For Canadian Erika Crawford, the pain of Ehlers-Danlos was exacerbated by both Chiari Malformation—and a seemingly uncaring Ontario health care bureaucracy, reports the Toronto Sun:
TORONTO - Erika Crawford is a beautiful young woman with big dreams — and a terrible disease. The Brantford teen’s dreams include being able to play soccer.
The nightmare of her illness is that any small physical contact could cause her a catastrophic injury. Erika, 17, has Ehlers–Danlos Syndrome (EDS), an inherited connective tissue disorder that among other things is causing her spine to press on her brain stem and the main artery in her neck.
Brantford Expositor reporter Susan Gamble first broke this story. “I was told there was absolutely no cure or treatment available,” Erika told Gamble.
If she twists her neck too quickly it can cause her to have a stroke or cause damage to her brain stem that could paralyze her. Erika saw scores of doctors before she finally got the devastating diagnosis in April.
EDS can differ in severity from patient to patient. For Erika it could be deadly unless she gets life-saving surgery in the U.S. with a doctor who specializes in EDS. No doctors in this province are experts in the disease. The operation will cost about $60,000. On Thursday the family got the devastating news from heartless OHIP bureaucrats that they’ve turned down her appeal. They won’t pay for her surgery. Erika can’t wait. She’s living in the shadow of imminent death. The surgery is booked for Oct. 9 and the U.S. hospital needs $30,000 on deposit before they can go ahead. It’s disgusting that a government that spent $230 million to cancel two power plants to save the jobs of a couple of Liberal MPPs, that squandered hundreds of millions more on Ornge, won’t spend a nickel to save a child.
Schools and churches are rallying with fundraisers.
While health ministry officials insist the surgery can be done here, those familiar with the complex nature of EDS say that’s just not true. The problem is identifying an Ontario interdisciplinary medical team and neurosurgeon that’s trained to perform the urgent, life-threatening and complex surgery that’s required on a 17-year-old girl, says a spokesman for the charity Improving the Life of Children.
“The family would gladly stay here. This family is facing spending hundreds of thousands of dollars,” said ILC’s Sandy Smeenk. The U.S. doctor has offered to come here to perform the surgery and train doctors in this province. Health Minister Deb Matthews insists the surgery can be performed here and says about 97% of applications for out of country care get approved. She said 35 such surgeries have been performed here. “Given that the application was not accepted, I can tell you that there would be a reason for that and I can tell you that if a child or anyone needs a procedure, no matter how complicated that procedure is, and there’s someone here, or a team here who can do that then, of course, we don’t pay for someone to go out of province when that procedure can be performed in Ontario,” Matthews said.
That’s no comfort to Erika and her family. On top of the stress of dealing with a desperately ill child, her mom, Michelle, is frustrated that they must also fight an uncaring health bureaucracy. She says doctors here aren’t EDS specialists, while 90% of the U.S. doctor’s patients suffer from the condition. “EDS children are totally different,” said Michelle. Erika has complex underlying complications, such as an underlying blood disorder and connective tissue problems.
Shame on this government for letting a child like Erika down. They should hang their heads in shame. If you want help, you can donate to Erika at any CIBC branch using the Transit No. 029528490783.Luckily for Erika—with classmates and individuals contributing to the cost—the surgery was not only successful, but the experience brought the community together.
Unfortunately, while millions of Americans find themselves in similar circumstances when dealing with countless private insurances companies, Medicare, Medicaid, the Veterans Administration, and many other public insurance plans, stories such as Erika's become the default response to pleas for a single-payer national health care system.
Clearly, Canada—and the UK—need to modernize their national healthcare systems to account for the complexity and expense of 21st century medicine. Concurrently, those of us who advocate for a single-payer system in the US need to be aware of the challenges facing patients under systems in the UK and Canada and to advocate for reforms that would make single payer national health care in the US a model for the world.