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Stat News – Lawmakers and a Pelosi aide turn lobbyist to push for new health agency’s independence

Stat News – Lawmakers and a Pelosi aide turn lobbyist to push for new health agency’s independence

WASHINGTON — Health secretary Xavier Becerra is suddenly the target of a frenzied lobbying campaign aimed at ensuring the independence of ARPA-H, the new high-stakes research agency that President Biden has said will “end cancer as we know it.”

But in a strange turn, many of the lobbyists are actually lawmakers. In recent days, Becerra has met with members of Congress, and a top aide to House Speaker Nancy Pelosi — a far more powerful set than the cohort of patient advocates or pharma and hospital representatives who usually seek meetings at the Humphrey building. By and large, their message has been identical: That for the new agency to succeed, it must exist independently of the National Institutes of Health.

The last-minute advocacy effort comes as Becerra faces a Wednesday deadline to determine ARPA-H’s fate. President Biden’s White House has long advocated for the agency to exist as a unit within the National Institutes of Health. So, too, has Francis Collins — the longtime NIH director who retired in December, only to be called back into service last month as the new White House science adviser.

Many research experts, however, warn that the entrenched bureaucracy at the NIH, the government’s $42 billion biomedical research agency, could doom the ARPA-H experiment before it even begins.

For months, the back-and-forth surrounding the new agency has played out largely behind the scenes. But with the clock ticking, many of those most concerned have begun to make their voices louder.

On Friday, Reps. Rosa DeLauro (D-Conn.) and Anna Eshoo (D-Calif.) urged Becerra to leave ARPA-H independent. DeLauro chairs the House Appropriations Committee, and Eshoo chairs the Energy and Commerce health subcommittee.

They were joined, according to four sources familiar with the meeting, by Keith Yamamoto, University of California San Francisco’s vice chancellor for science policy and strategy, and Regina Dugan, who ran the Defense Advanced Research Projects Agency from 2009 to 2012.

“The thing we wanted to emphasize is that the mission and goals of the two agencies are different,” Yamamoto said. “Those cultural differences, those operational differences, are essential, and the best way to ensure that both agencies stay robust is to have them be separate.”

House Speaker Nancy Pelosi has weighed in forcefully, too: She communicated the same message directly to the White House, according to a fifth source, and she sent her top domestic policy aide, Wendell Primus, to back up Eshoo and DeLauro at Friday’s meeting with Becerra.

In a statement, HHS spokesman Bill Hall told STAT that Becerra “has heard privately from a number of members of Congress and external stakeholders as he pursues a deliberative approach to a decision on this issue,” but did not provide a timeline for his decision.

It is unclear, however, whether the decision is truly Becerra’s to make. While a recent spending bill delegates the task to him explicitly, it would be highly unusual for a cabinet secretary to explicitly defy the president who appointed him.

Many believe that Biden is likely to rely on his science advisers before instructing Becerra which decision he should make. An administration spokesman did not respond to STAT’s request for comment about how forcefully Collins has weighed in. A spokeswoman for the White House Office of Science and Technology Policy said only that Alondra Nelson, the office’s acting director, had “complete confidence in Secretary Becerra’s judgment.”

The many scientists pushing for ARPA-H’s independence argue the NIH’s risk-averse culture could prevent it from achieving the same type of breakthroughs that its peer agencies are famous for.

“We’re looking at the long game here,” said Michael Stebbins, a geneticist and former Obama administration science official who co-authored the original white paper outlining the concept of an ARPA-like agency for health care. “And the long game is that we need this agency to function like DARPA, not like the NIH.”

Stebbins is far from the only prominent researcher who has forcefully weighed in on where ARPA-H should be located. His co-author Geoffrey Ling, a former Army doctor who once led DARPA’s biotechnology office, has also railed against the prospect of housing it at NIH.

Others in their camp include former DARPA director Arati Prabhakar and former Trump administration health official Brett Giroir, who warned at a congressional hearing last month that housing the new agency within NIH would be a “fatal mistake.”

Yamamoto, the UCSF vice chancellor, even argued that doing so would threaten the Biden administration’s ability to recruit a qualified ARPA-H director.

“If we told them, ‘Oh, by the way, you’re reporting to the NIH director,’ I just don’t think we’ll be able to find somebody who has the vision and the drive to set out this thing and manage it in the way it needs to be managed,” he said.

Indeed, while numerous scientists affiliated with the federal government’s various ARPA agencies — the acronym stands for advanced research projects authority — have publicly advocated for ARPA-H to be independent, none has argued for it to exist as a unit of the NIH.

The agencies, many argue, usually function in a fundamentally different way: NIH awards grants, while ARPA agencies award contracts. NIH doesn’t set accountability benchmarks for its researchers’ projects, while ARPA agencies set strict mileposts and don’t hesitate to pull the plug on projects that aren’t moving forward. And while some NIH institute directors have served for decades, ARPA agencies’ program managers typically serve time-limited terms.

Some leading science policy advocates, however, have argued the opposite:

“We all respect and acknowledge that [NIH’s] culture is different,” said Ellen Sigal, the founder and chairperson of the D.C. advocacy group Friends of Cancer Research. “It’s going to be hard to take decades of that culture and change it — but we believe with the commitment of all in our community, it’s possible.”

Others, too, have argued that time is of the essence, and that attempting to stand up a brand-new agency, instead of simply adding a unit to NIH, could cause costly delays.

“NIH is the worst possible place to put ARPA-H except for everywhere else in the government,” said Sudip Parikh, the CEO of the American Association for the Advancement of Science. “HHS doesn’t have the infrastructure to immediately start hiring. It doesn’t have the infrastructure to immediately start doing contracts.”

He continued: “You need that infrastructure — otherwise it’s going to take us a year and a half, two years, just to get the first contract out the door.”