The Washington PostDemocracy Dies in Darkness

The Health 202: Activists are pouring pressure on Democrats to prioritize home-care funding

with Alexandra Ellerbeck

Democrats have a long list of health-related priorities, as they start intensive work on filling in the details of their massive budget reconciliation bill.

But it’s a long list, and not everything will make it in. Reforms that cost a lot of money are in particular danger of being discarded.

Activists are concerned that an expensive effort to expand home health care will fall by the wayside.

President Biden called for $400 billion in spending on home health services, as part of the jobs package he rolled out in April. 

It’s a reasonable ask, considering Americans’ considerable lack of access to long-term care. Medicare largely doesn’t cover long-term care, requiring elderly or disabled Americans without other financial resources to spend their way into poverty to get covered through the Medicaid program.

As I reported previously: 

“Demand will grow as the nation’s senior population expands over the next decade, experts have warned. And it will largely be middle-income seniors who find themselves in a financial bind, often without enough savings to pay for long-term care yet not poor enough to qualify for Medicaid.

2019 study published in Health Affairs found that even if middle-income seniors devote 100 percent of their annual income to assisted living costs, only 19 percent of the population would have any money left over for other expenses.”

Prominent activist Ady Barkan has taken this on as an issue.

For the past five years, Barkan has been living with amyotrophic lateral sclerosis (typically referred to as ALS) — a progressive, degenerative disease that gradually paralyzes the body. Barkan gained widespread attention and support as he passionately advocated for Medicare-for-all during several hearings in 2019, speaking with assistance through a computer.

Lately, through his Be A Hero project, Barkan’s been pushing for lawmakers to approve hundreds of billions of dollars in new spending for home health care, explaining his own challenges in accessing the 24-hours-a-day care that his illness necessitates.

Barkan wrote me in an email that he would have been forced into a nursing home had he not had access to good insurance (although he stressed that it still doesn’t cover all the costs) and some wealthy friends who pay for the rest. But that’s not the case for many others in similar situations, he noted.

“For people like me, accessing Medicaid can be impossible, or require harmful steps, such as needing to divorce a spouse or becoming impoverished, before care is obtainable,” Barkan wrote. “And, if Medicaid does provide home care, which it rarely does, it is often not enough.”

Democrats are charging forward with their spending strategy — and health care is a big part of it.

In the wee hours of Wednesday morning, the Senate passed a $3.5 trillion budget resolution which opens the doorway to sweeping changes to the nation’s health care, education and tax laws, passed on a partisan basis.

“Chiefly written by Sen. Bernie Sanders (I-Vt.), the $3.5 trillion blueprint sets in motion Democrats’ plans to expand Medicare, combat climate change and boost federal safety net programs, including those that target children and low-income parents,” The Washington Post’s Tony Romm reports. 

“It paves the way for universal prekindergarten and new family leave benefits, and it aims to help immigrants obtain legal permanent residency status. Democrats aspire to finance the array of new initiatives through tax increases targeting wealthy families and profitable corporations, undoing the rate cuts imposed under President Donald Trump.

Once the House passes the budget resolution, likely later this month, it will be up to the House committees to fill out the specific details of the legislation. The chamber’s two health-related committees — Energy and Commerce, Ways and Means — will weigh a bevy of health-related provisions, including whether to permanently expand Affordable Care Act tax credits, create new Medicare vision, dental and hearing benefits, and expand Medicaid in the states that still refuse to do so.

“Now health care is back at the center of the congressional and Democratic political agenda,” Leslie Dach, executive director of Protect Our Care, wrote to me. “What seemed like last year’s news is now next year’s news (and this year’s).”

But funding for home health care doesn’t seem to be at the top of Democrats’ list.

Spending on home health care is among the options. Barkan’s group is pushing for language from the Better Care Better Jobs Act to be included in the reconciliation bill. That measure, introduced in June by Senate Majority Leader Charles E. Schumer (N.Y.) and six other Democratic senators, details a way to expand home-based services through the Medicaid program.

But it’s so expensive that it may keep getting pushed further down on the priority list, lobbyists told me. Even Barkan admitted that.

“To be honest, I don’t know if we’ll be able to secure full funding for home and community based care, but I do know we can’t rely on hope alone,” Barkan wrote.

Ahh, oof and ouch

AHH: As soon as today, the FDA is expected to authorize extra vaccine doses for the immunocompromised.

The move that could mean additional shots will be available for that vulnerable population as soon as this weekend, The Post's Laurie McGinley and Lena H. Sun report. “The FDA action on the immunocompromised is likely to affect transplant patients who take immune-suppressing drugs to prevent rejection of new organs and others who have diseases, including blood cancers, that damage the immune system.”

“Making such patients eligible for an extra shot, doctors say, is preferable to having worried patients seek out additional inoculations illicitly — which is already happening. Federal health officials have estimated that about 3 percent of U.S. adults are immunocompromised. They are more likely to become seriously ill from covid-19, experts say.”

As new coronavirus variants emerge and the longevity of vaccine protection remains unknown, scientists are researching how booster shots could work. (Video: John Farrell/The Washington Post)
OOF: California will require coronavirus vaccination or testing for teachers and school staff.

Gov. Gavin Newsom (D) cited the surging delta variant and data on the safety of vaccines in a statement announcing the decision. School staff members who opt not to be vaccinated will need to submit to regular testing, The Post's Laura Meckler reports.

“We think this is the right thing to do and we think this is a sustainable way to keep our schools open,” he told reporters. “It’s the right thing to do to keep our most precious resource healthy and safe, our children.”

California Gov. Gavin Newsom (D) on Aug. 11 mandated that teachers and school staff "submit a verification of vaccination and/or submit to weekly testing." (Video: Reuters)

National teachers unions estimate that 90 percent of teachers have been vaccinated already, but Newsom said it was vital to ensure high vaccination uptake among support staff, including paraprofessionals, bus drivers and janitors.

While California is the first state to require vaccinations for teachers, New York City and Washington, D.C., have announced similar measures.

OUCH: Hospitals are running out of staff to care for covid-19 patients in states like Louisiana and Arkansas.

“According to hospital executives and nursing administrators in several states, the struggle to find enough workers to care for people sick with covid-19 has emerged as a critical problem as other daunting shortages, widespread early in the pandemic, have eased,” The Post's Amy Goldstein reports. “Once-scarce supplies of protective gear, ventilators and coronavirus tests are now plentiful, hospital officials consistently say.”

Officials say finding ways to hire and keep nurses is the main problem. “The shortages are starting to interfere with other types of care,” Amy writes. “The disruptions are not as pronounced as during the pandemic’s early months, when hospitals routinely canceled elective procedures and other patients stayed away from needed treatment for fear of contracting the virus. Still, certain hospitals in the hottest of hot spots, such as the medical centers run by Memorial, are slowing other types of care so they can redeploy staff.”

More in coronavirus news

The CDC is urging pregnant women to get the vaccine.

“CDC encourages all pregnant people or people who are thinking about becoming pregnant and those breastfeeding to get vaccinated to protect themselves from COVID-19,” Centers for Disease Control and Prevention Director Rochelle Walensky said in a statement. 

The updated advice comes after the CDC found no increased risk of miscarriage among those who had been immunized. The agency had previously said that pregnant people were eligible for the vaccine but had stopped short of a stronger recommendation due to a lack of data. Other research has shown that contracting covid-19 during pregnancy increases the risk of preterm birth, The Post’s Lenny Bernstein and Brittany Shammas report.

  • The Food and Drug Administration is poised to authorize an extra dose of the Moderna or Pfizer coronavirus vaccines for some immunocompromised patients, CNN's Kaitlan Collins and John Bonifield report
  • The average number of kids being hospitalized with covid-19, more than 200 a week, matches the highest rates during the pandemic’s peak in early January, and some pediatric doctors say they are seeing more critically ill kids than at any other point in the pandemic, the New York Time’s Emily Anthes reports. Most children with covid-19 still have mild symptoms and there’s not enough evidence yet to say that the delta variant causes more severe illness. It could be the fact that the variant is just so much more contagious that more kids are getting sick, which means more are ending up in the hospital.
  • World Health Organization Director General Tedros Adhanom Ghebreyesus predicted that if the world continues on its current trajectory, it could see more than 100 million additional recorded cases of covid-19 by early next year, The Post’s Brittany Shammas, Adam Taylor, Adela Suliman and Bryan Pietsch report. So far, there have been 200 million recorded cases of covid-19, although Tedros pointed out that the real number is almost certainly much higher.
  • Republicans and some industry groups are gearing up to oppose any efforts by the Biden administration to use its power of the purse to compel vaccinations, Politico’s Rachel Roubein reports. The administration has floated withholding federal funding from certain institutions, like nursing homes and health facilities, unless they mandate coronavirus vaccines. Multiple Republicans told Politico that they would oppose such a measure, as did some other groups. LeadingAge, the national association representing nonprofit aging services providers, said it encourages vaccine mandates but was opposed to any effort to compel them by withholding federal funds.

The battle over pricey drugs

Vulnerable Democrats are ramping up pressure for Medicare to negotiate drug prices.

Sens. Michael F. Bennet (Colo.), Catherine Cortez Masto (Nev.), Mark Kelly (Ariz.), Raphael G. Warnock (Ga.) and Maggie Hassan (N.H.), all vulnerable lawmakers up for reelection next year, renewed a push to let Medicare negotiate lower drug prices, Stat’s Rachel Cohrs reports.

The lawmakers filed an amendment as part of the budget reconciliation process Democrats hope to use to push their social safety-net agenda. The move was mostly symbolic: The amendment did not come up for a vote before Democrats passed legislation outlining the overall budget framework. Still, the amendment sends a message that the key Democrats hope to campaign on drug pricing policies in the 2022 midterm elections.

“Every lawmaker has leverage in the narrowly divided Senate, but this group will especially have leadership’s ear as they fight to hold onto their seats to preserve Democrats’ perilous majority in the 2022 midterm elections. Three of the lawmakers are on the Finance Committee, which will be responsible for crafting the drug pricing policy that will be included in Democrats’ behemoth budget bill,” Rachel writes.

The VA will not include Biogen’s controversial Alzheimer’s treatment on its list of approved drugs.

“The Department of Veterans Affairs is the largest health system so far to decline use of the drug, which was approved in June by the Food and Drug Administration even though one of Biogen’s two large-scale clinical trials failed to show a benefit for patients diagnosed with the mind-wasting disease,” Reuters reports.

The VA said that it was excluding the drug, known as aduhelm, due to a lack of evidence of its efficacy in slowing cognitive decline. The drug also carries a hefty price tag, at $56,000 a year. Still, individual VA facilities are able to request access to drugs that are not on the list of approved medications.

Several major hospital systems, including the Cleveland Clinic and Mount Sinai Health System, have also said they do not intend to prescribe the drug to patients. The most important decision, however, will come when Medicare decides whether or not to cover the drug.

A new pharma industry ad is misleading, according to The Post’s Fact Checker.

A new advertisement sponsored by Pharmaceutical Research and Manufacturers of America features Sue, a woman with Type 1 diabetes who warns that proposals in Congress would make it harder for people on Medicare, like her, to get the medicine they need.

“They want to repeal a protection in Medicare that protects access to my medicines. They call it negotiation, but it really means the government decides what medicines I can get,” Sue says.

An ad posted by the Pharmaceutical Research & Manufacturers of America on Aug. 5 mischaracterizes the impacts of pending legislation related to Medicare. (Video: PhRMA | YouTube)

The issue in question is something called “the noninterference clause” — a provision that prevents the federal government from negotiating or setting the prices for drugs in Part D of the Medicare program. The Biden administration and many lawmakers are hoping to do away with that provision in an effort to allow the federal government to negotiate lower prices.

So is Sue correct that lawmakers are looking to pass legislation that would let the government decide what medicines she can get? Not really, says The Post’s Fact Checker Glenn Kessler.

“The ad misleadingly suggests that legislation is designed to restrict Sue’s drugs and make it harder for Medicare patients to get drugs. That’s not the intention at all,” Glenn writes. “The market implications are impossible to predict, giving PhRMA a foothold to warn about the possible impact. But that’s not an excuse for claiming there are provisions in the legislation that do not exist.” The final verdict: Glenn awarded the ad Three Pinocchios.

Sugar rush