Health and Disability

The hospital industry has a warning for President-elect Donald Trump and congressional leaders: Eliminating the Affordable Care Act without first crafting a “replacement” would create major hardships throughout the health care system.

Hospitals traded billions of dollars in Medicare and Medicaid payment cuts for expanded health coverage under the Affordable Care Act, reasoning it would be good for hospital finances to have fewer uninsured patients who don’t pay for their care. Congressional Republicans are leaning toward a plan that would repeal the law early next year, but delay enacting a new system for up to three years.

That won’t work, according to two influential hospital lobbying groups.

The American Hospital Association and the Federation of American Hospitals laid out their concerns in letters sent Tuesday to Trump, Vice President-elect Mike Pence, House Speaker Paul Ryan (R-Wis.), House Minority Leader Nancy Pelosi (D-Calif.), Senate Majority Leader Mitch McConnell (R-Ky.) and Sen. Chuck Schumer (D-N.Y.), who will become minority leader next year.

These groups are demanding that legislation repealing the law and creating an alternative pass simultaneously, or that Congress and the incoming Trump administration restore the funding cuts from the law.

Hospitals will be seriously threatened if neither action occurs, Tom Nickels, executive vice president for government relations and public policy, said Tuesday during a conference call with reporters.

The nation’s health insurers, resigned to the idea that Republicans will repeal the Affordable Care Act, on Tuesday publicly outlined for the first time what the industry wants to stay in the state marketplaces, which have provided millions of Americans with insurance under the law.

The insurers, some which have already started leaving the marketplaces because they are losing money, say they need a clear commitment from the Trump administration and congressional leaders that the government will continue offsetting some costs for low-income people. They also want to keep in place rules that encourage young and healthy people to sign up, which the insurers say are crucial to a stable market for individual buyers.

The demands are a sort of warning shot to Republicans. While the party is eager to repeal the law as quickly as possible, and many have promised a replacement, its members are sharply divided over what shape any new plan should take. If they do not come up with an alternative, more than 22 million people would be left uninsured, including the more than 10 million who have bought individual plans on state marketplaces.

More than 1 billion people on the planet suffer from illnesses that the world pays little attention to.

Neglected tropical diseases are a group of at least 18 diseases that primarily affect people living in poverty in tropical regions of the world and are virtually unknown elsewhere, according to the World Health Organization.

These are diseases like river blindness, which has infected 18 million people worldwide and caused blindness in 270,000 people; or elephantiasis, a leading cause of disability worldwide, which affects over 120 million people and can cause severe swelling of the body parts, usually the legs or the scrotum.

While only some of these illnesses can be fatal, many of them can cause lifelong disabilities or disfigurement. And even though many neglected tropical diseases are preventable and treatable, getting proper medical care to the people who are most vulnerable can be challenging, as the diseases primarily affect people in high-poverty communities with limited access to health services.

“Because they are a threat only in impoverished settings, they have low visibility in the rest of the world,” WHO Director-General Margaret Chan says in a 2010 report. “While the scale of the need for treatment is huge, the poverty of those affected limits their access to interventions and the services needed to deliver them.”

D

oris, 90, is prodding at a colourful image of a beach ball projected on to the table in front of her. She sends it wheeling off towards Don, who sweeps at it, bouncing it back. William taps at the image while Cathy watches intently, occasionally reaching out a hand. Doris giggles, Don grins, Cathy smiles gently. William is concentrating hard.

This is significant. All four are “difficult” or “withdrawn” residents with dementia at Care UK’s Oak House care home in Slough, Berkshire. They are playing with a Tovertafel (Magic Table), a series of interactive light games specifically designed for people with mid- to late-stage dementia, which has newly arrived in the UK.

The staff are smiling too. “It’s nice to see engagement and eyes lighting up,” says care home manager Julie Bignell. “Doris can be very difficult and she’s having a lovely time. And it’s hard to persuade Don to sit down. Now he is, and he is really animated playing with that ball.”

“William gets very angry and aggressive,” says his care worker, “so to get him to sit calmly for this long is great.” 

It gives me goosebumps when I see residents with grandchildren they’ve been unable to communicate with playing together.

John Ramsay

The game changes, bringing flowers floating across the table. Lily strokes one of them and it grows into a huge bright bloom. She starts talking about flowers. Then goldfish come swimming along and Lily makes them appear to swim up her arm. “My mother would love this,” she says. “Where can I get one? Can I put down a deposit?” 

Tovertafel was developed in the Netherlands and has taken the region by storm. Launched only in March 2015, there are already 500 Tovertafels installed in care homes in the Benelux countries. It got its name from someone with dementia who announced when trying it that “this is a magic table”.

Here’s some of the shocking evidence with respect to the marketing of antipsychotic drugs such as quetiapine (Seroquel) and risperdone (Risperdal) to elderly people with dementia such as Alzheimer’s disease:

On April 27, 2010, as mentioned in Oliver’s piece, AstraZeneca LP and AstraZeneca Pharmaceuticals LP was ordered to pay $520 million to resolve allegations that it illegally marketed the anti-psychotic drug Seroquel (quetiapine) for uses not approved as safe and effective by the United States Food and Drug Administration.

Specifically, it marketed the drug for uses that were not FDA improved including aggression, Alzheimer’s disease, anger management, anxiety, attention deficit hyperactivity disorder, bipolar maintenance, dementia, depression, mood disorder, post-traumatic stress disorder, and sleeplessness.

According to the settlement agreement:

“AstraZeneca targeted its illegal marketing of the anti-psychotic Seroquel towards doctors who do not typically treat schizophrenia or bipolar disorder [for which the drug had FDA approval], such as physicians who treat the elderly, primary care physicians, pediatric and adolescent physicians, and in long-term care facilities and prisons.” (Italics mine.)

In April 2014, a joint CBC/Canadian Press report revealed the widespread inappropriate use of quetiapineas a “sleeping aid” for female inmates in the Canadian prison system. When I read it, I was struck by the parallels between subduing women in prison and sedating vulnerable elderly people with dementia using quetiapine.

Differentiating characteristics of CRPS

There are other characteristics of CRPS that set it apart from other pain conditions. For instance, if a patient's view of their limb is magnified, the pain and swelling intensify, and, conversely, if their view of the limb is minified, the pain and swelling subsides.

Also, if the patient cannot see their limb, performance of simple motor tasks is significantly impaired. The condition is clearly complex and involves both central and peripheral nervous systems.

CRPS can occur in anyone at any age, although it is more common in women; it rarely occurs in children under 10 and the average age of onset is 40.

Many individuals will recover over time, but some do not recover at all and the condition can be debilitating.

Although 90 percent of CRPS cases are preceded by an injury, it is not clear why only certain people develop the condition. The most common triggers are fractures, limb immobilization (for instance, being in a cast), sprains and strains, soft tissue injury (such as cuts, bruises, or burns), or surgical procedures.

The study involved 13 individuals with upper-limb CRPS (all females, aged 31-58) and 13 healthy control subjects, matched by sex and age. They analyzed functional magnetic resonance images (fMRI) taken as the participants watched videos of movements - for instance, a hand squeezing a ball with maximum force.

As these actions were observed, brain scans from individuals with CRPS showed abnormal patterns in certain brain areas compared with the controls.

In particular, the following brain regions reacted significantly differently between the two groups:

• Hand representation area in the sensorimotor cortex - the part of the brain that deals with motor and sensory information for that particular part of the body
• Inferior frontal gyrus - used when observing actions
• Secondary somatosensory cortex - normally activates in response to pain, light touch, visceral sensation, and when focusing on a particular tactile sensation
• Inferior parietal lobule - involved in interpreting sensory information
• Orbitofrontal cortex - thought to be involved in sensory integration and pain modulation
• Thalamus - processes and relays most sensory information as it enters the body.

The authors conclude: "Our findings indicate that CRPS impairs action observation by affecting brain areas related to pain processing and motor control."

Although this discovery is just a small step along the way to understanding CRPS, because so little is known about the condition, all information we can gleam is vital.

Medicaid covers about 73 million people nationwide.  Jointly financed by the federal and state governments, states have substantial flexibility to administer the program under existing law.  Medicaid provides health insurance for low-income children and adults, financing for the safety net, and is the largest payer for long-term care services in the community and nursing homes for seniors and people with disabilities.  President-elect Trump supports repeal and replacement of the Affordable Care Act (ACA) and a Medicaid block grant. The GOP plan would allow states to choose between block grant and a per capita cap financing for Medicaid. The new Administration could also make changes to Medicaid without new legislation.

1. HOW WOULD ACA REPEAL AFFECT MEDICAID?

A repeal of the ACA’s coverage expansion provisions would remove the new eligibility pathway created for adults, increase the number of uninsured and reduce the amount of federal Medicaid funds available to states. The Supreme Court’s 2012 ruling on the ACA effectively made the Medicaid expansion optional for states. As of November 2016, 32 states (including the District of Columbia) are implementing the expansion.  The full implications of repeal will depend on whether the ACA is repealed in whole or in part, whether there is an alternative to the ACA put in place and what other simultaneous changes to Medicaid occur. However, examining the effects of the ACA on Medicaid provide insight into what might be at stake under a repeal.

What happened to coverage? The ACA expanded Medicaid eligibility to nearly all non-elderly adults with income at or below 138% of the federal poverty level (FPL) – about $16,396 per year for an individual in 2016. Since summer of 2013, just before implementation of the ACA expansions, through August 2016 about 16 million people have been added to Medicaid and the Children’s Health Insurance Program.  While not all of this increase is due to those made newly eligible under the ACA, expansion states account for a much greater share of growth. States that expanded Medicaid have had large gains in coverage, although ACA related enrollment has tapered.  From 2013 to 2016 the rate of uninsured non-elderly adults fell by 9.2% in expansion states compared to 6% in non-expansion states.

What happened to financing? The law provided for 100% federal funding of the expansion through 2016, declining gradually to 90% in 2020 and beyond. Expansion states have experienced large increases in federal dollars for Medicaid and have claimed $79 billion in federal dollars for the new expansion group from January 2014 through June 2015.  Studies also show that states expanding Medicaid under the ACA have realized net fiscal gains despite Medicaid enrollment growth initially exceeding projections in many states.

What other Medicaid provisions were in the ACA? The ACA required states to implement major transformations to modernize and streamline eligibility and enrollment processes and systems.  The ACA also included an array of new opportunities related to delivery system reforms for complex populations, those dually eligible for Medicare and Medicaid and new options to expand community-based long-term care services.......

When your child is medically fragile, you often end up in the hospital at some point, and it can be overwhelming for both you and your child. Here are six ways we advocated for our child that helped us when she was admitted to the hospital:

1. Don’t accept any treatment plan without a reason.

The first time we were admitted to the ICU we not only made them explain why they were suggesting certain treatments but also what the other options were. We were able to learn about our daughter’s medical care and what it meant to her condition.

2. Always attend rounds.

This is where decisions are made and ideas and concerns voiced by all parties. There are often specialists and nurses present. Don’t be afraid to ask questions. You are part of your child’s care team. It also helps to discuss your goals with your nurse ahead of time so that they can help advocate for them.

3. You don’t have to click with everyone.

As in every job there are people who do things their own way. Every nurse, respiratory therapist, X-ray technician and phlebotomist will be different, and if someone is being difficult, then it’s within your rights to complain. You may have to speak with their supervisor who will encourage you to work together. It usually gets the job done.