An airing of grievances on long Covid

Jan 19, 2024

Presented by the Coalition to Protect America's Health Care

With Megan Wilson and Megan Messerly

PATIENTS WANT MORE LONG COVID RESEARCH — Long COVID patients and doctors who treat them told senators at a HELP Committee hearing on Thursday they want more funding dedicated to studying the condition, Chelsea reports.

Some members of the panel said they weren’t impressed with how the NIH has spent $1.15 billion in past appropriations and favor new approaches.

“They're focused on risk factors and root causes as opposed to diagnosis and treatment,” complained Sen. Roger Marshall (R-Kan.) of the NIH’s Recover Initiative, which patients and providers have criticized for using most of its money for observational research instead of clinical trials.

Marshall suggested that further funding should go to the Biomedical Advanced Research and Development Authority, an HHS agency that appeals to him because it’s “more focused on working with the private sector.”

Why it matters: The critique comes as an estimated 6 percent of U.S. adults suffer from long Covid, which can cause mildly annoying symptoms but also debilitating ones. There is no cure and researchers are only beginning to understand why and how people are affected.

Doctors who treat long Covid patients told HELP Committee members that they support observational studies, but want to see clinical trials accelerated to find out what treatments might work.

Last July, the NIH RECOVER initiative opened its first four clinical trials to test potential treatments. HHS also launched the Office of Long COVID Research and Practice, led by Assistant Secretary Rachel Levine, that month. In September, HHS awarded $1 million grants to fund nine long Covid clinics for five years.

Committee Chair Bernie Sanders (I-Vt.) did not invite administration officials to participate in the hearing and HHS and NIH did not respond to requests for comment.

WELCOME TO FRIDAY PULSE. Your favorite neighborhood bar probably isn’t actually in your neighborhood, according to researchers from Columbia University. People are more likely to visit a liquor store near where they live, but travel further to hit the bar. Send your tips, scoops and feedback to ccirruzzo@politico.com and bleonard@politico.com and follow along @ChelseaCirruzzo and @_BenLeonard_.

A message from the Coalition to Protect America's Health Care:

Medicare Cuts Threaten The Hospital Care Patients Rely On. https://actnow.protecthealthcare.org/a/no-cuts-to-care

Congress

SANDERS WARNS DRUG COMPANY TITANS — Senate HELP Committee Chair Bernie Sanders (I-Vt.) is threatening to subpoena the CEOs of two major drug companies about their pricing strategies, POLITICO’s Lauren Gardner reports.

Sanders will need a majority of his panel to go along. He said he’d call a vote on the subpoenas for Johnson & Johnson CEO Joaquin Duato and Merck CEO Robert Davis by the end of the month.

If it happens, it’ll be the first time the committee has subpoenaed anyone in more than 40 years.

Bristol Myers Squibb CEO Chris Boerner has already agreed to testify before the committee alongside at least one other unnamed CEO, the committee said.

The three pharmaceutical leaders were invited to testify by Sanders and the committee’s Democrats in November on why the U.S. pays more for prescription drugs than people in other developed countries.

All three companies make drugs that CMS has selected for the first price negotiations under Medicare and have sued the government in protest.

Drugmakers respond: A J&J spokesperson said the company has "continued to engage" with the panel on its proposed hearing but has expressed concern with how it's "currently planned." A lawyer for J&J wrote in a letter to Sanders last week that the company offered to send a lower-level executive and has concerns that the hearing is “intended as retribution” for the lawsuits.

A Merck spokesperson said a lawyer for its company sent a similar letter to Sanders.

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FAT JOE ON A MISSION — Nothing can stop Fat Joe; he’s gone all the way up — on Capitol Hill, that is.

Megan Wilson sat down with the rapper, whose real name is Joseph Antonio Cartagena. He's become the face of Power to the Patients, a nonprofit co-founded by philanthropist Cynthia Fisher that’s pushing for more transparency around health care prices.

He’s lobbied Congress over the past few years on strengthening disclosure rules for hospitals and insurers, which has bipartisan support.

“I get the job done. I don’t lose,” he said. “If we make enough noise, people are going to realize what’s being done to them.”

While in Washington last week, Fat Joe met with House and Senate leaders, including House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-Wash.), who’s trying to get bipartisan health transparency legislation into a government funding deal this winter.

“Fat Joe said it best: ‘It’s an idea whose time has come,’” Rodgers told Ben in a separate interview. “We’ve built good momentum.”

But at the outset of his advocacy journey, Fat Joe said, no one in Washington would meet with him — except Kentucky Republican Brett Guthrie, who leads a House health subcommittee. The following year, Fat Joe had 40 meetings with congressional offices and officials, and last year, he said, he had about 80.

The question many people ask when hearing he’s engaged on the issue is: Why?

“Sometimes they gotta hear it from the most not-normal person,” he said.

FIRST IN PULSE: TELEHEALTH PUSH — Leading lawmakers on virtual care policy wrote to HHS Friday, pushing the agency to prioritize telehealth and work with Congress to make pandemic-era expanded telehealth access permanent.

Sen. Brian Schatz (D-Hawaii) led a letter along with Sens. Roger Wicker (R-Miss.), Ben Cardin (D-Md.), John Thune (R-S.D.) and Mark Warner (D-Va.), among others, calling on HHS to provide “timely technical assistance and data-sharing,” and to address potential implementation questions.

Many public emergency telehealth rules, including in the Medicare program, expire at the end of this year. Schatz is leading the effort to make expanded Medicare telehealth access permanent.

A message from the Coalition to Protect America's Health Care:

Medicaid

THE SOUTH SOFTENS ON MEDICAID EXPANSION — Republican House speakers in Alabama, Georgia and Mississippi have in the past two weeks voiced some degree of openness to expanding Medicaid to cover more low-income adults — a sea change from many conservatives’ yearslong opposition, Megan Messerly reports.

In Alabama, Speaker Nathaniel Ledbetter said that a “private-public partnership” to expand coverage “makes a lot of sense.” In Georgia, Speaker Jon Burns said he’s “encouraged” that lawmakers “are looking at the facts that surround expansion.” And in Mississippi, new Speaker Jason White lamented that lawmakers have never “fully vetted and looked at the Medicaid expansion population.”

They join Wyoming Speaker Albert Sommers, also a Republican, who voted in favor of a bill to expand Medicaid that died in the state Senate last year.

“I had always voted against Medicaid expansion until the last time. I felt that the numbers, the hit to the state of Wyoming was the most manageable it had ever been,” Sommers said in a recent legislative briefing, according to audio obtained by POLITICO.

Ten states have yet to expand coverage to all eligible low-income adults under the Affordable Care Act, but the House speakers’ statements reveal how GOP opposition has softened.

Still, other states remain dead-set against expansion. Republican leaders in Kansas continue to balk at a proposal from Democratic Gov. Laura Kelly that includes work requirements in an effort to woo conservatives. And the situation is similar in at least one chamber in Wyoming, where conservatives have blocked expansion legislation from advancing.

A message from the Coalition to Protect America's Health Care:

Hospitals provide critical services for patients who are sicker, face complicated diseases or who require 24/7 care — regardless of their ability to pay.

While hospitals work to provide care round-the-clock, corporate insurance companies are pushing Congress to enact huge cuts to hospital care. These hospital cuts would hurt rural communities, underserved patients, and seniors on Medicare.

Our hospitals deserve better. Patients deserve better. Seniors deserve better. Get the facts: https://actnow.protecthealthcare.org/a/no-cuts-to-care

Names in the News

Erin O’Malley has joined The Coalition for Trust in Health & Science as its executive director. She previously was senior director for policy at the trade group America’s Essential Hospitals.

Caty Payette is now communications director for Sen. Martin Heinrich (D-N.M.). She was previously the deputy communications director.

WHAT WE'RE READING

POLITICO’s Mari Eccles reports on efforts to develop an Alzheimer’s plan as part of the EU’s health agenda.

NPR reports on disparities in quality of care faced by children of color.

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