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Still no plan for long Covid treatment, doctors say

Presented by PhRMA: Delivered daily by 10 a.m., Pulse examines the latest news in health care politics and policy.
Apr 04, 2023 View in browser
 
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By Krista Mahr and Daniel Payne

Presented by

PhRMA

With Ben Leonard

Driving the Day

A patient lying in a hospital bed

Doctors treating long Covid say the federal response to the condition must "evolve." | Sean Gallup/Getty Images

RINGING THE LONG COVID ALARM — As the country prepares to exit the Covid-19 public health emergency, doctors who’ve been working on the NIH RECOVER study of the long-term effects of Covid say the federal government needs to do more — a whole lot more — to help the millions of Americans affected by the condition.

In a new “call to action,” the principal investigators of the RECOVER’s study hubs around the nation, which have enrolled long Covid adult, pediatric and pregnant patients, are collectively calling for the federal long Covid response to “evolve.”

“Hospital systems and healthcare providers currently lack the tools to address Long COVID,” the investigators write. “There are no current best clinical practices for providing care to individuals with Long COVID, and the national response toward developing such practices lacks coordination.”

That leaves patients who have long Covid — by the CDC’s count, as many as 1 in 5 Americans — to seek out care on their own from primary care physicians who don’t have the time, education or resources to diagnose and treat the complex condition, or at a handful of specialty clinics concentrated in major cities with long waiting lists.

What do they want? The investigators recommend Congress earmark $37.5 million for the Health Resources and Services Agency to fund the next stage of the federal response to long Covid by selecting and financing centers of excellence around the country.

The money would go to hiring practitioners and staff at the centers, maintaining a national treatment directory dashboard, conducting more community outreach about the condition and training emergency medical practitioners, rehab centers and school nurses to care for long Covid patients.

Backstory: The NIH launched RECOVER in 2021, investing about $470 million in the program. Recent research from the study released last month showed that Black and Hispanic Americans were likely to have more symptoms and health problems associated with long Covid than white people but less likely to be diagnosed with the disease.

WELCOME TO TUESDAY PULSE — We’re going back to the moon! And coming in at a very close second for mind-blowing facts … drumroll please … You don’t have to hard-boil eggs to dye them. Life is never going to be the same. Send whatever news is rocking your world this week and keep those tips coming to kmahr@politico.com and dpayne@politico.com.

Today on our Pulse Check podcast, host Ben Leonard talks with David Lim, who explores the implications of the FTC’s decision to tell biotech company Illumina to dissolve its acquisition of Grail, a multicancer early-detection test company.

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A message from PhRMA:

Did you know that the three largest PBMs blocked access to more than 1,150 medicines last year? That includes medicines that could lower your costs at the pharmacy. Pharmacy benefit managers are putting their profits before you. Haven't heard about this? That’s by design.

 
HEALTH TECH

Medical research is pictured.

A new coalition is calling for algorithms used to treat diseases to be testable, safe, transparent and explainable. | Getty Images

A BLUEPRINT FOR HEALTH AI — The Coalition for Health AI, an alliance of major health systems and tech companies, has released a blueprint to build trust in artificial intelligence’s use in health care, Ben reports.

Who's in it? The coalition members include Google, Microsoft, Stanford University and John Hopkins University. CMS, the White House Office of Science and Technology Policy, the FDA, the NIH, the ONC and the Agency for Healthcare Research and Quality participate in the coalition as observers.

What does it want? They’re calling for algorithms used to treat diseases to be testable, safe, transparent and explainable and for software developers to take steps to mitigate bias and protect privacy, which isn’t always the case now.

“We have a Wild West of algorithms,” said Michael Pencina, coalition co-founder and director of Duke AI Health. “There’s so much focus on development and technological progress and not enough attention to its value, quality, ethical principles or health equity implications.”

MEANWHILE IN EUROPE … The EU is grappling with how to regulate AI medicines as more of them speed toward the market, POLITICO’s Ashleigh Furlong writes.

Pharma companies could use algorithms at all stages of the drug-development process: to identify which molecules could best target a specific disease, select patients for clinical trials based on how they’re expected to respond to a drug and extract trial data and complete forms for regulators. AI’s predictive powers could even eliminate the need to test drugs on animals.

All this poses a regulatory challenge, raising questions about the algorithms’ transparency, the risk of AI failure and, most importantly, the impact on a patient’s health.

While those in charge of approving new drugs in Europe are racing against the clock to be ready for the coming change, they’re not quite there yet.

 

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Public Health

HALF OF U.S. READY FOR YEARLY COVID SHOT — A new KFF poll shows about half of Americans say they’d get an annual Covid-19 shot if offered one.

More than a third of respondents said they weren’t likely to get one.

The FDA has said an annual shot is a potential way to protect Americans against Covid moving forward, and pharmaceutical companies are working on developing a combination flu and Covid shot. People who regularly get the flu shot were more likely to say they’d get the Covid shot, too.

In the same poll, about a third of Americans also said they’d never tested positive or thought they had the virus, with most citing that they avoided crowds.

A NEW MAP OF MATERNAL MORTALITY RISK — Last month, the CDC reported disturbing new data that maternal deaths shot up 40 percent between 2020 and 2021, with Black individuals having a significantly higher death risk.

A new study in the Lancet drilled down into that disparity by county, analyzing people’s location as a factor in their health outcomes during pregnancy. It found that Black women lived in counties where they were more vulnerable to harmful conditions during pregnancy than white women, including mental health and substance abuse, socioeconomic determinants and physical environment.

It found that pregnant people were most vulnerable in the South, due to mental health and substance abuse vulnerabilities. Those factors also affected maternal health in the Northeast, whereas in the Midwest and Texas, poor reproductive and general health care access played the largest role.

 

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At the Agencies

HHS ROLLS OUT NATIONAL CANCER PLAN — HHS rolled out its National Cancer Plan on Monday. The plan, developed by the NIH’s National Cancer Institute, is aimed at fulfilling President Joe Biden and First Lady Jill Biden’s pledge to “end cancer as we know it” by cutting cancer death rates by 50 percent in the next 25 years and turning fatal cancers into treatable diseases.

The national plan outlines eight goals and priorities: preventing cancer, detecting cancer early, developing effective treatments, eliminating inequities, delivering optimal care, engaging people in the fight, maximizing data utility and optimizing the workforce.

Names in the News

Alison Cohen is now health and domestic policy legislative aide for Rep. Jerry Nadler (D-N.Y.). She previously was a legislative aide for former Rep. Elaine Luria (D-Va.).

 

STEP INSIDE THE WEST WING: What's really happening in West Wing offices? Find out who's up, who's down, and who really has the president’s ear in our West Wing Playbook newsletter, the insider's guide to the Biden White House and Cabinet. For buzzy nuggets and details that you won't find anywhere else, subscribe today.

 
 
What We're Reading

In The Washington Post, former British foreign secretary David Miliband calls on the U.S. to take big action to stop childhood malnutrition as it did for HIV.

The Wall Street Journal writes about the next Ozempic.

White House Covid adviser Ashish Jha urges doctors to do more to fight misinformation, Stat reports.

 

A message from PhRMA:

Insurers and their PBMs don’t want you to see that you could be paying more than they are for your medicines. Rebates and discounts can significantly lower what insurers and PBMs pay for medicines. These savings can reduce the cost of some brand medicines by 50% or more. But insurers and PBMs aren’t required to share those savings with you at the pharmacy counter.

They don’t want you to see that they use deductibles, coinsurance and other tactics to shift more costs on to you. Or that the three largest PBMs control 80% of the prescription drug market. Or that last year they blocked access to more than 1,150 medicines, including medicines that could have lowered costs for you at the pharmacy. 

PBMs and insurance practices are shrouded in secrecy,  they need to be held accountable.  

 
 

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