Lawmakers want data from public health officials on the prevalence of long Covid, but the Centers for Disease Control and Prevention won’t have it for another two years.

Reps. Don Beyer (D-Va.) and Ayanna Pressley (D-Mass.) asked the CDC in a January letter to publicly release their findings on how many people have long Covid and to break that data down by race, ethnicity, age, gender, previous disability, and other demographic characteristics.

Aaron Fritschner, a spokesman for Beyer, said his office got a briefing from the agency in response and were told the CDC “would not internally have a dataset from which they could publicly post disaggregated data for two years.” The lawmakers’ aides weren’t provided any data at all.

Though private studies have tried to nail down how many people actually have long Covid and how many more could get it in the future, lawmakers say numbers from a trusted source like the CDC could help convince Congress to pass more funding for research and new aid for support services.

Long Covid is a catch-all term for the constellation of health conditions caused by Covid-19, some of which are so severe they’ve left people unable to work. There’s a real concern the pandemic will leave a whole population of people who can’t work. The Government Accountability Office said in a March 2 report that this could affect the broader U.S. economy through decreased labor participation and an increased need for use of Social Security disability insurance or other publicly subsidized insurance.

By some estimates, there could be anywhere from 7.7 million to 23 million people who have developed these new, recurring, or ongoing health conditions like debilitating fatigue, difficulty breathing, and cognitive issues, since their initial Covid-19 infection, the GAO report said.

Bills have been introduced in the House and Senate to appropriate more money to research and to educate doctors about long Covid. Beyer proposed $93 million in his Covid-19 Long Haulers Act (H.R. 2754). In the Senate, Sen. Tim Kaine (D-Va.), who has mild long Covid symptoms himself, asked for $155 million in the CARE for Long Covid Act (S. 3726) in 2023, another $110 million in both 2024 and 2025, and $50 million in both 2026 and 2027. Two provisions of the bill were included in a legislative package (S. 3799) that advanced out of the Senate Health, Education, Labor, and Pensions Committee last week. One directs the Health and Human Services Department to identify and develop tools and strategies to care for people with long Covid. The other requires annual reports to Congress on research. Read more from Lydia Wheeler.

The Coronavirus Pandemic

FDA Advisers to Consider Extra Covid Boosters as Masks Come Off: U.S. government advisers will meet early next month to discuss the use of additional Covid-19 booster shots as states and companies lower prevention safeguards such as masking and work at home. The Vaccines and Related Biological Products Advisory Committee will meet April 6 to discuss the use of future booster doses to address current and potential future virus strains of concern, according to a statement Monday. The panel advises the U.S. Food and Drug Administration on immunizations.

The agency also aims to develop a framework for determining when the composition of vaccines ought to be changed to address specific strains. Representatives from the Centers for Disease Control and Prevention and the National Institutes of Health will also participate. Pfizer and Moderna have each asked U.S. regulators to clear additional boosters as the protection provided by the first three shots wanes, but the FDA said that no vote is planned at the advisory meeting and there will be no discussion of particular applications. Read more from Fiona Rutherford.

Federal Vaccine Law Trumps DC Law Letting Minors Bypass Parents: The city of Washington, D.C., is blocked from enforcing a law allowing “mature” minors who are 11 or older to receive a Covid-19 or other vaccine without their parents’ knowledge or consent because the National Childhood Vaccine Injury Act likely supersedes it, a federal court said. The NCVIA imposes duties on health-care providers who administer vaccines that contradict the duties placed on them by the D.C. law, the U.S. District Court for the District of Columbia said. The federal law thus likely takes precedence under the theory of “conflict preemption,” the court said. Read more from Mary Anne Pazanowski.

Montana’s Anti-Vax Law Mostly Blocked in Health Providers’ Suit: A Montana law that prohibits health-care providers from denying goods, services, or employment based on a person’s lack of a Covid-19 vaccination is blocked, after a federal court determined that a federal regulation likely preempts it. It’s impossible for a health-care facility to comply with both the Montana law and a Centers for Medicare and Medicaid Services interim final rule that requires facilities to demonstrate that all staff have received a Covid-19 vaccination or an exemption, the U.S. District Court for the District of Montana said. Read more from mary Anne Pazanowski.

• Meanwhile, Virginia’s first-in-the-nation rule protecting workers from Covid-19 infections could be revoked within the week following a vote Monday by the state’s Safety and Health Codes Board. The board voted 6-0 that Covid-19 no longer posed a “grave danger” to workers and recommended that Gov. Glenn Youngkin (R) approve withdrawing the standard. Read more from Bruce Rolfsen.

Twitter Wins Dismissal on Covid Disinformation Suit: Twitter defeated a lawsuit alleging it violated a user’s free speech rights by ending her account for violating its Covid-19 disinformation policy because the user didn’t allege Twitter engaged in any conduct fairly attributable to the government, a federal court in California said. Read more from Mary Anne Pazanowski.

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What Else to Know

Biosimilar Maker Input Sought on FDA’s Enhanced Review Program: The FDA wants feedback on whether a program that coordinates early communication with product sponsors is effectively expediting approvals for cheaper alternatives to brand-name biologics. The Program for Enhanced Review Transparency and Communication was established in 2017 as part of the Food and Drug Administration’s user fee agreements with the prescription drug and biosimilar industries. The agency is asking for comment on the program as Congress reviews the latest round of user fee deals. Read more from Celine Castronuovo.

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To contact the reporters on this story: Michaela Ross in Washington at mross@bgov.com

To contact the editor responsible for this story: Giuseppe Macri at gmacri@bgov.com