Scott Desnoyers says his son died because of $20 and Amy Sterling Casil was charged $50,000 after her baby died – they are among many Americans sharing their stories about the health system
Lucy Anna GrayNew York @LucyAnnaGray
Daniel was 29 when he died. He killed himself after failing to get his medication refilled because he missed a $20 premium he was not aware of.
“I promised his siblings and him at the funeral in front of everyone that I was going to make our lawmakers look me in the eye and see the consequences of their decisions,” his father, Scott Desnoyers, tells The Independent.
One of America’s worst kept secrets is just how flawed its healthcare system is.
The US has some of the best doctors and facilities in the world – but accessing them for many is a constant battle. Millions of Americans are uninsured, and high deductibles mean even those that have it often struggle to pay for treatment and medications. “Surveys show that many Americans with insurance are forgoing needed care because of cost,” Bob Doherty from the American College of Physicians (ACP) says. “Surveys also show that concern about not being able to afford care ranks among the top concerns of the public.”
Among the poorest 20 per cent of Americans, one-third of their income is spent on healthcare, according to a new study. Out of pocket payments have grown over recent years, and nearly half of millennials have put off needed medical care because they can’t afford it.
In March 2019 Daniel Desnoyers from Saratoga, New York, tried to get his prescription of Risperidone refilled, which helped manage his mental health issues, but he couldn’t. He told his father that day: “Pops I know I need this medicine!”
Daniel called his provider – Fidelis Care – at the beginning of April and found out that he had missed a $20 premium. “He paid his $20 on the phone that day and was told his ‘plan’ would be reinstated on the next billing cycle of May 1st,” his father says. “On April 9th I saw his Facebook post only seconds after he posted it.”
The post in question was a heartbreaking suicide note from Daniel, suggesting he was going to drive his car into a lake. Scott rushed to stop him, but was too late.
Daniel Desnoyers died in 2019 aged 29
When asked to comment on the case, a Fidelis Care spokesperson said: “We were deeply saddened to hear of Mr Desnoyers’ loss, and our hearts go out to the family.” The multi-billion-dollar company says they take the health of members “very seriously” but were unable to comment on Daniel’s case specifically 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.”
Mr Desnoyers has channelled his grief into political action. From attending rallies to lobbying lawmakers, speaking at public hearings to being active on social media, he does all he can to share Daniel’s story.
The now 50-year-old first made contact with the Bernie Sanders campaign after a post about his son was shared thousands of times on Twitter, and someone who worked for Texas Democrat Sema Hernandez got in touch with him. “Before Bernie I was not aware that other countries had universal care. I had bought all the media bulls*** and thought, this is America, we have the best of everything including healthcare.” Now Mr Desnoyers campaigns regularly for Medicare for All, and says his “entire life from the time I get woken up at 3am almost every day” is dedicated to the fight. “This fight is all I can do for Danny now.”
The Bernie Sanders campaign is an electrifying movement – regardless of what you think of his policies. An engaged left show up in their thousands at rallies, with many sharing their personal stories online in an attempt to galvanise movements.
Sanders is not the only 2020 presidential candidate backing Medicare for All. Elizabeth Warren also supports it, but with a slight difference. Whereas Bernie Sanders would prohibit private plans after a brief transition period, Warren’s plan would offer a public option alongside existing private insurance plans before passing Medicare for All in her third year as president.
A November poll found that 53 per cent of voters support a Medicare for All plan that would cover everyone through a single government plan. However, 65 per cent said they support a government-run health plan that would compete with private insurance. The same poll found that Senator Sanders, who has long championed Medicare for All, is the most trusted candidate on healthcare among voters under 34, at 47 per cent. Joe Biden, however, was the most trusted candidate among senior voters.
There is resistance to Medicare for All, with questions surrounding cost estimates and people with effective insurance not wanting to give it up among the criticisms, but the tide seems to be turning.
The American Medical Association (AMA), the largest physician group in the United States, last year left the Partnership for America’s Health Care Future, an industry opposing Medicare for All, and the ACP – America’s second-largest physician group – recently backed Medicare for All.
Joe Kassabian from Michigan was won over by Bernie Sanders after his family’s traumatic difficulties with affording healthcare. The 31-year-old, who served two tours in Afghanistan, says his family “nearly lost everything” because of having to pay approximately $100,000 for his sister’s kidney treatment. His mother, who was a single parent working two jobs, did not have health coverage through her work. During this time Mr Kassabian would only eat once a day on weekends, twice on school days because of free lunches. “We did not have birthdays or Christmas. After school activities had to be stopped so we could all get whatever jobs we could in order to help out. It led me to enlist in the US Army when I was 17 so I could send more money home.”
He says they were forced to leverage the house and car to pay for the treatment. “If she had required a transplant we would have been on the streets.” Thirteen years later and the debts are still not paid off.
Mr Kassabian heard about Bernie Sanders after leaving the army, and, once he found out more about him, decided to support him as “one of the few politicians in the US that actually seems like he gives a s***”.
“I believe Medicare for All is the only way forward ... Our current system deems those with more money or better jobs more deserving of life and health.”
Janet Mullen, 49, actually did lose her home in Massachusetts after struggling to pay $75,000 out of pocket.
Ms Mullen – also known by her online persona ‘Lumpy Louise’ – suffers from a rare disorder called Dercum’s disease, among a range of other health ailments and conditions. “Even when I was actively working and on insurance ... I had $75,000 in out of pocket expenses just for my treatments and medicines.” After trying various different loans she ended up losing her home of 12 years, eventually quitting her job and filing for disability. “I’m almost 50 and my husband and I cannot afford to live on our own.”
Some do manage to avoid extortionate costs billed to them, such as Amy Sterling Casil, who was charged $50,000 after her baby died. In 2005, Ms Sterling Casil, from South Carolina, arrived home where her husband at the time and two children were. “My daughter Meredith, age 12 at the time, found Anthony ... Meredith had Anthony in her arms, and there was milk all over his face. I will never ever forget her face, or her voice when she said: ‘Mom...’”
Anthony, known to his family as ‘Lali‘, died in 2005
Despite performing CPR, and an ambulance arriving to take Anthony to the hospital, he did not survive. Ms Sterling Casil claims the ambulance took him to a hospital where the family was not insured, despite there being a hospital 15 minutes nearer where they were insured. “The total bill I got about a week after Anthony died was about $50,000. I was asked to pay $20,000 of that.”
After writing a letter to the president of the hospital explaining her situation, she paid $1,000 and was forgiven the remainder of the debt.
Ten years later, when she went with some friends to see Bernie Sanders speak, the senator talked about healthcare. “I hadn’t heard of Bernie Sanders before 2015 but my entire life experience says he and Our Revolution are the only hope we’ve got.”
There are still many hurdles – one of these candidates actually winning the presidential election being the greatest of all – but this is the closest the US has been to approving a universal healthcare system since the 1930s. The battle has raged for decades, and candidates such as Bernie Sanders are willing to lead their entire campaign on it.
“There have been many efforts over the last 100 years to establish a national system of insurance,” Dr Laugesen says. “The one thing that is palpable in public discussions today is a new degree of consternation or frustration with hospitals and other organisations’ pricing and billing – previously people blamed insurance companies, and now people are beginning to realise that there is something deeply off. It’s not only Democrats, it’s across the partisan spectrum.”
Many of these tragic stories have turned into action, with Americans volunteering, campaigning and sharing their stories online in a bid to encourage others to back Sanders. Mr Desnoyers and Ms Sterling Casil's tweets about their children have been shared thousands of times, with hundreds more posting their own experiences online.
As we saw in 2016, having the most passionate and engaged supporters does not always translate into a primary win. But with soaring healthcare costs, and polls suggesting more young people are likely to vote in presidential caucuses and primaries in 2020 than 2016, this year's election could be different.
Today, Mr Desnoyers struggles to make ends meet and regularly uses food banks. His financial difficulties prove a constant obstacle for his campaigning, making it difficult for him to afford to attend events, but he continues to fight. “This is just one more obstacle that I have to overcome to be an activist. It will not stop me!
“I can truly say if I did not decide to fight like this I do not know if I could survive.”
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