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The NIH Ices a Research Project. Is It Self-Censorship?

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by Darius Tahir
Mon, 07 Aug 2023 09:00:00 +0000

Many Americans don't understand a lot about their health. Whether due to people believing conspiracy theories or simply walking out of their doctor's offices without a good idea of what was said, communicating what scientists know has been a long-standing challenge.

The problem has gotten particularly acute with a recent wave of misinformation. And when Francis Collins led the National Institutes of Health, the world's premier medical research agency, he thought he had a solution: to study health communications broadly. “We basically have seen the accurate medical information overtaken, all too often, by the inaccurate conspiracies and false information on social media. It's a whole other world out there,” he said in 2021 as part of a farewell media tour.

“I do think we need to understand better how — in the current climate — people make decisions,” he concluded.

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But Collins' hopes appear dashed. In a sudden reversal, the NIH's acting director, Larry Tabak, has paused — some say killed — the planned initiative, Advancing Health Communication Science and Practice. Its advocates fear the agency has, for political reasons, censored itself — and the science that would've sprung out of this funding stream.

The agency has offered shifting and inconsistent explanations, sometimes outright contradicting itself in the of days. Sources familiar with the project insist that whatever the agency's official story, it has acted unusually, contrary to its normal procedures in deciding what science to fund.

The , both in and outside of NIH, believe the agency is acting in response to political pressures over misinformation and is effectively censoring itself. Efforts to study or push back on inaccurate information have become contentious. The Republican-controlled House of Representatives repeatedly has plunged into the issue by investigating social media firms and government agencies for their efforts to regulate online speech. They've even targeted academics who merely study information flows online. Meanwhile, in July, a federal court in Louisiana issued a decision on a long-simmering brought by a group of Republican attorneys general and anti-vaccine groups to block government officials from communicating with social media companies, with certain exceptions for national security and criminal matters. That ruling has since been stayed.

Even though the NIH has had to navigate political rapids for decades, enduring controversy over stem cell research and surveys on the sexual behavior of , this is a particularly fraught moment. “It is caught up in a larger debate about who gets to decide what is truthful information these days,” said Alta Charo, a professor emerita of law and bioethics at the University of Wisconsin-Madison who has advised the NIH in the past.

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For researchers interested in the topic, however, it's a major loss. The program was deemed potentially so important that it would be supported through the agency's Common Fund: a designation for high-priority programs that cut across normal institutional boundaries. In theory, it would study how health communication works, not merely at an individual doctor-to-patient level, but also how mass communication affects Americans' health. Researchers could examine how, for example, testimonials affect ' use of vaccines or other therapies.

Serious money was on the table. The agency was prepared to spend more than $150 million over five years on the endeavor.

For researchers, it's a necessary complement to the agency's pioneering work in basic research. The NIH has “done a remarkable job discovering the way cells communicate with each other,” said Dean Schillinger, a researcher at the University of California-San Francisco. “When it comes to how people communicate to each other — doctors to patients, or doctors with each other — the NIH has been missing in action.” Now, he said, the tentative efforts to reverse that are met with a “chilling effect.” (Schillinger co-authored an opinion piece in JAMA on these developments.)

After favorable reports from an agency's advisory body last fall, advocates were anticipating more encouraging developments. Indeed, the NIH's budget had touted the concept as recently as March. And participants expected the grant application process would begin toward the end of the year.

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Instead, researchers have heard nothing through official channels. “Investigators have been asking, ‘What's the plan?'” said Schillinger. Officially, “it's been the sound of silence, really.”

That has been a puzzling anticlimax for a program that seemed to have all the momentum. “Given the urgency of misinformation, you would expect — within a year — a formal announcement,” said Bruce Y. Lee, the executive director of the City University of New York's Center for Advanced Technology and Communication in Health.

Advocates and sources involved with the process had been pleased with its progress leading up to Tabak's sudden reversal. After Collins publicly floated the concept in late 2021, the agency took some public steps while defining the project, including holding a workshop in May 2022, keynoted by Collins.

Later that year, the project's presented the concept to the agency's Council of Councils, a group of outside researchers who feedback on policy initiatives and projects. It got a warm reception.

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Edith Mitchell, an oncologist at Thomas Jefferson University Hospital in Philadelphia, said the agency had a “major task, but one that is much needed, one that is innovative.” The council gave the proposal a 19-1 seal of approval.

Researchers were happy. “As far as I was concerned, this program had been funded, accepted, and approved,” Schillinger said. (The agency says that it is “not unusual” for programs not to move forward but that it does not track how frequently programs get affirmative votes from the council and later don't move forward.)

That smooth sailing continued into the new year. In March, the program was mentioned in the NIH budget as one of the agency's potential projects for the coming years. Then, say sources in NIH and elsewhere in government, came Tabak's sudden in April, which was not communicated to some researchers until June.

Early that month, Schillinger said, he received a call from an NIH official saying, “The program has been killed.” Program officers were reaching out to academics who had made prior inquiries about the initiative and potential research efforts that could garner grants. Schillinger said researchers were told, “You're not getting an email” from the agency.

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A former White House staffer and two current NIH officials — who were granted anonymity because they didn't have permission to speak on sensitive matters — said the decision, which came as researchers and agency officials were preparing to open grant applications in the last quarter of the year, was made by Tabak. KFF Health asked Tabak for an interview but instead got an answer from agency spokespeople.

The agency disputes any final decision about this research funding that has been made. Spokesperson Amanda Fine told KFF Health News the project was “still in concept phase” and is “being paused to consider its scope and aims.”

But the agency lists the health communications proposal on the “former programs” part of its website, and sources inside and outside of government disagree with this company line. They point to political fears on NIH's part as driving the change, which reflects the growing political controversy over studying anything related to misinformation, even though the proposal was set up to examine health communications broadly, not solely misinformation.

A hint of this reasoning is contained in the rest of Fine's statement, which notes the “regulatory and legal landscape around communication platforms.” When pressed, the agency later cited unnamed “lawsuits.”

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That's likely a reference to the Louisiana case, which was decided weeks after the agency decided to pause or kill the Common Fund initiative.

Fine later offered a new explanation: budgetary concerns. “We must also balance priorities in view of the current budgetary projections for fiscal years 2024 and 2025,” she wrote.

That explanation wasn't part of a June 6 note on the program page, and one NIH official confirmed it wasn't part of previous discussions. When pressed further about the agency's budgetary position — which analysts with TD Cowen's Washington Research Group think will be flat — spokesperson Emily Ritter said, “The NIH does not have a budget projection.”

By: Darius Tahir
Title: The NIH Ices a Research Project. Is It Self-Censorship?
Sourced From: kffhealthnews.org/news/article/the-nih-ices-a-research-project-is-it-self-censorship/
Published Date: Mon, 07 Aug 2023 09:00:00 +0000

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The Lure of Specialty Medicine Pulls Nurse Practitioners From Primary Care

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Michelle Andrews
Fri, 17 May 2024 09:00:00 +0000

For many patients, seeing a nurse practitioner has become a routine part of primary care, in which these “NPs” often perform the same tasks that patients have relied on doctors for.

But NPs in specialty care? That's not routine, at least not yet. Increasingly, though, nurse practitioners and physician assistants are joining cardiology, dermatology, and other specialty practices, broadening their skills and increasing their income.

This worries some people who track the workforce, because current trends suggest primary care, which has counted on nurse practitioners to backstop physician shortages, soon might not be able to rely on them to the same extent.

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“They're succumbing to the same challenges that we have with physicians,” said Atul Grover, executive director of the Research and Action Institute at the Association of American Medical Colleges. The rates NPs can command in a specialty practice “are quite a bit higher” than practice salaries in primary care, he said.

When nurse practitioner programs began to proliferate in the 1970s, “at first it looked great, producing all these nurse practitioners that go to work with primary care physicians,” said Yalda Jabbarpour, director of the American Academy of Physicians' Robert Graham Center for Policy Studies. “But now only 30% are going into primary care.”

Jabbarpour was referring to the 2024 primary care scorecard by the Milbank Memorial Fund, which found that from 2016 to 2021 the proportion of nurse practitioners who worked in primary care practices hovered between 32% and 34%, even though their numbers grew rapidly. The proportion of physician assistants, also known as physician associates, in primary care ranged from 27% to 30%, the study found.

Both nurse practitioners and physician assistants are advanced practice clinicians who, in addition to graduate degrees, must complete distinct education, , and certification steps. NPs can practice without a doctor's supervision in more than two dozen states, while PAs have similar independence in only a handful of states.

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About 88% of nurse practitioners are certified in an area of primary care, according to the American Association of Nurse Practitioners. But it is difficult to track exactly how many work in primary care or in specialty practices. Unlike physicians, they're generally not required to be endorsed by a national standard-setting body to practice in specialties like oncology or cardiology, for example. The AANP declined to answer questions about its annual workforce survey or the extent to which primary care NPs are moving toward specialties.

Though data tracking the change is sparse, specialty practices are adding these advanced practice clinicians at almost the same rate as primary care practices, according to frequently cited research published in 2018.

The clearest evidence of the shift: From 2008 to 2016, there was a 22% increase in the number of specialty practices that employed nurse practitioners and physician assistants, according to that study. The increase in the number of primary care practices that employed these professionals was 24%.

Once more, the most recent projections by the Association of American Medical Colleges predict a dearth of at least 20,200 primary care physicians by 2036. There will also be a shortfall of non-primary care specialists, a deficiency of at least 10,100 surgical physicians and up to 25,000 physicians in other specialties.

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When it to the actual work performed, the lines between primary and specialty care are often blurred, said Candice Chen, associate professor of health policy and management at George Washington University.

“You might be a nurse practitioner working in a gastroenterology clinic or cardiology clinic, but the scope of what you do is starting to overlap with primary care,” she said.

Nurse practitioners' salaries vary widely by location, type of facility, and experience. Still, according to data from health care recruiter AMN Healthcare Physician Solutions, formerly known as Merritt Hawkins, the total annual average starting compensation, including signing bonus, for nurse practitioners and physician assistants in specialty practice was $172,544 in the year that ended March 31, slightly higher than the $166,544 for those in primary care.

According to forecasts from the federal Bureau of Labor Statistics, nurse practitioner will increase faster than jobs in almost any other occupation in the decade leading up to 2032, growing by 123,600 jobs or 45%. (Wind turbine service technician is the only other occupation projected to grow as fast.) The growth rate for physician assistants is also much faster than average, at 27%. There are more than twice as many nurse practitioners as physician assistants, however: 323,900 versus 148,000, in 2022.

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To Grover, of the AAMC, numbers like this signal that there will probably be enough NPs, PAs, and physicians to meet primary care needs. At the same time, “expect more NPs and PAs to also flow out into other specialties,” he said.

When Pamela Ograbisz started working as a registered nurse 27 years ago, she worked in a cardiothoracic intensive care unit. After she became a family nurse practitioner a few years later, she found a job with a similar specialty practice, which trained her to take on a bigger role, first running their outpatient clinic, then working on the floor, and later in the intensive care unit.

If nurse practitioners want to specialize, often “the doctors mentor them just like they would with a physician residency,” said Ograbisz, now vice president of clinical operations at temporary placement recruiter LocumTenens.com.

If physician assistants want to specialize, they also can do so through mentoring, or they can “certificates of added qualifications” in 10 specialties to demonstrate their expertise. Most employers don't “encourage or require” these certificates, however, said Jennifer Orozco, chief medical officer at the American Academy of Physician Associates.

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There are a number of training programs for family nurse practitioners who want to develop skills in other .

Raina Hoebelheinrich, 40, a family nurse practitioner at a regional medical center in Yankton, South Dakota, recently enrolled in a three-semester post-master's endocrinology training program at Mount Marty University. She lives on a farm in nearby northeastern Nebraska with her husband and five sons.

Hoebelheinrich's new skills could be helpful in her current hospital job, in which she sees a lot of patients with acute diabetes, or in a clinic setting like the one in Sioux Falls, South Dakota, where she is doing her clinical endocrinology training.

Lack of access to endocrinology care in rural areas is a real problem, and many people may travel hundreds of miles to see a specialist.

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“There aren't a lot of options,” she said.

——————————
By: Michelle Andrews
Title: The Lure of Specialty Medicine Pulls Nurse Practitioners From Primary Care
Sourced From: kffhealthnews.org//article/nurse-practitioners-trend-primary-care-specialties/
Published Date: Fri, 17 May 2024 09:00:00 +0000

Did you miss our previous article…
https://www.biloxinewsevents.com/clean-needles-save-lives-in-some-states-they-might-not-be-legal/

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Clean Needles Save Lives. In Some States, They Might Not Be Legal.

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Ed Mahon, PA and Sarah Boden, WESA
Fri, 17 May 2024 09:00:00 +0000

Kim Botteicher hardly thinks of herself as a criminal.

On the main floor of a former Catholic church in Bolivar, Pennsylvania, Botteicher runs a flower shop and cafe.

In the former church's basement, she also operates a nonprofit organization focused on helping people caught up in the drug epidemic get back on their feet.

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The nonprofit, FAVOR ~ Western PA, sits in a rural pocket of the Allegheny Mountains east of Pittsburgh. Her organization's home county of Westmoreland has seen roughly 100 or more drug overdose deaths each year for the past several years, the majority involving fentanyl.

Thousands more residents in the region have been touched by the scourge of addiction, which is where Botteicher comes in.

She helps people find housing, , and health care, and works with families by running support groups and explaining that substance use disorder is a disease, not a moral failing.

But she has also talked publicly about how she has made sterile syringes available to people who use .

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“When that person comes in the door,” she said, “if they are covered with abscesses because they have been using needles that are dirty, or they've been sharing needles — maybe they've got hep C — we see that as, ‘OK, this is our first step.'”

Studies have identified public health benefits associated with syringe exchange services. The Centers for Disease Control and Prevention says these programs reduce HIV and hepatitis C infections, and that new users of the programs are more likely to enter drug treatment and more likely to stop using drugs than nonparticipants.

This harm-reduction strategy is supported by leading health groups, such as the American Medical Association, the World Health Organization, and the International AIDS Society.

But providing clean syringes could put Botteicher in legal danger. Under Pennsylvania law, it's a misdemeanor to distribute drug paraphernalia. The state's definition includes hypodermic syringes, needles, and other objects used for injecting banned drugs. Pennsylvania is one of 12 states that do not implicitly or explicitly authorize syringe services programs through statute or regulation, according to a 2023 analysis. A few of those states, but not Pennsylvania, either don't have a drug paraphernalia law or don't include syringes in it.

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Those working on the front lines of the opioid epidemic, like Botteicher, say a reexamination of Pennsylvania's law is long overdue.

There's an urgency to the issue as well: Billions of dollars have begun flowing into Pennsylvania and other states from legal settlements with companies over their role in the opioid epidemic, and syringe services are among the eligible interventions that could be supported by that money.

The opioid settlements reached between drug companies and distributors and a coalition of state attorneys general included a list of recommendations for spending the money. Expanding syringe services is listed as one of the core strategies.

But in Pennsylvania, where 5,158 people died from a drug overdose in 2022, the state's drug paraphernalia law stands in the way.

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Concerns over Botteicher's work with syringe services recently led Westmoreland County officials to cancel an allocation of $150,000 in opioid settlement funds they had previously approved for her organization. County Commissioner Douglas Chew defended the decision by saying the county “is very risk averse.”

Botteicher said her organization had planned to use the money to hire additional recovery specialists, not on syringes. Supporters of syringe services point to the cancellation of funding as evidence of the need to change state law, especially given the recommendations of settlement documents.

“It's just a huge inconsistency,” said Zoe Soslow, who leads overdose prevention work in Pennsylvania for the public health organization Vital Strategies. “It's causing a lot of confusion.”

Though sterile syringes can be purchased from pharmacies without a prescription, handing out free ones to make drug use safer is generally considered illegal — or at least in a legal gray area — in most of the state. In Pennsylvania's two largest , Philadelphia and Pittsburgh, officials have used local health powers to provide legal protection to people who operate syringe services programs.

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Even so, in Philadelphia, Mayor Cherelle Parker, who took office in January, has made it clear she opposes using opioid settlement money, or any city funds, to pay for the distribution of clean needles, The Philadelphia Inquirer has reported. Parker's position signals a major shift in that city's approach to the opioid epidemic.

On the other side of the state, opioid settlement funds have had a big effect for Prevention Point Pittsburgh, a harm reduction organization. Allegheny County reported spending or committing $325,000 in settlement money as of the end of last year to support the organization's work with sterile syringes and other supplies for safer drug use.

“It was absolutely incredible to not have to fundraise every single dollar for the supplies that go out,” said Prevention Point's executive director, Aaron Arnold. “It takes a lot of energy. It pulls away from actual delivery of services when you're constantly to find out, ‘Do we have enough money to even purchase the supplies that we want to distribute?'”

In parts of Pennsylvania that lack these legal protections, people sometimes operate underground syringe programs.

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The Pennsylvania law banning drug paraphernalia was never intended to apply to syringe services, according to Scott Burris, director of the Center for Public Health Law Research at Temple University. But there have not been court cases in Pennsylvania to clarify the issue, and the failure of the legislature to act creates a chilling effect, he said.

Carla Sofronski, executive director of the Pennsylvania Harm Reduction Network, said she was not aware of anyone having faced criminal charges for operating syringe services in the state, but she noted the threat hangs over people who do and that they are taking a “great risk.”

In 2016, the CDC flagged three Pennsylvania counties — Cambria, Crawford, and Luzerne — among 220 counties nationwide in an assessment of communities potentially vulnerable to the rapid spread of HIV and to new or continuing high rates of hepatitis C infections among people who inject drugs.

Kate Favata, a resident of Luzerne County, said she started using heroin in her late and wouldn't be alive if it weren't for the support and community she found at a syringe services program in Philadelphia.

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“It kind of just made me feel like I was in a safe space. And I don't really know if there was like a come-to-God moment or come-to-Jesus moment,” she said. “I just wanted better.”

Favata is now in long-term recovery and works for a medication-assisted treatment program.

At clinics in Cambria and Somerset Counties, Highlands Health provides free or low-cost medical care. Despite the legal risk, the organization has operated a syringe program for several years, while also testing for infectious diseases, distributing overdose reversal medication, and offering recovery options.

Rosalie Danchanko, Highlands Health's executive director, said she hopes opioid settlement money can eventually support her organization.

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“Why shouldn't that wealth be spread around for all organizations that are working with people affected by the opioid problem?” she asked.

In February, legislation to legalize syringe services in Pennsylvania was approved by a committee and has moved forward. The administration of Gov. Josh Shapiro, a Democrat, supports the legislation. But it faces an uncertain future in the full legislature, in which Democrats have a narrow majority in the House and Republicans control the Senate.

One of the bill's lead sponsors, state Rep. Jim Struzzi, hasn't always supported syringe services. But the Republican from western Pennsylvania said that since his brother died from a drug overdose in 2014, he has come to better understand the nature of addiction.

In the committee vote, nearly all of Struzzi's Republican colleagues opposed the bill. State Rep. Paul Schemel said authorizing the “very instrumentality of abuse” crossed a line for him and “would be enabling an evil.”

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After the vote, Struzzi said he wanted to build more bipartisan support. He noted that some of his own skepticism about the programs eased only after he Prevention Point Pittsburgh and saw how workers do more than just hand out syringes. These types of programs connect people to resources — overdose reversal medication, wound care, substance use treatment — that can save lives and lead to recovery.

“A lot of these people are … desperate. They're alone. They're afraid. And these programs bring them into someone who cares,” Struzzi said. “And that, to me, is a step in the right direction.”

At her nonprofit in western Pennsylvania, Botteicher is hoping lawmakers take action.

“If it's something that's going to help someone, then why is it illegal?” she said. “It just doesn't make any sense to me.”

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This story was co-reported by WESA Public Radio and Spotlight PA, an independent, nonpartisan, and nonprofit newsroom producing investigative and public-service journalism that holds power to account and drives positive change in Pennsylvania.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

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By: Ed Mahon, Spotlight PA and Sarah Boden, WESA
Title: Clean Needles Save Lives. In Some States, They Might Not Be Legal.
Sourced From: kffhealthnews.org/news/article/clean-needles-syringe-services-programs-legal-gray-area-risk-pennsylvania/
Published Date: Fri, 17 May 2024 09:00:00 +0000

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Watch: John Oliver Dishes on KFF Health News’ Opioid Settlements Series

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Fri, 17 May 2024 09:00:00 +0000

Opioid manufacturers, distributors, and retailers are paying tens of billions of dollars in restitution to settle lawsuits related to their role in the nation's overdose epidemic. A recent of “Last Tonight With John Oliver” examined how that money is being spent by and local governments across the United States.

The segment from the KFF Health “Payback: Tracking the Opioid Settlement Cash.” You can learn more about the issue and read our collection of articles by Aneri Pattani here.

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Title: Watch: John Oliver Dishes on KFF News' Opioid Settlements Series
Sourced From: kffhealthnews.org/news/article/watch-john-oliver-kff-health-news-payback-opioid-settlements-series/
Published Date: Fri, 17 May 2024 09:00:00 +0000

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