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How One Father Isn’t Letting the Healthcare System Forget About His Son

June 27, 2019
In The News

“You see this train wreck coming right in front of you and there’s not a damn thing you can do to stop it.” Those were the exact words Scott Desnoyers told his son Aiden just two days before his other son, Daniel, died by suicide.

On April 9, 29-year-old Daniel Desnoyers tweeted about his ideations; rescue workers responding to the scene of his death believed it was intentional.

“When Danny tweeted out his goodbye note, I saw it like, one minute after he tweeted it,” Scott told MTV News, his voice cracking as he recounted that morning. At the time, Scott sprang into desperate action and drove to nearby Saratoga Lake in upstate New York. Daniel wasn't there. “I jumped into my car hoping I could save him if I got down there quick enough, not knowing that I was at the wrong water.”

A father of two from Saratoga County in upstate New York, Daniel had moved back in with his dad after a falling out with the mother of his children. The following custody dispute fueled his depression, according to Scott, but Daniel tried to address it.

“We take our medicine together every night,” Scott said about his family. “So we made sure Danny took his medicine with us every night.” Daniel tried to stay upbeat, too, his father added, even while navigating a number of stressful situations at once.

While Daniel’s death will be recorded as another heartbreaking statistic in the increasing American suiciderate, his life illustrates an all too-common systemic failure by the U.S. health care system. According to Scott, his son had lost his health insurance coverage and subsequently, his access to antipsychotic medication two weeks before his passing — he had missed a $20 premium payment to his insurer, Fidelis Care.

According to the 2013 Medical Expenditure Panel Survey, 1 in 6 Americans take a psychiatric drug, with 1.6% of the population taking an antipsychotic. While the uninsured rate initially fell with the implementation of the Affordable Care Act, the total number of uninsured Americans rose by nearly 700,000 in 2017 compared to the year before, the Kaiser Family Foundation reported. Additionally, the foundation found that 45% of uninsured people in the U.S. cited the high cost of health insuranceas their primary barrier to access. The average premiumfor an individual ACA plan in the U.S. before factoring in any subsidies was $477 per month in 2019. In New York, where Daniel lived, that average premium is $506 per month.

In early February, around that same time Daniel moved back in with Scott, Fidelis mailed a notice regarding the outstanding $20 premium balance to his old address. Daniel never received it, only realizing his insurance had lapsed when he tried unsuccessfully to refill his $250 medication in late March.

Fidelis Care covers over 1.7 million people throughout New York state, according to its website. Among its coverage options are ACA exchange plans as well as managed Medicaid care plans, set up through a partnership with the state. According to Scott, Daniel had a managed Medicaid plan.

In a statement to MTV News, Fidelis Care expressed condolences to Daniel’s family but defended its policies on missed premium payments. “Fidelis Care takes the health of members very seriously,” the statement read. “While we are unable to comment on individual members due to privacy regulations, we can say that for members who have a monthly premium, Fidelis Care provides approximately 60 days (including a grace period) to make their payment; offers a variety of payment options to make the process as easy as possible; and takes several steps – including personal phone calls, letters, and emails - to remind members about the importance of making their monthly premium payment on time and help them keep their coverage without interruption.”

That explanation isn’t good enough for Scott. “I hear people say, ‘Well, he could have gotten a part dosage, he could have gotten this, he could have gone here.’ Yes, he could have done a lot of things,” Scott said, noting that his son had gotten four different jobs in the last month of his life to try to make ends meet. None of the jobs offered immediate health care coverage.

“He was fighting. He was fighting for everything he had,” Scott said.

Daniel was taking the antipsychotic medication Resperidone, which is often prescribed for schizophrenia. Studies have warned against stopping the medication suddenly, as a return of schizophrenic symptoms added with withdrawal symptoms can cause a significant and risky chemical imbalance in the brain.

In the wake of his son’s death, Scott has turned to activism against the system he says took his son’s life. Scott had conservative views on healthcare before, but years ago, he encountered repeated health issues and was exposed to the realities of free market healthcare. “This private for-profit system that demands money for life killed my son. I can’t allow that,” he said. “I’ll take them beating the shit out of me every day but not my kids. They can’t do this to my kids.”

In frustration and anger, Scott began tweeting out his son’s story and was met with thousands of responses from folks with similar stories. For Scott, there’s a very obvious political solution to preventing more deaths: Medicare for All. Daniel’s story has now caught the attention of lawmakers. Presidential candidate Senator Bernie Sanders (I-VT) shared Scott’s story as did Rep. Ilhan Omar (D-MN). Rep. Ro Khanna (D-CA) made a speech about Daniel’s story on the House floor while advocating for Medicare for All, which would extend Medicare access to everyone in the US, replacing private insurance plans.

“[Under Medicare for All], you get basic health care coverage from the day you’re born and in Daniel’s case it would have meant that he would have had health care coverage to go see a doctor,” Khanna told MTV News. “He would have had health care coverage to be able to get the medicine that he needed and there would not have been a lapse. This situation would never have arisen and there’s no reason that we can’t have Medicare for All.”

There’s significant resistance to Medicare for All across all parties, even though there have been two House hearings on the measure during this legislative session and the leading bill thus far has over 100 cosponsors in the House and 20 in the Senate. “The challenge is that we got to first have to have a president that is committed to it because a president can shape the public debate,” Khanna said. “That’s why I think it’s so important to have our Democratic nominee be for Medicare for All.”

In the meantime, Scott Desnoyers vows to keep fighting. “I promised him at his funeral and I promised his siblings that I would be on the Senate floor myself addressing our lawmakers,” he said. “This is a promise that I can’t break.”

Two weeks after Daniel’s funeral, Scott received a notice from Fidelis Care indicating that his son’s insurance coverage had been restored. It was too late.