Caring for the littlest long-haulers

Feb 23, 2023

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By Daniel Payne and Krista Mahr

With Katherine Ellen Foley and Ben Leonard

Driving the Day

Alyssa Carpenter, 2, and her sister Audrey Carpenter, 5, play with toy horses on the floor

Clinics that treat children with long Covid have long waiting lists. | Carolyn Kaster/AP Photo

THE KIDS AREN’T ALRIGHT — The CDC will host a Clinician Outreach and Communication Activity call today for practitioners around the country to learn more about diagnosing and treating children with long Covid. Though it’s unclear how many kids suffer from the condition, multidisciplinary clinics nationwide that treat long Covid in children still have long waiting lists.

Krista spoke with Amanda Morrow, co-director of the pediatric post-Covid-19 clinic at Kennedy Krieger Institute, about long Covid in kids. She will present new guidance on the call to help primary care physicians recognize and provide early treatment for the condition.

The interview has been edited for length and clarity.

What is happening with kids and long Covid right now? What are you seeing in your practice?

Unfortunately, this doesn’t seem to be going away. There is a group of children who will develop prolonged symptoms after Covid infection. We’ve even seen some children who have developed long COVID after their second or third bout of acute Covid. We’ve learned a lot, but there's still so much more that we need to discover about long Covid, about how it affects kids, and about the best treatment option.

Is it still hard for kids to get care for long Covid?

Yes. Our pediatricians are doing a great job trying to start helping these kids, and some of them are improving before they end up having to come to a clinic like ours, which is so specialized. But there’s still a lack of resources for some children who have a variety of symptoms across multiple organ systems. … Some of these kids need a multidisciplinary approach with different providers — therapists, psychologists, social worker support, counselors — to look at patients in a holistic way.

Why does this worry you in the long term?

I really worry about children’s loss of quality of life and normalcy — being able to hang out with their friends, being able to go to school, being able to participate in their extracurricular activities. I want them to be able to succeed and be able to get back to where they were before they got sick.

Do you think the federal government is doing what it should be doing?

I do think that there have been initiatives, and the federal government is providing additional support for research into this condition. Could there be more? Sure. … I think we all wish that more could be done as soon as possible.

WELCOME TO THURSDAY PULSE, where we recently learned that cocaine bear (soon to be the star of a feature film) isn’t the only animal to get into human substances. From marijuana to McFlurries, animals seem to be partaking in whatever they can, according to an enlightening report from the Times.

Any animal sightings to report? What about health news or tips? Drop us a line at dpayne@politico.com and kmahr@politico.com.

TODAY ON OUR PULSE CHECK PODCAST, host Ruth Reader talks with Megan R. Wilson about the growing calls to enact reforms to pharmaceutical middlemen after years of largely unsuccessful attempts by lawmakers, while reform advocates hope conditions are ripe this year for action. Megan also expounds on the bills introduced so far and how PBMs are fighting back.

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Listen to today’s Pulse Check podcast

At the Agencies

Vaping products are displayed on shelves.

The FDA's Center for Tobacco Products issued its first civil monetary penalties to four vape manufacturers for selling unauthorized e-liquid products. | Spencer Platt/Getty Images

TOBACCO PENALTIES INCOMING — Four e-cigarette manufacturers are the first to get civil monetary penalties from the FDA’s Center for Tobacco Products for selling unauthorized products, Katherine reports.

The agency said it sent civil monetary penalties Tuesday to four vape manufacturers: VapEscape, Great American Vapes, the Vapor Corner and 13 Vapor. According to the FDA, the companies continued to sell e-liquid of vapes without marketing orders, even after receiving warning letters that their products were illegal. In the last two years, the agency has sent out 550 warning letters to companies, and most have pulled their products from the market as a result.

For tobacco manufacturers — including e-cigarette manufacturers — to legally sell products, they must demonstrate to the FDA that their products are appropriate for the protection of public health, which means they're potentially beneficial for adult smokers and don't appeal to minors. If the FDA issues marketing orders for various products, they can be displayed on store shelves; so far, the agency has authorized only 23 e-liquid products and has denied millions more.

HEALTH TECH

REMOTE PATIENT-MONITORING CONCERNS — Telehealth advocacy groups the Alliance for Connected Care and the American Telemedicine Association are concerned that a meeting next week of Medicare Administrative Contractors, which process claims, isn’t considering enough evidence on the benefits of remote patient monitoring, Ben reports.

“Given the enormous power the Local Coverage Decision (LCD) process has over access to services and technologies by Medicare payments, we urge you to consider our recommendations,” the groups said in a letter to Novitas Solutions, which is leading the meeting of Medicare Administrative Contractors, which process claims. “We are concerned that advice rendered by the CAC in this instance will not be the result of a full scientific inquiry, nor will it help ensure unbiased or contemporary consideration of state of the art technology and science.”

The groups said the meeting’s bibliography left out “at least 45 credible studies.” Nearly 100 health care groups, including the American Medical Association, previously raised concerns about the meeting’s lack of transparency.

Novitas Solutions didn’t directly address the concerns in a statement to POLITICO, saying that “information and advice from the experts will allow us to determine if an LCD is or is not supported.”

Providers

A PLAN TO END BAN ON PHYSICIAN-OWNED HOSPITALS — Legislation that would end the Affordable Care Act’s ban on new physician-owned hospitals has been introduced in both chambers of Congress, a policy proponents say will increase competition in the industry.

The bills, supported mainly by Republicans, would be a win for physician groups that have been eyeing the issue for some time.

Existing fears of physician-owned hospitals driving up health care costs and prioritizing the most profitable patients (which helped pass the ban) have been countered by the theory that lifting the ban would push back against hospital consolidation — believed to be a major driver of rising costs.

“As a doctor, getting the best care to patients is always the priority,” Sen. Bill Cassidy (R-La.) said in a statement announcing the legislation. “This bill reduces the amount of government red tape separating patients from the care they need, especially in rural communities.”

WORK STOPPAGES CREPT UP IN 2022 — Health and social assistance sectors had a significant number of workers — about 36,800 — involved in major stoppages in 2022, POLITICO’s Nick Niedzwiadek reports.

It’s part of the larger trend of major stoppages ticking up last year, according to Labor Department data released Wednesday.

Health workers began 2022 striking more than at any other point in the pandemic, with some saying frustrations from recent years were finally boiling over — and adding pressure to workforce shortages in the sector.

Those shortages remain a key concern for providers, with lawmakers looking to address the issue this Congress.

Names in the News

FIRST IN PULSE — Nomi Health, a direct health care system, is creating the Nomi Health Charitable Foundation, which will focus on health equity, literacy, education and social determinants.

Rachel Weintraub will become the first executive director for the Coalition for Sensible Safeguards, a group that pushes for regulations to ensure quality of life and economic security.

Jed Gorlin has been named chief medical officer of America’s Blood Centers.

What We're Reading

Kaiser Health News reports on the bitter battle over the “orphan drug” program.

The Wall Street Journal reports the surge in Ozempic demand is leaving diabetes patients with shortages.

The United Nations released a report finding a woman dies every two minutes during pregnancy or childbirth.

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