Big Ugly Bill's "Dance, Spider, Dance!" mandate set to kick cancer & HIV patients off Medicaid

As I and many others have been warning about for the past year or so, the upcoming so-called "work requirements" (aka "paperwork hell" requirements) of last year's Big Ugly Bill are ramping up in January...and in fact have already begun in Nebraska. A few days ago the Centers for Medicare & Medicaid Services (CMS) published their "final rule" with the reporting and exemption regulations which every state which has expanded Medicaid under the Affordable Care Act will be required to follow...and, as expected, it's likely to be a disaster.

Via Selena Simmons-Duffin of NPR:

Advocates for people with serious illnesses, like cancer and HIV, say the strict Medicaid work rules that the Trump administration released this week are likely to put ongoing treatments in jeopardy.

...States must "make the changes, test the changes to make sure they're not going to break the system, and then go live," McIntyre says.

The nearly 400-page interim final rule released Monday makes that process even harder. For months, federal officials have been meeting with states informally and giving them guidance, and states understood that people with conditions where continuous health insurance coverage was really important would be exempt.

"What the rule says, as published, is that that's actually not enough," McIntyre explains. "The condition or the disease needs to be actively interfering with your ability to work. So people with early stage cancer who are in radiation treatment but still have the capacity to work, or people who have HIV but can still technically work, are not exempted from the work requirement."

McIntyre and others foresee situations where a person newly diagnosed with cancer, who is working, loses Medicaid because they don't fill out the paperwork correctly. That could lead to patients losing coverage when they need it most.

There were around 20.4 million Americans enrolled in Medicaid via ACA expansion as of a year ago. It's likely dropped a bit since then but should still be over the 20 million threshold.

I refuse to call the new rules "work requirements" because the vast majority of adults on Medicaid already work. Via a KFF analysis from last year, 54% of the Medicaid expansion population (adults 19 - 64 who don't otherwise receive disability payments, aren't enrolled in Medicare, etc) work at least 80 hours per month (the minimum requirement under the new rules); another 9% are enrolled in school full time; 15% are sick or disabled (ie, the conditions which are kind of the reason why having Medicaid coverage is so important to begin with); and 2% are caregivers for sick/disabled relatives.

That leaves just 21% who could possibly fall into the GOP's cliche of a "lazy, good-for-nothing layabout" type. The point is that the new law doesn't require them to work, it requires them to prove that they work via what's almost certain, based on past experiments with this sort of program, to be a Kafkaesque nightmare for many people.

I call it the "Dance, Spider, Dance!" rule because it's basically designed to do two things: Kick as many poor people off of healthcare coverage as possible (that's where the $300 billion in projected "savings" to the federal government are supposed to come from, after all)...and to pretty much humiliate everyone else who holds onto the coverage, by making them jump through hoops and basically sing for their supper.

Medical groups and advocates for patients uniformly panned the rule. A coalition of 48 patient organizations wrote in a joint statement: "Our organizations are deeply concerned the interim final rule does not protect people with serious or complex health conditions and would instead dramatically and inappropriately increase the number of people who will lose their healthcare coverage."

..."We're just going to lose people to Medicaid and then they're going to get sick and then they're going to die,"

..."The new burdensome requirements that many parents will face under this rule will ultimately undermine families' health and financial stability," Dr. Andrew D. Racine, the president of the AAP, wrote in a statement. "The policies to narrowly define who qualifies for exemptions will add to the state costs to administer the program, create headaches for families trying to navigate the bureaucracy, and harm the very people that Medicaid is meant to serve."

In addition, the claims that this is supposed to be a "jobs program" is also nonsense:

...Jennifer Wagner, who analyzes Medicaid eligibility and enrollment at the left-leaning Center on Budget and Policy Priorities, points out that there's no funding here to help people find or keep work, as there is in other public programs with work requirements, like food assistance.

"That just implies or suggests that somebody could get a job if they wanted — they just need a little shove," Wagner says. "Which just reflects a complete lack of understanding of what people are actually going through."

I should also note that while this may have changed (I haven't read through the full 400-page reporting requirement document yet), almost exactly a year ago I pointed out that there's a good chance that up to 20% of Medicaid expansion enrollees may literally not even be able to report their compliance hours due to technical limitations:

The OpEd goes on to discuss the false hope of advanced technology solving these problems, but there's another tech-related point I wanted to explore further: Computer ownership & internet access. The first story is from 2019 and technological adoption moves quickly, so I decided to find more recent data.

The most recent reliable, relevant source I could find is the American Community Survey by the U.S. Census Bureau from 2023. That's still 2 years out of date but it'll have to do.

Anyway, according to the ACS, over 5.2 million U.S. households--3.9% of the total--still didn't have any computer of any sort as of 2023--that means no laptops, desktops, smartphones or tablets of any kind.

In addition, over 10.3 million households--7.8% of the total still had no internet service of any type--broadband, DSL, satellite, fiber optic, cellular data or even dial-up.

...If you limit this to the 40 states (+DC) which have expanded Medicaid under the ACA, the total percentages are roughly the same, but they vary widely by state.

The expansion states with the highest percent of households without any type of computer are West Virginia (7.9%), GOP Speaker of the House Mike Johnson's home state of Louisiana (5.6%) and Arkansas (5.0%).

The expansion states with the highest percent of households without any type of internet service are, once again, West Virginia (12.9%), Louisiana (11.9%) and Arkansas (11.5%).

...According to the 2023 ACS, a whopping 22.3% of households earning less than $20K/year didn't have any type of internet service (or nearly 2.45 million), while 10.1% of households in the $25K - $75K range didn't (3.39 million). Adding 1/3 of the $25K-$75K group, that means at least 3.6 million households with at least one Medicaid expansion enrollee would have no obvious way of reporting their "compliance" hours.

Since at least some of those households have more than one person enrolled in Medicaid via ACA expansion, it likely means more like 4 million actual enrollees.

That's 20% of the Medicaid expansion population.

...Once again: The entire point of imposing "work requirements" on the Medicaid population in the One Big Ugly Bill is specifically to reduce federal spending on Medicaid. The only way to do that is to kick people off of the program, and since the goal is to "save" several hundred billion dollars, that means having to kick millions of people off. That, in turn, means deliberately making the "reporting requirements" as onerous and difficult to comply with as possible.

And hey, throwing cancer & HIV patients under the bus is sure to "save" quite a bit of money, I'm sure; they won't cost the federal government a dime after they die. Ironically, they'll also likely kick off a few people who were literally thrown under a bus as well.