Priorities
By David
Dayen
Yesterday was the 61st anniversary of the signing of
Medicare and Medicaid, a promise by the government to at least care for the
oldest and most vulnerable people in our society. Today is the deadline for
public comment on a rule that could force severely ill patients with cancer,
HIV, and other ailments to get out of their hospital beds and go to work if
they want the government to keep that promise.
The new rule, which was spurred by cuts to Medicaid in the One Big Beautiful Bill Act (OBBBA) but was not required in the text, adds a layer of bureaucracy for “medically frail” individuals who got a statutory exemption from the law’s new work requirements for health coverage.
Medical frailty has long been a concept in
Medicaid, giving patients suffering from serious conditions the ability to
access coverage. But the administration’s interim final rule published last
month said that not only would individuals have to exhibit one of the medically
frail conditions, but their condition would have to “significantly impair”
their ability to work.
“That’s not an existing standard, and there’s no data source
for that information,” said Jennifer Wagner with the Center on Budget and
Policy Priorities (CBPP). This means that states, which are partners in
Medicaid, will have to establish an entire regime for verifying “significant
impairment” on the fly, and justify it to a federal government that is quick to
say that anything resembling expansion of assistance to the poor is actually
fraud. “There’s language in the [rule] that says ‘we will hold states
accountable’ if they don’t follow this unclear definition precisely,” Wagner
said.
So people with serious medical maladies—osteosarcoma
patients suffering severe bone weakness, for instance—will have to jump through
very undefined bureaucratic hoops to “prove” they cannot work 80 hours a month,
with the risk of a coverage loss if that’s denied. Even a temporary coverage
gap could be serious. “They will die, they will become sick,” said Carl Schmid,
executive director of the HIV+Hepatitis Policy Institute in Washington. “That’s
why we pushed so hard for the exemption, because we know the ramifications of
people losing access to health care.”
Schmid cited estimates that
145,000 Americans living with HIV could be affected by the change. About 40
percent of all Americans with HIV rely on Medicaid, according to Schmid.
Twenty-four states and two governors filed suit against the Centers for Medicare & Medicaid Services (CMS) over the rule change. District court judge Richard Stearns refused to issue a preliminary injunction against the rule this week but promised an expedited briefing schedule that would address the merits of the case before it is implemented along with the work requirement deadline at the beginning of next year.
AT ISSUE IS SECTION 71119 OF OBBBA, requiring that
most Medicaid recipients work at least 80 hours a month or spend a similar
amount of time in school, training, or volunteer work. This is the source of
the largest amount of cuts to Medicaid in the law. CBPP estimates that as
many as 36 million Medicaid enrollees will be affected by the new
burden. The Congressional Budget Office has predicted that
five million enrollees will lose coverage; the Urban Institute puts that number
at seven
million.
Studies have shown that Medicaid work requirements do not
increase overall work hours. The goal is simply to get enrollees tangled up in
paperwork. “Their big ugly bill was designed to kick eligible people off of
Medicaid to pay for tax cuts that benefit big corporations and special-interest
donors,” said Sen. Tammy Baldwin at a press event about the Medicaid changes.
The law included an exemption for medically frail
individuals and listed various categories defining that condition. The
categories included blindness; substance abuse disorders; “disabling” mental
health disorders; physical, intellectual, or developmental disabilities that
impair activities of daily living; and serious and complex medical conditions.
But CMS had the job of creating the specific definition of
medical frailty. For several months, its guidance
to states was that it would be defined by conditions that would grow
worse if people lost coverage. Republicans quoted during the debate over
OBBBA said the same
thing. That would be a simple process; pulling diagnostic codes that
correspond to the exemption would be relatively automated.
“When we had meetings with this administration, they said,
‘How did you fare in the past?’ And we said we were exempt,” said Schmid. “They
came back and said, ‘Can’t they work?’ I said they can work, many of them do.
But they cannot lose access to their care and treatment, it’s just that
critical. What are you going to do, they lose coverage, then they get sick, and
then they’re eligible?”
But the new rule effectively
does just that. It requires medically frail patients to certify that they are
too significantly impaired to comply with the work requirement. If they aren’t
sick enough, they would have to work or do some equivalent service.
This will almost certainly reduce the number of people who
get the exemption, even among those who are eligible for it. Work requirements
in Medicaid have delivered poor results when tried, like
in Georgia, where bureaucratic hurdles routinely interrupt coverage and
where verification structures are expensive for the government to maintain. In
Arkansas, 18,000
eligible enrollees lost coverage in the first couple of months of
implementation of a work requirement in 2018, primarily because of paperwork
burdens.
When we’re talking about health coverage, even slight gaps
are a matter of life or death, because most people with special needs require
continuous care.
Alexander Liu is a Medicaid patient from Nebraska, made
available on a press call by Caring Across Generations and other stakeholders.
“I officially started collecting diagnoses when I was 20,” Liu said, citing
multiple disorders and low vision, which eventually was determined to be caused
by a brain tumor “making my brain a pressure cooker.” He will soon be legally
blind.
Read:
The Big Beautiful Bill’s market-based health care delusion
“People facing serious illness and disabilities should not
have to prove they’re working enough hours while undergoing surgery and
recovery from a brain injury,” Liu said on the call. “These funding cuts will
kill people, I’m literally living proof of that.”
Rebecca Reed, a Medicaid beneficiary and breast cancer
survivor from Wisconsin, told her story as well. She’s been through a gauntlet
of care that’s included surgeries, chemotherapy, and radiation. She’s eager to
return to her work as a paralegal, but future care needs would necessarily get
in the way. “I have another surgery ahead of me,” she said. “There are
appointments nearly every day, even through my post-recovery. I’m trying to get
back to work even though I’m going to have to take off next year.”
That’s the problem with the rule, advocates say;
inconsistent work hours from one month to the next can get someone dropped from
coverage.
THE RULE WAS ISSUED JUNE 1, just seven months before
the implementation deadline. States that already implemented work
requirements—as Nebraska did in May—had to go back and redo their system after
the rule was introduced. The state put out a list of diagnostic codes for
medical frailty, but it’s not clear that will be enough, since the new
requirement is more individual than just having a particular disease or
illness.
No method was identified for how to handle the significant
impairment requirement. In 2027, the first year of implementation, states can
allow the medically frail to self-attest. But even that is different from an
automated renewal, requiring forms that have to be filled out correctly,
returned by a deadline, and processed.
After that, documentation is required. And nobody knows what
documentation. Is it a doctor’s note? Would the patient need to supply medical
records or insurance claim data to the government? Would pharmacy claims, usage
of durable medical equipment, or frequent medical visits suffice? These are new
and unclear burdens. “States don’t have a ton of capacity,” Wagner said. No
additional money is given to the states to implement.
The lawsuit from the states says that the significant
impairment rule defies congressional intent. “Nowhere in H.R. 1 does Congress
state that individuals’ ability to work must be impaired in order to be
‘medically frail or otherwise have special medical needs,’ or to have a
‘serious or complex medical condition,’” the complaint reads.
For HIV patients affected by the rule, there is a fallback:
the Ryan White HIV/AIDS Program, which provides assistance with retroviral
drugs. But that assistance program hasn’t seen an increase in funding in 13
years, and if more people flood to use it, the fiscal crunch will be even
sharper. “Ryan White is the payer of last resort, and it’s already stretched,”
Schmid said.
Over 20,000
comments have been received on the rule thus far, most of them against
the change to the medical frailty requirements. Many show the dangers of
interrupting continuous coverage for these populations. “My developmentally
disabled daughter has already lost her Medicaid one time due to a form being
missed and me having to sit on hold for literally 90 minutes and still not
being helped,” one commenter
wrote. “The process is extremely complicated and needs to be streamlined
not made worse.”
But it’s unclear what the comments will actually do:
The initial
posting of the rule said the regulations would be effective on July
31, today.
Republicans have consistently condemned the overly
bureaucratic nature of the government over the years, but this hurdle is not
only the epitome of the worst kind of Kafkaesque bureaucracy, it hits extremely
vulnerable and stressed people, forcing them to juggle forms while their health
and even their lives hang in the balance.
“It’s terrible in our country that we are seeking to deny
health care to these people,” said Schmid. “It’s inhumane, I believe.”
David Dayen is the executive editor of The American Prospect. He is the author of Monopolized: Life in the Age of Corporate Power and Chain of Title: How Three Ordinary Americans Uncovered Wall Street’s Great Foreclosure Fraud. He co-hosts the podcast Organized Money with Matt Stoller. He can be reached on Signal at ddayen.90. More by David Dayen
