With their attempts to end Obamacare and Medicaid, the Trump administration is effectively sentencing the disabled and chronically ill to unnecessary pain and suffering.
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It was a shocking scene.
A young woman in a wheelchair, her hands zip-tied behind her back like a criminal, screamed, “Kill the bill, don’t kill us!”
The fear in her voice, her face unseen by the camera, should have sent a frisson of outrage through anyone watching.
It did not affect the president nor the Republican-led Congress.
Between June and December of 2017 scenes of women with assistive devices, men with disabilities crawling up the steps of the Capitol on hands and knees, parents pushing children on ventilators in wheelchairs or on gurneys spread across the evening news, all protests of the Republican-led, Trump administration-directed moves to repeal and replace Obamacare and radically cut back access to Medicaid and Medicare. Lives—their lives—the protesters asserted, were being put at grave risk. How would anyone with a pre-existing illness or disability survive without the provisions set forth in the Affordable Care Act (ACA)? Mandates that insurers cover pre-existing conditions would be gutted. GOP plans would sunder provisos granting Medicaid for those unable to access a subsidy from the health-care marketplace because their income was at the poverty level or they were too incapacitated to work. There were dozens of protesters every day representing the country’s largest, yet most invisible minority: disabled and chronically ill Americans.
According to the Centers for Disease Control (CDC) as well as the U.S. Census, one in five Americans has a disability. Some have more than one. Overlapping that daunting figure of 53 million disabled people is an even more stunning number: 133 million Americans suffer from chronic, disabling illness. If those numbers are too vast to personalize, imagine Jimmy Kimmel’s son born with a life-threatening heart defect. Kimmel’s tearful monologue days after his newborn had life-saving surgery demanded that all children get the same care his child could afford because his parents are wealthy celebrities. Another 40,000 babies are born with similar heart defects each year. What about them?
A half-million children have epilepsy and constant seizures. Soccer hall-of-famer David Beckham and his fashion-designer wife, Victoria, have a son born with the disease. Two million children have autism, one of the most common disabilities among children. Singer Toni Braxton, actress Holly Robinson Peete, and Rosie O’Donnell are among many celebrity parents who have children on the autism spectrum.
Celebrities and other wealthy Americans will always have access to the best care. But for the other 99 percent, things can be bleak. When Angelina Jolie chose to have a double mastectomy in 2013 after discovering she had the BRCA1 cancer gene, she was able to choose the best surgeon, have immediate breast reconstruction that also saved her nipples, a luxury many mastectomy patients are not afforded. Two years later she had her ovaries removed.
When women without Jolie’s means discover they have the BRCA1 gene that predisposes them to both breast and ovarian cancer, the options are far more limited. Bilateral prophylactic mastectomy and oophorectomy are covered by most top-tier health insurance plans if the cancer gene is detected. But the question of reconstruction is far more vague. The Women’s Health and Cancer Rights Act of 1998 requires all group health plans that pay for mastectomy to also cover prostheses and reconstructive procedures. But this does not cover individual plans such as those accessed via the health-care marketplace under the ACA. Medicare covers breast reconstruction, but Medicaid coverage varies from state to state. Government- and church-sponsored plans are not required to cover reconstruction. The cost of breast reconstruction will vary from facility to facility and surgeon to surgeon, but according to the American Society of Plastic Surgeons, the average cost for such reconstruction is about $10,000.
The heart surgery Jimmy Kimmel’s baby had right after he was born is expensive. The price of a congenital heart surgery admission for pediatric patients was $92,529, but researchers reported costs for surgeries for the majority of infants due to the level of defect to be $213,803. Jimmy Kimmel’s baby survived and did well. But such, sadly, is not always the case.
According to data obtained by CNN from the Society of Thoracic Surgeons, death rates range from 1.4 percent to 12.1 percent for babies undergoing heart surgery as newborns. Yet that exorbitant bill for a baby’s care must be paid regardless of the outcome.
The costs of care continue to rise exponentially, which is why the clamor for universal health care has gotten louder in recent years. Some care is more costly than others. Most Americans of all ages will end up in the emergency room at some point, whether for a broken bone, a bad flu or something far more serious. According to a nationwide study by the Johns Hopkins School of Medicine, published in the Journal of the American Medical Association Internal Medicine, those visits are costly and more and more of that cost falls on the consumer, with hospitals charging anywhere from 1.0 to 12.6 more what will be covered by Medicare, Medicaid or private insurance.
Putting a face to disability is what activists have tried to do, but during the protests at the Capitol, Senate Majority Leader Mitch McConnell ordered Capitol police to arrest the protesters, leading to those images of disabled people being handcuffed and in many cases physically carried to waiting police vans.
The protests coincided with an alert from the CDC. At the end of June 2017, the CDC issued an overview of “the growing crisis of chronic disease in the United States” as the “leading cause of disability and death.” Yet the Republican-led Congress met that alarming report by stepping up efforts to limit access to health care for the very people the CDC was asserting needed more and better care, not less.
That this is indeed a crisis which cannot and must not be minimized. That things have gotten dramatically worse since January has been eclipsed by other drama in the Trump White House, from indictments of former staffers to resignations of key aides to revoking of security clearances.
Those who claim Trump plays four-dimensional chess while it’s thought he can barely manage checkers, point to the healthcare crisis as an example. Since Donald Trump took office on January 20, 2017, he has led a concerted effort to end the ACA and radically cut back Medicaid and Medicare. That Trump campaigned on preserving the best aspects of the former and the entirety of the latter has proven, like so many other promises made about his presidency, to be false.
Last summer activists were able to stop the repeal and replace bills written in both the House and the Senate by the slimmest of margins: the final Senate vote was 51-49. But like swatting at wasps’ nest with a broom, the failure of congressional GOP leadership to complete the job Trump had tasked them to do only served to infuriate both the president, who is easily riled by not getting his way, and McConnell and Speaker of the House Paul Ryan.
The next bill to come before Congress would pass, if narrowly. And within that bill, the Tax Cuts and Jobs Act of 2017, lay the evisceration of the ACA: repealing the mandate requiring everyone in the U.S. have health-care coverage or pay a fine. Such mandates are common in the insurance industry. You can’t get a mortgage without homeowners insurance. You can’t own and drive a car without car insurance. Without the mandate, which had already been upheld twice by the U.S. Supreme Court, the Congressional Budget Office declared premiums would skyrocket for the sickest Americans—those people least able to afford to pay.
And that is exactly what has happened.
On December 20, 2017 the tax bill passed the Senate, again by the slimmest of margins (51 to 48) but this time in the Republicans’ favor. In January, health-care companies, buoyed by both a generous corporate tax rate cut from 35 percent to only 21 percent and the evisceration of the mandate, began exploding premiums across the country that has left the sickest Americans and their families reeling.
According to the health-care marketplace itself, which provides all the data for consumers from which to choose the best and most affordable plans, a large percentage of premiums nearly doubled between the 2017 costs in December and the 2018 costs for the same plans in January. In Georgia, that number was 57 percent. In Florida, which has the largest demographic of people over 50 who are most likely to have pre-existing conditions like Type-2 diabetes, premiums rose by 45 percent. Most troubling for consumers was the timing. The Trump administration narrowed the window to apply to the marketplace for new healthcare plans from three months under President Obama to six weeks. Advertising was ended, leading many to believe the ACA no longer existed. Weekend sign-ups were cancelled. The final day to apply to register for a plan or to change an existing plan was December 15, 2017.
The tax bill passed December 20.
No one knew how much their health insurance premium would cost come January. But in a cruel twist, the ACA still enforced the open enrollment period: No one can change plans before November. Imagine agreeing to buy a car for $20,000 in December, but when you went to pick it up in January, it suddenly cost $80,000—and you were legally obligated to pay that amount. That’s an accurate analogy to how premiums ballooned for consumers. No one could foresee how bad it would be because Trump kept insisting “it will be great,” asserted Americans would benefit.
Murderous is the word disability-rights activists use for the various actions of the Trump-led GOP. But leading voices in Congress have echoed those claims. House Minority Leader Nancy Pelosi and Sen. Bernie Sanders have been the most vocal on the issue. Sanders was emphatic, citing the CBO reports numbers: “When you throw 23 million people off of health insurance—people with cancer, people with heart disease, people with diabetes—thousands of people will die,” Sanders said. Though many called Sanders’s claim—one also made by Pelosi—hyperbolic and fear-mongering, the non-partisan PolitiFact declared his assertions true.
And now we are there, with millions of lives hanging in the balance and Republicans have taken to taunting sick people. Attorney General Jeff Sessions said the answer to opioid addiction, which has risen among people with chronic illness, is simple: “Sometimes, you just need to take two Bufferins or something and go to bed.”
Senator Orrin Hatch was forced to apologize March 3 for saying that people who support Obamacare are “the stupidest, dumb-ass people” he had ever met. And White House senior counsel Kellyanne Conway has asserted that too many people are on Medicaid because of Obamacare and they should find jobs that pay for their health insurance, that Medicaid should be strictly for the disabled, elderly and sick.
As with nearly everything proposed by Trump and/or the GOP, women are being hit hardest by these facile claims and draconian measures. In 2016, the American Journal of Public Health released a study on the gendered nature of disability. This study supported a similar 2012 study from the State Farm Center for Women and Financial Services at The American College which found that “whether they’re working or a stay-at-home mom, single or married women are most at risk both physically and financially when it comes to disability.” And while the 2012 study asserted women of all ages, races, and economic strata were at higher risk of disability than men, the 2016 study centered on older women. Economic status exacerbated disability.
According to the AJPH, “While women have a longer life expectancy than men, the number of years they spend with disability cancels out the quality of those extra years,” with women unable to attend to basic functions from getting out of bed to getting dressed to shopping for groceries.
“Despite the fact that women live more years than men, they can expect fewer active years,” said Vicki A. Freedman, a research professor at the Institute for Social Research at the University of Michigan, and lead author of the study. “Older men have been living longer and experiencing disability at later ages than they used to, while older women have experienced smaller increases in life expectancy and even smaller postponements in disability.”
Jen’nan Read, an associate professor of sociology and global health at Duke University who was not involved in the study, has authored research on similar topics. “As the population is aging, and women are more likely to live longer, it has huge implications for [women’s] quality of life. They live longer and have poor quality of life years and also tend to be less likely to have the social and economic resources to deal with these problems,” Read said.
That men’s rates of disability have decreased while women’s have risen is a worrying trend in this political climate. Complicating this is the rate of chronic illness among women versus men, which is also much higher. Autoimmune diseases strike women more often—rheumatoid arthritis, Type 1 diabetes, multiple sclerosis, Crohn’s disease, sickle cell anemia, Sjögren’s syndrome—all impact women most. Nine out of ten people with lupus and fibromyalgia are women. Women are four times as likely to get migraines as men. Some diseases like endometriosis only affect women. Factor in the social role of women as primary caregivers to children and elderly parents and the impact of decreased access to healthcare becomes a template for economic and social disaster.
In January Trump decided people on Medicaid should work more and proposed a program that was ostensibly workfare: new eligibility requirements for Medicaid, including forcing many recipients to work, look for work, or volunteer in order to qualify for government health coverage, a dramatic shift in the 50-year-old program.
This measure would radically impact mothers who must stay home with a severely disabled child who needs constant care. Natalie Weaver, co-founder of Advocates for Medically Fragile Kids, is one of those women. She has a large social media presence and advocates for disabled children locally and nationally. Weaver’s daughter Sophia has severe facial deformities and Rett Syndrome, which impairs brain development. Sophia has had 22 surgeries, has a feeding tube, a colostomy bag. She has seizures and choking spells because of both the deformities and the Rett Syndrome.
How can parents of children with such severe disabilities work in addition to providing that care? What of the parent with children with autism who homeschools her kids because a school setting is too challenging for them?
And yet the Trump-GOP juggernaut moves on. On February 15 the House passed HR 620, which would radically alter access points in the Americans with Disabilities Act. The bill is currently awaiting passage in the Senate. Trump has also pushed short-term “junk” insurance plans to younger, healthier Americans. These bare-bones plans are not offered by regulated insurance companies but by other business models. As Andy Slavitt, the former head of Medicaid and Medicare under Obama, wrote in USA Today on March 5, these plans just further undermine ACA. “They are called junk plans because they allow insurance companies to deny coverage to people with pre-existing conditions, exclude expensive conditions, and place caps and lifetime limits on policies. To skirt ACA protections, the Trump administration is turning to short-term policies that don’t have to meet the law’s requirements. They’re now proposing to define short-term as less than 365 days—say 364, up from the current 90.”
As bad things have gotten, it can still get much worse. “Trump has decided to keep ripping apart the law, with or without Congress,” wrote Slavitt. “With help from Republicans, he has spent the last year taking actions that increase premiums. He cut off payments designed to reduce deductibles and co-payments, eliminated the individual mandate that broadened the risk pool and kept costs down, and reduced outreach to younger and healthier populations. An Urban Institute study found that junk insurance plans, along with the end of the individual mandate, will cause an 18% increase in premiums for plans that meet ACA requirements.”
In 1965, Lyndon Johnson signed Medicaid and Medicare into law, a contract with America to protect the poorest, sickest and most vulnerable citizens. Trump and his cohort in the Republican-led Congress want to break that contract. It’s up to voters to stop them—our lives depend on it.