Living and Dying on Medicaid [UPDATED]

UPDATED, Aug. 15, 2018, 3 p.m. ET: The local news story on which this post is based was published in August 2017, not 2018. We regret the error.

Here is a story about profiteering and neglect in American healthcare, reported in devastating detail by the Des Moines Register.

Todd Mouw, a 53 year old man who lived in Iowa, died on July 8. He was married to Cyndi Mouw; he helped organize meals for needy people in his county with his family; and he was a quadriplegic, paralyzed 32 years ago after an accident. He couldn’t breathe on his own and needed round-the-clock care, but he lived for years and years at home, with care workers provided by Medicaid, until that care was slowly taken away by the for-profit company that has run his plan in Iowa since 2016.

Todd died just four months after these administrative problems started, after being forced to leave his home and spend his last weeks in a respiratory facility; in the weeks before that move, the care provided by the company was spotty, meaning sometimes he would be left alone until he was “nearly unresponsive because the passageway of his trachea tubes needed to be cleared of mucus buildup,” according to the paper. Sometimes, he was without oxygen for so long that he turned blue.

Other Medicaid patients with disabilities in Iowa are suing Governor Kim Reynolds over lack of care. According to a lawsuit against the governor and her Department of Human Services head, when Iowa’s Medicaid services were turned over to the for-profit companies in 2016, the “plans claimed that they had lost too much money on their Medicaid contracts.” As a result, they allege the companies “began cutting these members’ necessary home and community-based services without any significant changes to their health needs.” This is what happened to Todd Mouw in March, according to the Register:

Although some of the health provider firms and their employees had for nearly two decades provided Mouw’s care and equipment, Amerigroup said they no longer considered the workers qualified.

Amerigroup instead required registered nurses to provide some of the services that had for years been provided by home-health aides.

The requirement for higher-qualified staffing left the family scrambling for months to find workers Amerigroup would approve for payment.

When Cyndi Mouw thought she had identified potentially qualified workers, she said weeks of administrative delays resulted in repeated missed care for her husband.

In the months that followed, Todd Mouw would sometimes go unsupervised because no staff had been approved to provide care for him, Cyndi Mouw said.

Todd Mouw got pneumonia in May, and after his hospitalization, he “was never able to return home for lack of in-home workers,” according to the paper. That’s when he was sent to the facility where he died in July. Cyndi told the Register she believes he received better care there because his longtime caregivers were more aware of his needs. She also said he was happier at home. Of course he was.

Healthcare is about more than keeping people alive. It’s also about giving them more time with their families, and more quality time. Half of healthcare is health and half of it is care: It is about whether we care about people, their lives, their families, their needs, their preferences. Did Iowa care if Todd Mouw could stay at home with his wife? It did not, or at least it cared less about that than it did about letting a for-profit company extract profits from the sick, those with disabilities, and the poor. Amerigroup’s parent company, Anthem, made profits of $1.2 billion in the fourth quarter of 2017; they paid an effective tax rate of 3.1 percent. I hope it was worth it.

Implementing single payer isn’t in itself a silver bullet solution to providing uniformly quality care. Above all else, it would involve constant pressure to ensure that the right treatments are available if they’re the right ones and not snatched away because they cost too much. But that is exactly what is happening right now under our for-profit healthcare system, which we’re told is the only way to prevent European-style socialism and death panels. Right now, people with disabilities in Iowa are fighting with the private companies that have been entrusted to act as stand-ins for their elected government in dispensing the care everyone deserves. Countless hours are being spent by people whose lives are already harder than every healthcare executive with a fat paycheck and every uncaring politician who has forgotten who they serve, fighting for their lives in the battlefield of endless, degrading, miserable back-and-forth with the companies that run Iowa’s Medicaid now. These fights will always happen when a corporation—bound by fiduciary duty, the logic of capitalism, and pure greed—is involved in healthcare. Someone will get screwed, and it will never be their CEO.

Todd Mouw died. We can’t say for sure whether it was because he lost the healthcare workers who understood his needs best when they were deemed too expensive by Amerigroup. We can say for sure that the state of Iowa should investigate those decisions immediately and do everything to remove private involvement in its Medicaid plans as quickly as possible. It is too late for Todd and Cyndi, but there are thousands more who can still be helped.