How the workforce shortage is harming care for adults with disabilities

Aug 10, 2022

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With Dan Goldberg, Megan Wilson and Tucker Doherty

WELCOME TO WEDNESDAY PULSE — Domino's finally gives up in Italy. How did it take this long for the American chain to get the hint? Send your favorite Italian pizza joint, news and tips to kmahr@politico.com and dpayne@politico.com . (We'll go first: Pizzarium, near the Vatican. Prego.)

A message from PhRMA:

Why won't government price setting work for most patients? Over 50% of what you pay for medicines goes to middlemen like PBMs, insurers, government, and others. Insurers and PBMs determine which medicines will be covered and how much patients will pay OOP. And 80% of the pharmacy market is controlled by just three PBMs. Congress should address the real drivers of health care costs, not threaten future treatments and cures. Fix abusive insurance practices and end the PBM shell game. Stand up for patients.

Driving the Day

A health aide helps a man walk through his home.

Adults with intellectual and developmental disabilities are being denied critical services because of a chronic workforce shortage. | AP Photo/Darron Cummings

'WHAT IS GOING TO HAPPEN TO HER?' — Hundreds of thousands of adults with intellectual and developmental disabilities are being denied the services they need because of a chronic workforce shortage exacerbated by the pandemic and once-in-a-generation inflation, Dan reports.

Interviews with more than a dozen providers across the country reveal a patchwork of perennially cash-strapped programs unable to recruit and retain staff, leaving desperate families on yearslong waiting lists.

While Amazon, Target, Hobby Lobby and other companies can raise salaries to remain competitive, most providers rely on Medicaid rates set by the state, which rarely keep up with inflation. When wage inflation is rampant, those agencies can't compete and are forced to turn people away, leaving them with aging parents who sometimes struggle with feeding, bathing and toileting their grown children.

"I just had my 60th birthday and I am tired and my health is failing and I'm not going to live forever," said Pam Walley, who cares for her 27-year-old daughter with special needs. "What is going to happen to her? … I don't want her to be in an institution, I don't want her to live in a nursing home, but frankly, that's all that exists for her."

SCOOP : DIALYSIS SERVICES BILL CRIBBED FROM DAVITA DRAFT — After dialysis giant DaVita lost a Supreme Court case regarding coverage benefits for people with advanced kidney failure, the company went to work to get a legislative fix, Megan reports .

Metadata from a Word document obtained by POLITICO shows that Kathleen Waters, the company's chief legal officer, and Kelly Philson, one of its top lobbyists, drafted proposed legislative language on July 14 that was then mirrored by lawmakers in legislation introduced in the House and Senate weeks later. The bill would prohibit a group health plan from putting "limits, restrictions, or conditions" on dialysis benefits compared to services needed to treat other chronic conditions covered by the plan.

In June, the Supreme Court ruled an employer-based health plan didn't run afoul of federal law when it only offered out-of-network coverage for dialysis services.

After the decision "created a loophole" that might encourage more employers to stop in-network coverage, a DaVita spokesperson told Megan in an emailed statement, "Members of Congress who are concerned about the potential harmful impact to their constituents in this vulnerable patient population started working to restore the protections under the Medicare Secondary Payer Act."

But by creating parity between kidney failure and all other chronic conditions, group plan advocates say, it effectively forces nearly comprehensive coverage and — because DaVita and Fresenius, another dialysis giant, dominate 80 percent of the market — they have the leverage to raise prices.

A healthcare worker prepares to administer a vaccine.

The FDA has authorized emergency use of monkeypox vaccines amidst rising cases. | Joe Raedle/Getty Images

MAKING THE MOST OF THOSE MONKEYPOX VACCINES — The Food and Drug Administration issued an emergency use authorization on Tuesday for the monkeypox vaccine that the Biden Administration hopes will help its limited number of doses go further, Krista and our Katherine Ellen Foley report .

The EUA allows providers to inject a fraction of a dose of the Jynneos vaccine to adults between layers of skin instead of beneath it. Two vaccine doses four weeks apart will still be required, but the new method will increase the number of doses available by "up to fivefold," according to the FDA.

Given the limited data supporting the method's efficacy — based on a 2015 NIH study, as POLITICO's Erin Banco reported Monday — the move indicates how much pressure the administration is now under to stop the spreading virus after its arrival in the spring caught the administration flat-footed.

Currently, 441,000 doses of the Jynneos vaccine are stored in the Strategic National Stockpile, according to the Department of Health and Human Services. If each vial is split into five doses, per the new approach, 2.2 million doses could be available.

But the strategy has also sparked concerns among public health experts and health advocates who say not enough data is available on the amount of protection the vaccine will provide against the virus, it could be harder to administer and it will generate further confusion in the middle of a growing public health crisis.

Some see the approach as the direct result of a series of missed opportunities and failures by the Biden administration to contain the virus by not ramping up testing earlier and securing and distributing vaccines more quickly.

Meanwhile, in Europe, with 16,500 cases of monkeypox now reported in Europe — largely among men who have sex with men — some residents are taking matters into their own hands by designing their own health information campaigns and even traveling across borders in search of vaccines, our POLITICO Europe colleagues report .

Lille, in northern France, has become an unexpected pilgrimage site for people from nearby countries seeking the monkeypox vaccine because of its willingness to give shots to foreign visitors, even though the government officially reserves monkeypox vaccines for French residents.

A message from PhRMA:

In Congress

HOUSE EXTENDS PROXY VOTING — Proxy voting in the House has been extended again, with the practice continuing until at least Sept. 26, according to a "Dear Colleague" letter sent on Tuesday by Speaker Nancy Pelosi, POLITICO's Nancy Vu reports.

Proxy voting has been in practice in the lower chamber since May 2020 in response to the ongoing coronavirus pandemic. Even with the rates of new cases and deaths significantly decreasing since the pandemic's beginning, the chamber has extended the proxy voting period a number of times, usually by increments of roughly 45 days.

When will the chamber end the practice? Unclear. The latest update expands proxy voting well into the House's September working period but leaves out the last three days the chamber is scheduled to vote.

Even if Democrats continue the practice for the rest of this term, Republicans have made no secret they'll end it if they take over the House majority next year, as expected.

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At the Agencies

THINGS GET TENSE BETWEEN DEA AND CANNABIS FIRMS — The DEA is obstructing badly needed research into cannabis, despite widespread agreement that the work is needed as marijuana legalization spreads across the country, writes POLITICO's Mona Zhang.

At least, that's according to a company pushing to produce cannabis for clinical trials. NuSachi has submitted three applications to produce research cannabis but says the agency is failing to comply with its own regulations and statutory deadlines for processing two of the company's applications to produce Schedule I substances for clinical trials.

The bureaucratic morass that NuSachi faces is emblematic of the obstacles that often thwart companies seeking to produce marijuana for research, even as Congress has embraced bipartisan legislation designed to expand research and 38 states have legalized marijuana for medical or recreational use.

IN THE STATES

FLORIDA MOVES TO SINGLE MONKEYPOX DOSE — Florida has become the latest locale to try to stretch its vaccine monkeypox supplies by administering only the first of two shots, POLITICO's Arek Sarkissian reports .

The Florida Department of Health counted 985 people infected by the monkeypox virus as of Tuesday, marking a jump from the 525 infections reported one week ago. The agency has ordered the full 72,000 vaccine doses allocated by HHS, which will be delivered in installments through October.

But the allocation isn't enough to keep up with the outbreak, prompting the state Department of Health to alert county health offices to reschedule appointments for thousands of people who had planned to receive a second dose.

Names in the News

DJ Sigworth is now director of scheduling and advance for first lady Jill Biden. He most recently was director of Covid principal protection at the White House.

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What We're Reading

Access to trauma care across the country is getting better but remains patchy, STAT reports .

The Wall Street Journal writes about the Ukrainian city occupied by Russian forces and at risk of a nuclear disaster.

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