Michigan Disability Resistance

It's been nearly 10 years since I was rushed to the hospital at 4 am, but you don't forget something like that.

Internal bleeding. "It's gone septic," my wife recalls hearing, understanding only that that meant something serious. Something dangerous. Rough translation: blood poisoning.

All I remember is passing out in a hospital bed. My wife says I called out for my mother, who died in 1981. It looked like I was going to join her.

The bleeding was set off a few days earlier by a surgeon's blunder, in another hospital, during an unrelated gastroenterological procedure. In context, I was lucky: I was in a well-equipped, big-city medical center. I was quickly surrounded by medical staff.

But there was a delay. "Is he full code?" someone needed to know.

Fortunately, my wife was clear about my desire to live. We'd discussed this possibility before. And, in time, I made a full recovery. But not everyone has a significant other like mine. What happens to them? Does everybody in such dire straits get asked this question?

Police in Oklahoma City on Tuesday night fatally shot a deaf man who they say was advancing toward them with a metal pipe as witnesses yelled that the man was deaf and could not hear them.

It's the fifth officer-involved shooting in the city this year, according to the Oklahoma City Police Department.

Officers were responding to a hit-and-run accident around 8:15 p.m., Capt. Bo Mathews, the police department's public information officer, told reporters Wednesday. A witness of the accident told police a vehicle involved went to a nearby address.

Police ordered Sanchez to drop the weapon and get on the ground, Mathews said. Both officers had weapons drawn — Lindsey had a Taser and Barnes a gun. Sanchez came off the porch and was walking toward Barnes.

"The witnesses also were yelling that this person, Mr. Sanchez, was deaf and could not hear. The officers didn't know this at the time," Mathews said.

Both officers fired their weapons at the same time when Sanchez was about 15 feet away from them; more than one shot was fired, the police captain said.

After spending the past year visiting more than 100 nursing homes across the United States, I am sickened but not surprised to hear of the avoidable horrors people in facilities in Florida and Texas have suffered from hurricanes Harvey and Irma: most recently eight dead near Miami. Even on normal days many people in nursing homes face grave risks.

While my research focused on the use of antipsychotic drugs in people with dementia as “chemical straightjackets,” I encountered other types of abuse and neglect in many of the 109 facilities I visited. Residents and their families described abuse, isolation, and repeated falls. On one unannounced visit, I encountered an older man helplessly splayed on the floor, naked – as staff walked by with food trays. One simply said, “Again?”

Many who work in nursing homes are dedicated, skilled professionals. However, they control most aspects of life for people inside, which can be a real danger when government oversight is inadequate (as it usually is). As one nursing home administrator in Miami told me: “That’s up to us to decide if we’re violating their rights.”

The facility outside Miami where eight residents died last week has been cited for 33 deficiencies since 2014 for noncompliance with federal regulations. The sheer number of those citations seems to show that these tags and small associated fines have not deterred the facility from further noncompliance. Meanwhile the industry is lobbying for deregulation and weaker enforcement of such regulations. It has successfully pushed for lesser financial penalties to attach for many instances of noncompliance with the law and is pressing for delayed implementation of Obama-era regulations that will strengthen protections for people in nursing facilities. As the New York Times points out, the new rule includes measures that might have saved lives last week: ensuring emergency power sources are able to maintain safe temperatures, for example.

The first disease-modifying treatment for spinal muscular atrophy (SMA), nusinersen, was approved by the US Food and Drug Administration (FDA) on Dec 23, 2016, and by the European Medicines Agency (EMA) on May 30, 2017. The approval was based on evidence of clinically meaningful improvements in motor milestones in young children with varying degrees of disease severity from two clinical trials (ENDEAR, NCT02193074, and CHERISH, NCT02292537). The regulatory approval is a historic development, but it is unlikely that the drug will be available to all patients who would benefit from treatment, unless its manufacturer offers a fairer price than the current cost of this drug.

Nusinersen, an antisense oligonucleotide, is given by intrathecal injection, at a cost of US$125 000 per injection. Six doses are required in the first year and three doses per year after that; hence, the treatment amounts to US$750 000 for the first year and US$375 000 for every year afterwards. This estimate does not account for administration costs. The marketing process has just started in Europe, separately for each country, with prices likely to vary between countries. Although the drug has not been approved in all countries yet, nusinersen is available worldwide, depending on local laws and regulations, through the manufacturer's Expanded Access Programme (EAP). However, even though the drug has been approved for all SMA types, only patients with infantile-onset SMA (consistent with type 1) are eligible for the EAP. Similarly, not all US-based health insurance companies will cover nusinersen therapy for patients with late-onset SMA (consistent with type 2 and 3) as the benefits in clinical trials were less clear compared with those in patients with type 1 SMA.

1. Medicaid covers one in five Americans.
   
   
2. Medicaid is the nation’s largest health care provider.
   
   
3. Medicaid covers 40% of America’s children – over 30 million children.
   
   
4. Medicaid covers half of all births in America.
   
   
5. One in five Medicaid dollars is spent on children.
   
   
6. 2/3 of the school districts that bill Medicaid use the money to pay salaries of employees who work directly with children such as school nurses and therapists.
   
   
7. Medicaid reimbursement constitutes the third largest federal funding stream to our nation’s public schools.
   
   
8. Medicaid costs roughly $553 billion dollars, with $346 billion coming from the federal government and the remaining $204 billion from States.
   
   
9. Nationwide, more than $4 billion in Medicaid goes to schools, or roughly 1 percent of all Medicaid.