compensation claims and lawsuits will easily bankrupt the vaccine compensation pool..."
From @zekeemanuel.bsky.social.
wapo.st/3NyZ9Yt
From @zekeemanuel.bsky.social.
wapo.st/3NyZ9Yt