His custom cancer therapy is in an NIH freezer. He may not get it in time.; The Washington Post, June 18, 2025

 Carolyn Y. Johnson, The Washington Post; His custom cancer therapy is in an NIH freezer. He may not get it in time.

[Kip Currier: Yet another compelling example why effective, well-staffed, responsive government agencies are vital. And another example of how destructive the Trump 2.0 DOGE-facilitated cuts have been and are to the lives of many Americans.

When reading this article, imagine you are the person waiting for the experimental cancer treatment that may save your life. Tragically, you may not get that treatment in time, however, simply because Trump fired the workers who might have been able to deliver it to you.

Fortunately, this Washington Post article is educating us about Richard Schlueter's "time is of the essence" need for his tailored treatment. What about all the other people in similar situations as Schlueter, though, whose stories and urgent needs we don't know?

Our elected officials must do better jobs advocating for the needs of the American people and getting results.

And we the people must do better jobs at being informed citizens ourselves, supporting programs that work for the common good, and voting for candidates committed to the public interest and person-centered, well-functioning democracies that are empathetic and responsive to the practical and aspirational needs of individuals and communities.

Remember these Trump 2.0 DOGE cuts when it comes time to vote for your state and federal representatives.]

[Excerpt]

"In early June, a scan revealed that the cancer that started in his tonsils was racing through his bones. That day, he called a medical team at the National Institutes of Health that had created an experimental cell therapy, custom-made to attack his cancer as part of a clinical trial. He needed it. Now.

Instead, he received more bad news: His therapy would be delayed at least a month because of staff cuts at NIH.

A week later, Schlueter and his wife, Michelle, saw NIH Director Jay Bhattacharya push back on concerns raised by his own staff that the ouster of essential employees and other disruptions to the biomedical research agency were harming science and patients. Bhattacharya said on X that objections raised in a document called the Bethesda Declaration contained “fundamental misconceptions” about NIH’s new direction. Each termination was being reviewed, and some workers were reinstated, he added.

But the Schlueters had a front-row seat to the effects of the job losses. Richard’s therapy was in a freezer, nearly ready to go. All along, they had been told the final step of preparation takes three to four weeks. But on June 3, his NIH doctor informed him that it would now take eight to 10 weeks because of cuts to essential lab personnel — a painful illustration of the life-and-death stakes of the administration’s approach to shrinking the government workforce.

“I’m petrified. I have to do something,” Richard said. “My cancer is on the move.”

The Washington Post first reported in early April that the production of specialized immune-cell therapies for metastatic cancer patients was delayed. Two highly skilled technicians who prepared cells for treatments were fired in the probationary purge in February, according to Steven Rosenberg, an NIH immunotherapy pioneer who leads multiple trials. He declined to say how many patients were affected, but his team now treats one patient per week, down from two or three before the cuts."

‘No way to invest in a career here’: US academics flee overseas to avoid Trump crackdown; The Guardian, June 15, 2025

Marina Dunbar , The Guardian; ‘No way to invest in a career here’: US academics flee overseas to avoid Trump crackdown

"Schuster is one of many budding academics reflecting what could become a significant American brain drain, sending the brightest minds in the country to flee the US and take their scholarly endeavors elsewhere. Historically, the US has attracted top talent from around the world, but the moves by the Trump administration may have reversed these conditions in record time.

Research institutions are feeling the strain from funding cuts from some of the biggest grant-making bodies in the world. The National Science Foundation (NSF) funds about 25% of federally backed basic research at US universities, but Trump’s proposed budget would cut over $5bn, or 57%, from its budget, chopping it from roughly $9bn down to $3.9bn. The US National Institutes of Health would lose about 40% of its budget compared to last year.

But those cuts aren’t the only cause for anxiety. Nerves throughout the scholarly community are also on edge given what is widely perceived as a historic attack on academic freedom through administration assaults against universities such Columbia and Harvard University under the guise of rooting out antisemitism and diversity, equity and inclusion programs. Dozens more universities are waiting for their turn."

The NIH delivers a major victory for animal ethics in science; The Hill, May 24, 2025

 CATHARINE E. KREBS AND ELIZABETH BAKER , The Hill; The NIH delivers a major victory for animal ethics in science

"The National Institutes of Health recently announced a landmark initiative to expand human-based science while reducing animal use. The world’s largest funder of biomedical and public health research will now prioritize innovative health research, leaving outdated animal experiments behind.

The announcement highlights the scientific limitations of translating findings from animals to humans. Paired with growing crises of illnesses such as Alzheimer’s disease, cancer and heart disease, these limitations stagnate medical advances. NIH investment in research to better understand and treat disease is crucial for improving the health of Americans. As Director Jay Bhattacharya points out, by expanding human-based research, this initiative will usher in a new era of innovation, improve health care outcomes and deliver life-changing treatments."

U.S. autism data project sparks uproar over ethics, privacy and intent; The Washington Post, April 25, 2025

Ariana Eunjung Cha

, 

Caitlin Gilbert

 and 

Fenit Nirappil

 , The Washington Post; U.S. autism data project sparks uproar over ethics, privacy and intent

"The Trump administration has retreated from a controversial plan for a national registry of people with autism just days after announcing it as part of a new health initiative that would link personal medical records to information from pharmacies and smartwatches.

Jay Bhattacharya, director of the National Institutes of Health, unveiled the broad, data-driven initiative to a panel of experts Tuesday, saying it would include “national disease registries, including a new one for autism” that would accelerate research into the rapid rise in diagnoses of the condition.

The announcement sparked backlash in subsequent days over potential privacy violations, lack of consent and the risk of long-term misuse of sensitive data.

The Trump administration still will pursue large-scale data collection, but without the registry that drew the most intense criticism, the Department of Health and Human Services said."

Move Fast and Break the Government; The Bulwark, January 28, 2025

SAM STEIN AND 

BENJAMIN PARKER

, The Bulwark; 

Move Fast and Break the Government

"A letter from the Office of Management and Budget, obtained last night by The Bulwark, instructed federal agencies that they were to “temporarily pause all activities related to obligation or disbursement of all Federal financial assistance,” effective “on January 28, 2025, at 5:00 PM.”

What, exactly, does this mean? The note was vague, stating that the pause was for activities that “may be implicated by [Trump’s] executive orders, including, but not limited to, financial assistance for foreign aid, nongovernmental organizations, DEI, woke gender ideology, and the green new deal.” But immediate speculation among those scrutinizing the letter was that things like food assistance, financial aid to students, grants for university-based research, and many other government functions could come to a stop. The scope of what could be impacted was honestly hard for them to comprehend.

“Nobody knows,” said one person on the receiving end of the memo, when asked the extent of the federal aid that would stop.

Perhaps that’s the point.

In recent days, agency officials and those dependent on government contracts have described being left in a state of darkness by the administration they now serve; like families cowering in their basement shelters waiting to go out to see the damage the tornado has caused. Getting guidance on what was now allowed and what was prohibited was hard to do, in part lobbyists and even Congress were no better informed.

Federal health and research agencies appear to be particularly confused. Over the weekend, several people posted online about their clinical cancer trials having come to an abrupt halt as the National Institutes of Health imposed restrictions on hiring, travel, communication, and other functions. The scientific and medical community was, rightfully, alarmed at the possibility that people suffering from deadly diseases would be denied treatment by their own government.

By Monday, the NIH finally issued some guidance. In another letter obtained by The Bulwark, acting NIH Director Matthew Memoli assured colleagues that, “Clinical trials at NIH or NIH-funded institutions are ongoing,” and that “travel restrictions do not apply to research participants traveling to NIH to participate in a clinical trial or protocol.”

A victory? Yes. But a limited one. In that same letter, Memoli said that no money would be available for “new studies, new equipment, or research services unrelated to the studies that were started prior to Jan. 20, 2025.” In other words, don’t make future plans.

And it’s not just at the NIH, either. Two people directly familiar with the matter told The Bulwark on Monday that the National Science Foundation abruptly canceled peer review panels. “All review panels scheduled for the remainder of this week, 1/28-1/31 will be rescheduled to a future date as appropriate,” read the guidance given. The NSF did not return repeated requests for comment. Nor has the White House over the past few days.

The breakneck speed of Trump’s orders could quickly turn into an acute constitutional crisis, with the executive branch essentially usurping the power of the purse from the legislative body. Certainly, it has already had profound political and psychological effects. Federal employees described utterly dispirited workplaces, where paranoia is creeping in. There is a belief that the new administration is set on turning the government into a tool for Trump and searching for the pretext to fire anyone unwilling to go along. It did not go unnoticed that the statement from the DOJ official announcing the firings on Monday noted that “Acting Attorney General James McHenry made this decision because he did not believe these officials could be trusted to faithfully implement the President’s agenda” (emphasis ours).

But it’s also not hard to see how the tremors being sent throughout the government could hurt Trump in the long run. It starts with small examples of over-compliance with the vague orders that the administration has to walk back, like the Air Force removing videos honoring the Tuskegee Airmen from training materials because they believe those videos violated the administration’s anti-DEI push. They move to larger problems, like prison guards who are responsible for securing ISIS militants no longer turning up for work because their salaries have been cut. And then they become disasters on your watch, like infants dying because water was cut off in the foreign aid freeze.

That’s the thing about moving fast and breaking things. Sometimes you end up breaking things you wish you hadn’t and can’t repair."

She worked in animal research. Now she’s blocked from commenting on it.; The Washington Post, May 6, 2024

 Rachel Weiner, The Washington Post; She worked in animal research. Now she’s blocked from commenting on it.

"For a long time, Madeline Krasno didn’t tell other animal rights advocates that she had worked in a monkey research lab as a college student. It had taken her years to understand her nightmares and fragmented memories as signs of post-traumatic stress disorder. And some activists could be vicious to former lab workers.

But four years after she graduated from the University of Wisconsin at Madison, Krasno started posting online about her experiences. Eventually, she started tagging the school in those posts and then commenting on its pages.

Many of those comments disappeared. As she would later learn, it was not a mistake or a glitch. Both the university and the National Institutes of Health were blocking her comments. Now with support from free speech and animal rights organizations, she is suing both institutions."

Addressing the epidemic of high drug prices; Harvard Law Today, January 5, 2024

Jeff Neal, Harvard Law Today; Addressing the epidemic of high drug prices

"The Biden administration is once again targeting high drug prices paid by Americans. This time, officials are focused on prescription medications developed with federal tax dollars. The United States government, through the National Institutes of Health (NIH), awards billions of dollars of research grants to university scientists each year to fund biomedical research, which is often patented. The universities in turn grant exclusive licenses to companies to produce and sell the resulting drugs to patients in need. But what happens if a drug company fails to make a medication available, or sets its price so high that it is out of reach for a significant percentage of patients?

To tackle this problem, the Biden administration recently released a “proposed framework” that specifies when and how the NIH can “march in” and award the rights to produce a patented drug to a third party if the patent licensee does not make it available to the public on “reasonable terms.” The plan is based on a provision included in the Bayh-Dole Act, a 1980 federal law which was designed to stimulate innovation by encouraging universities to obtain and license patents for inventions resulting from federally funded research.

According to Harvard Law School intellectual property expert Ruth Okediji LL.M. ’91, S.J.D. ’96, although the Biden administration’s proposed framework for using government march-in rights to lower drug costs is an important development, whether it will be successfully implemented and result in meaningful drug price reductions remains to be seen. Harvard Law Today recently spoke to Okediji, the Jeremiah Smith, Jr. Professor of Law and faculty director of Global Access in Action(GAiA) at the Berkman Klein Center, about the new proposal and the legal challenges it might face."

The NIH and Moderna Are Fighting Over Who Owns Their Vaccine; Intelligencer, November 10, 2021

Matt Stieb, Intelligencer; The NIH and Moderna Are Fighting Over Who Owns Their Vaccine

"While last year the government was calling the shot the “NIH-Moderna COVID-19 vaccine,” the biotech giant filed a patent made public this week in which it found that “only Moderna’s scientists” designed the vaccine. The patent, filed in July, is specific to the genetic sequence creating spike proteins, which allow vaccine recipients to build antibodies to block the virus when the body is actually exposed. As the New York Times reports, the NIH was surprised by the attempt at a solo effort. If the two parties cannot figure out a way to split the credit, the government will have to determine if it will take the expensive step of going to court. Already, the U.S. has paid $10 billion in taxpayer funds for Moderna to help create the vaccine, test its efficacy, and provide shots for the federal government."

All of Us program wants to change the face of medicine; University of Pittsburgh: University Times, January 8, 2019

Susan Jones, University of Pittsburgh: University Times; All of Us program wants to change the face of medicine

"Dr. Steven Reis wants all of you to become part of All of Us.

Pitt received a $46 million award in 2016 from National Institutes of Health to build the partnerships and infrastructure needed to carry out the All of Us initiative, which seeks to gather health information from 1 million people nationwide to create a database to study different diseases and other maladies, and in the process change the face of medicine.

In Pennsylvania, Pitt is responsible for recruiting 120,000 participants and by early this week had reached 11,610. Nationally, there are more than a dozen other organizations now gathering participants and more than 80,000 people have enrolled nationwide. There are between 40 and 50 people working on the project at Pitt...

The institute “supports translational research, meaning how to get research from the bench to the bedside, to the patient, to practice, to the community, to health policy,” Reis said...

The information will be stored in a secure central database created by Vanderbilt University Medical Center, Verily Life Sciences (a Google company) and the Broad Institute in Cambridge, Mass. Volunteers will have access to their study results, along with summarized data from across the program."

Open-data contest unearths scientific gems — and controversy; Nature, March 8, 2017

Heidi Ledford, Nature; 

Open-data contest unearths scientific gems — and controversy

"Now one-third of the 60 papers that Wright's team had planned to publish are in jeopardy of being scooped. “I think the incentives to do these trials will be dramatically lessened if this is going to be the expectation going forward,” he says. “It's a huge time commitment.”

But others favour making data from trials publicly available as soon as possible. Doing so, they argue, opens up the possibility of a wide range of additional analysis, and speeds up analyses that can yield important clinical insights. “Clinical trial data are quite valuable, but usually they're kept locked away,” says Sandosh Padmanabhan, a participant in the competition who researches cardiovascular genomics at the University of Glasgow, UK. “Everybody who does clinical trials needs to open up their data for everybody to use.”"

Henrietta Lacks’s family wants compensation for her cells; Washington Post, February 14, 2017

Andrea K. McDaniels, Washington Post; Henrietta Lacks’s family wants compensation for her cells

"Francis Lanasa, the attorney who will represent the family, said that he would use a “continuing tort” argument, alleging that Hopkins had continued to violate the “personal rights, privacy and body parts” of Henrietta Lacks over time.

“They are literally the foundation of modern medical science,” Lanasa said of the cells."

The Institutional Animal Care and Use Committee; NIH, 2011

NIH; The Institutional Animal Care and Use Committee:

"Responsibilities

The IACUC is responsible for oversight of the animal care and use program and its components as described in the Public Health Service (PHS) Policy on Humane Care and Use of Laboratory Animals (Policy) and the Guide for the Care and Use of Laboratory Animals (Guide). Link to Non-U.S. Government Site - Click for Disclaimer Its oversight functions include an ongoing assessment of animal care and use. IACUC responsibilities include:

Review, at least semiannually, the institution's program for the humane care and use of animals;

Inspect, at least semiannually, the institution's animal facilities (including satellite facilities);

Prepare reports to the Institutional Official (IO) of the IACUC evaluations;

Review animal welfare concerns;

Make recommendations to the IO on any aspect of the animal program, facilities, or personnel training;

Review and approve, those components of PHS conducted or supported activities related to the care and use of animals;

Review and approve, proposed significant changes to the use of animals in ongoing activities; and

Be authorized to suspend an activity involving animals.

Membership

[Five People]The IACUC membership must consist of at least 5 members and includes:

one veterinarian with training or experience in laboratory animal science and medicine, who has direct or delegated authority and responsibility for activities involving animals at the institution;

one practicing scientist experienced in research with animals;

one member whose primary concerns are in a nonscientific area (e.g., ethicist, lawyer, member of the clergy); and

one member who is not affiliated with the institution other than as a member of the IACUC."

Pitt faces animal rights scrutiny; Pittsburgh Post-Gazette, 3/2/14

Anya Sostek, Pittsburgh Post-Gazette; Pitt faces animal rights scrutiny:

"An animal rights group has filed a letter of complaint against the University of Pittsburgh, asking that the school be fined for violations against the federal Animal Welfare Act in its research labs.

The group, Stop Animal Exploitation Now, charges two rabbits died while being used in Pitt experiments and that there were several instances of primate escapes and other infractions, based on information Pitt voluntarily reported to the National Institutes of Health.

The group is asking the U.S. Department of Agriculture, which enforces the Animal Welfare Act, to fine Pitt $80,000 -- the maximum for what it counts as eight infractions.

Pitt acknowledges that "minor violations" occurred but said the violations already had been investigated by the NIH and that the agency did not find cause for further action."