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Contributor: Fuel drug development, not Big Pharma’s profits

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Contributor: Fuel drug development, not Big Pharma’s profits

As a kid, I wanted to be an astronaut or a baseball player.

When I realized I was prone to motion sickness, I backed off the astronaut plan. Later, I learned I couldn’t hit a curveball.

Today, at 65, after a career in media, I have a new plan: to be among the first to recover from ALS, amyotrophic lateral sclerosis, which has an average survival rate of two to five years. I’m in year two.

I feel optimistic. Every week I read about potential breakthrough drugs. “Novel ALS therapy a game-changer,” declares one. “Treatment Helps Some Patients Improve,” says another. And so on.

However, our U.S. drug development system is slow and dysfunctional. Without systemic fixes, today’s promising ALS drugs will take 10 years to reach sick people like me.

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For 35,000 Americans who have ALS, that’s essentially a death sentence.

Happily, there is a plan to speed up the system.

It’s called ACT for ALS, a bill pending in the House. An earlier effort like this streamlined the process of getting new treatments for 700-plus ALS patients, with results still pending.

That’s good news, but the funding for that effort — about $100 million yearly — is a fraction of what’s needed.

Five years ago, we ended the COVID crisis by investing $18 billion in just a few months. We saved untold millions of lives, calling the effort Operation Warp Speed.

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Where is Operation Warp Speed for ALS?

There are more than 180 companies and more than 200 drugs in the ALS category pipeline, according to DelveInsight, a pharmaceutical market research firm. Virtually all of them are starving for investment.

They are stuck in a system that favors big, slow-moving pharmaceutical companies and stymies smaller, more nimble researchers. That’s the most harmful dysfunction right now.

The chief science officer at a small, cutting-edge research firm knows this all too well. He shared his frustration in personal correspondence with me, recounting 15 grant applications related to ALS that were all rejected after being reviewed by “key opinion leaders.”

These individuals — unknown outside the medical establishment — are paid by big pharmaceutical companies to review new drugs in development, and we’ve known for years that they tend to overlook drugs created by small companies.

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In 2014, a watchdog at UC San Francisco found these opinion leaders are biased toward favorable conclusions about drugs developed by Big Pharma. That same year, the Los Angeles Times reported about their dark role in the opioid epidemic: Even as the lights flashed red, key opinion leaders promoted their patrons’ addictive drugs, which adversely affected 1 in 3 adults in the U.S.

Nature Reviews summed it up in 2021, saying key opinion leaders offer “opinion-based influence … rather than innovation and knowledge.”

Dismantling the problematic system is long overdue. Let’s put those small companies on a fair and level playing field with Big Pharma. Let’s do what the U.S. has long prided itself on doing: Champion the tenacious underdogs.

The Trump administration, for all its flaws, could play a positive role. The iconoclastic director of the National Institutes of Health, Jay Bhattacharya, has emphasized “encouraging different perspectives.” That’s the opposite of the current playbook.

Marty Makary, commissioner of the Food and Drug Administration (reportedly now on the ropes), declared on March 18 that the agency would speed the shift to human- and data-centric drug development pipelines, saying, “It’s faster, it’s more effective … and it’s better prediction.”

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Although I can’t take credit for Makary’s direction, I said the same thing in a recent op-ed.

The spirit of attempting difficult things makes me feel like a kid again. Back then, whether I was anticipating an Apollo mission or the next battle between Willie Mays and Sandy Koufax, I was always looking forward to something.

My current heroes are not astronauts or hall-of-famers. They are ALS patients like me, willing to try investigative drugs, even as they realize there are no guarantees.

When I watched the live-streamed ACT for ALS news conference hosted by one of the bill’s sponsors, I was amazed by Brian Wallach and Dan Tate. Both have been living for nine years with their ALS diagnosis. Both are raising money for ALS research.

I feel like yelling, “Go team!”

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At the event, Rep. Morgan Griffith (R-Va.), chairman of the House Subcommittee on Health, said something that made me smile big: “There is a belief that we may now have people who survive ALS.”

As another of my boyhood heroes, Hank Aaron, said: “Whether I was in a slump or feeling badly or having trouble off the field, my motto was always to keep swinging.”

As a country, let’s keep swinging at ALS, even if it is one of those darn curveballs.

Kevin J. Morrison is a consultant for nonprofit and other private-sector organizations and a senior producing director at Stanford University.

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Scientists Press Congress on Dismissal of National Science Foundation Board and Research Funding

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Scientists Press Congress on Dismissal of National Science Foundation Board and Research Funding

More than 2,500 scientists said in a letter to Congress on Monday that President Trump’s dismissal of the National Science Foundation’s oversight board was an “alarming attack” on research funding that could put the United States at a disadvantage with rivals, especially China.

“We stand with the National Science Board, and call on Congress, as an equal branch of government, to rapidly and firmly support science by calling for the reinstatement of terminated National Science Board members,” the signatories wrote.

In a separate letter last month, more than a dozen former leaders of the foundation urged the White House and Congress to quickly fill the leadership vacuum President Trump created at the agency. Established in 1950, the agency has been responsible for annually distributing about $9 billion in research grants in recent years. That money funds much of the public science research in the United States, from artificial intelligence to astronomy.

The former board members have been trying to call attention to what they say is a growing research funding gap with China. Last week, the N.S.F. published the board’s 2026 report on the state of U.S. science and engineering, which the board had finalized before its dismissal. In the report, the board warned China had overtaken the United States in research and development expenditures.

That gap is likely to grow as science funding under the Trump administration is at a low point.

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As of May 1, the agency has committed 10 percent of its congressionally appropriated funds, roughly half of what the foundation had awarded by this point in previous fiscal years, according to Grant Witness, which tracks scientific grants.

A White House spokesman justified the decision to fire the board by pointing to a 2021 Supreme Court decision about the governance structure at another government agency. The spokesman added that the N.S.F. was delivering on Mr. Trump’s pledge to cement America’s technological and innovative dominance.

Former agency board members, however, voiced concerns about the foundation’s ability to fulfill its mission. The dismissal of the board and the yearlong vacancy of the role of foundation director has left the agency “in a very precarious position,” said Yolanda Gil, a computer science professor at the University of Southern California and former board member.

Four people formerly on the board date the deterioration of its relationship with the administration to April 2025, when the N.S.F. canceled hundreds of active research grants without consulting any board members. Shortly thereafter, the foundation’s director, Sethuraman Panchanathan, announced his resignation; another board member, Alondra Nelson, resigned a few weeks later.

Ms. Nelson, a social science professor at the Institute for Advanced Study, said that she had seen the writing on the wall. “It was so clear that our work was going to be compromised,” she said.

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Another former board member said the administration had left scientists in the dark on its plans. “It almost didn’t matter what question we asked, the answer would almost come back exactly the same, and it would always be along the lines of, ‘that’s an active conversation with the administration,’” said Keivan Stassun, a physics and astronomy professor at Vanderbilt University. “A lot of euphemism, but no actual answers.”

With limits on its ability to conduct oversight, the board turned to its responsibility of advising Congress on science policy.

Last May, the White House released a budget request for the 2026 fiscal year that proposed slashing N.S.F.’s funding by more than half, but board members advised Congress to maintain similar funding levels as in previous years.

Divided into small groups, board members told lawmakers of both parties about the importance of funding science research, raised the specter of China’s growing scientific output and discussed how new technology could help modernize the N.S.F.

In the end, Congress appropriated $8.75 billion to the research funding agency, a modest cut from the $9.1 billion in fiscal year 2025.

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Last month, Mr. Trump released his budget plan for the 2027 fiscal year, again calling for significant N.S.F. cuts. This time, the White House requested about $4.9 billion for the agency, a more than 40 percent cut.

In the proposal, the administration also said it wanted the N.S.F. to fund a $900 million project to build an ice-breaking vessel. Arctic cutters are a priority for this administration, and last October Mr. Trump signed a memorandum directing the Coast Guard to build four Arctic Security Cutters in Finland. As of February, the Coast Guard awarded contracts for 11 ships. It is unclear if there is any connection between the Coast Guard’s vessels and the one Mr. Trump has proposed that the N.S.F. fund.

For the former board members, who were nominally responsible for approving major N.S.F. programs like the Arctic vessel venture, the proposal came as a surprise.

“It just sort of appeared in the president’s budget request,” said Mr. Stassun, who led the board’s subcommittee on funding larger facilities and projects. “It had not gone through any of the normal processes,” he added.

But before board members could discuss the shipbuilding proposal or begin advising Congress on funding levels for the N.S.F., they were dismissed.

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Hantavirus fears heighten with 4 Californians exposed to the disease. Is the alarm warranted?

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Hantavirus fears heighten with 4 Californians exposed to the disease. Is the alarm warranted?

In the early weeks of the COVID-19 pandemic, health officials struggled to impress upon the public the grave risks associated with the disease, as well as how easily it could spread.

Now, six years later, public fears have surrounded another type of virus that has killed and sickened passengers on a Dutch-flagged cruise ship; four Californians who were exposed to the virus on the ship recently returned to the United States. This time, however, officials are taking a very different approach to messaging surrounding the deadly Andes virus — a type of hantavirus.

While officials and infectious disease experts have been quick to note the seriousness of the rodent-borne disease, they have also stressed key differences between hantavirus and COVID-19. Namely, that this virus is far less transmissible.

Public alarm over the illness began to grow following reports that three passengers died aboard the stricken vessel, MV Hondius. Worries grew further over the weekend when officials announced that 18 U.S. cruise passengers had disembarked and were returning home.

During a media briefing Monday, the California Department of Public Health said that four state residents had been exposed to the virus, but none had contracted it. Three of them were cruise ship passengers, while the fourth was a Sacramento resident who was on a plane with an infected person in South Africa.

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As of now, all four individuals lack symptoms and appear healthy, according to Dr. Erica Pan, director of the department.

One passenger, a Santa Clara resident, disembarked the cruise before the outbreak was recognized and returned to California, she said.

“This person was reported to our department last week and is being monitored by the local public health department where they live,” Pan said.

She added that “the other two passengers disembarked over the weekend in the Canary Islands and have been flown” to a biocontainment facility at the University of Nebraska Medical Center — which is home to the National Quarantine Unit, the only federally funded facility of its kind in the nation.

The quarantine unit is designed to safely house and monitor people who may have been exposed to “high consequence” infectious diseases. A separate biocontainment unit was also created to care for such patients.

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The individuals in Nebraska are undergoing a health assessment, and federal authorities will determine when they can return to California. After their return, local health officials will monitor them as necessary.

California’s current public health monitoring protocol includes daily temperature checks, assessment for any symptoms consistent with hantavirus, and direction to modify activities as necessary.

The MV Hondius had 147 people aboard: 86 passengers and 61 crew members. Sixteen passengers from the U.S. boarded a medical repatriation flight arranged by the federal government to Nebraska and remained there as of Monday, including one person who tested “mildly” positive for hantavirus. That person is staying in biocontainment at the University of Nebraska Medical Center.

Two other passengers, one of whom is showing symptoms of the virus, traveled to Atlanta and are staying in a biocontainment facility at Emory University.

That brings the total number of cases of hantavirus to nine, seven laboratory confirmed and two probable cause, including three deaths.

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It’s reasonable for people to be concerned about this latest outbreak, said Dr. Nicole Iovine, chief medical epidemiologist and an infectious disease expert at the University of Florida Shands Hospital. Photographs of healthcare personnel in full personal protective equipment assisting cruise passengers are likely to spark recollections of the pandemic.

Even though this is not an easily transmitted disease, it is transmissible and has a high mortality rate, Iovine said. U.S. Centers for Disease Control and Prevention officials said 38% of people who develop respiratory symptoms from hantavirus may die from the disease.

“So it’s reasonable for the medical personnel to take maximal precautions so that they don’t contract it,” Iovine said. “It’s not a reflection of [the virus] being extremely contagious.”

In the U.S., hantavirus cases occur year-round and are transmitted via the urine, feces and saliva of wild rodents.

There were a total of 890 laboratory-confirmed cases of hantavirus in the U.S. between 1993 and 2023, according to the CDC.

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The Andes virus, a strain of the disease that’s endemic to Argentina, similarly passes from the exposure of wild rodent particles. Infected humans can then transmit the virus to other people.

Unlike other infectious respiratory illnesses, hantavirus “infects cells very deep in the lungs, so it’s not as easily transmitted then when someone is speaking or coughing,” Iovine said.

COVID-19 transmission occurred when an infected person breathed out droplets and very small particles that contained the virus. Other humans could then inhale the particles or come into contact with them on the surface of objects.

“That’s one of the reasons that makes it much more difficult to transmit person-to-person, and is the reason why this is just not going to turn into a pandemic,” she said.

Experts say person-to-person transmission of the virus occurs only with close and prolonged contact. The hantavirus outbreak is rare but it’s not unusual for a viral outbreak to occur in a cruise ship, where people are packed in and close to each other, said Dr. Afif El-Hasan, member of the American Lung Assn.’s national board of directors.

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“From an infectious disease standpoint, that is one of the most difficult and challenging situations and one where it’s more easy to catch something versus other situations,” El-Hasan said.

Experts including Scott Pegan, professor of biomedical sciences at UC Riverside, say the average American’s risk of contracting the disease — if they aren’t within close proximity of an infected individual for a prolonged period — is really low.

Pegan acknowledged it’s confusing to the public when a health incident like this occurs because “they hear ‘this is a really bad disease.’”

“At certain levels, we should worry about it because we don’t want to be interfacing with this virus,” he said.

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A Fish That Hitches Rides Where the Sun Doesn’t Shine

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A Fish That Hitches Rides Where the Sun Doesn’t Shine

When danger calls, some animals bare their teeth. Others take to the sky, or curl into protective balls. But the remora — a fish that often hitches a ride on larger marine animals like sea turtles, whales and sharks — sometimes follows a less dignified strategy: It disappears inside a manta ray’s rear end.

In a study published on Monday in the journal Ecology and Evolution, a team of researchers referred to this newly observed behavior as “cloacal diving.” While many questions about this fishy practice remain, there is one thing the team feels sure about.

“It does not look like the manta ray likes it,” said Catherine Macdonald, director of the shark research and conservation program at the University of Miami and senior author of the new study.

While remoras, also known as suckerfish, have been observed diving into the safety of whale-shark cloacae in the past, this is the first time anyone has documented the behavior in manta rays.

The paper uses seven instances of cloacal diving that took place between 2010 and 2025 across all three known species of manta ray. What’s more, the observations, which were gathered by the Marine Megafauna Foundation, occurred in three separate ocean basins, suggesting that this previously unobserved behavior could be common among rays and the remora species that associate with them.

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In some cases, the remora forces itself so far inside the ray’s cloaca that only the very tip of its tail can be seen protruding from the exterior. In others, the ray is not large enough to accommodate the remora’s entire body, and half of the suckerfish hangs out of the ray, like a toddler playing peekaboo beneath a blanket.

“The remoras are pretty much as wide as the cloaca is,” said Emily Yeager, a Ph.D. student at the University of Miami and the lead author of the study. “So it’s fully filling that opening.”

To the researchers’ knowledge, no one has studied how sensitive manta ray cloacae are specifically, though Dr. Macdonald said that her lab would often swab the cloacae of sharks for fecal DNA to better understand what they’d been eating.

“They don’t especially like us sticking a swab up there,” she said. “And that swab is a big Q-Tip compared to a remora.”

While all of this may seem as if it’s a lark — News flash: Fish hides inside another fish’s backside — the findings contribute new information to a topic already hotly debated by scientists: the type of impact remoras have on their hosts.

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Traditionally, experts have seen the interaction between remoras and manta rays as either commensal or mutualistic. In a commensal relationship, one animal benefits while the other is neither benefited nor harmed. In a mutualistic relationship, both creatures benefit: The remora gets a free ride and food, while the manta has its skin cleaned of parasites.

But cloacal diving almost certainly changes the equation, said Eleanor Caves, a sensory biologist at Brown University who was not affiliated with the new study. While the remora’s presence inside the ray is most likely brief, it could interfere with waste discharge or reproduction, or even damage the cloaca’s lining. This may mean the relationship between remoras and manta rays sometimes tilts into a parasitic interaction, in which one species benefits and the other is harmed.

While the researchers provide just seven instances of remoras using manta-ray cloacae as their own personal panic rooms, the fact that the animals are so difficult to see once inside suggests that the behavior is under-documented, at the very least.

“It’s really challenging to study these highly mobile relationships in marine systems,” Ms. Yeager said. “Oftentimes when researchers interact with these organisms, it’s just for a second in time, when we’re scuba diving in one location and one passes over us, or we’re fishing in a site and we bring one to our boat.”

“But these relationships persist 24/7, all of the time,” she added. “And we’re seeing just a snapshot.”

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