Brantford-area teen still fighting Queen's Park for surgery coverage
Nineteen-year-old Erika Crawford of St. George, Ontario has recently returned from her second surgery in the United States, where she sees a specialist for her Ehlers-Danlos Syndrome (EDS). The Province of Ontario does not cover her American surgeries. Photographed on Friday June 12, 2015 at her home in St. George, Ontario. (Brian Thompson/Brantford Expositor/Postmedia Network)
Brantford teen Erika Crawford is caught in a nightmarish medical Catch 22.
She suffers from a devastating condition known as Ehlers-Danlos Syndrome (EDS). When she was first diagnosed in 2012, she was told there’s no cure or treatment. At that time, if she twisted her neck too quickly, it could have caused her to have a stroke or damage her brain stem.
No doctors in this province have the expertise to treat her so she went to Dr. Fraser Henderson, a renowned neurologist in Maryland, who performed life-saving surgery on Erika two years ago.
But here’s the catch. The Ministry of Health and Long-Term Care in this province claims doctors here can perform the surgery — so OHIP refuses to pay. Erika’s family were able to raise the $60,000 for the U.S. surgery from their own pockets and from the generosity of their small town.
People opened their hearts and their wallets to help pay for Erika’s surgery.
Once she returned from the U.S., Erika — who turns 20 next month — was able to lead a relatively normal life until she was hit by more setbacks just a couple of months ago.
According to dad, Darren, her bladder and bowels weren’t functioning. She couldn’t eat and she lost 30 pounds.
The Crawfords rushed Erika back to Maryland for an another operation with Dr. Henderson May 19.
She’s back home and recovering nicely. She’s able to eat and is putting on weight, Darren says.
Not that you can put the price on your health, but the surgery came with a hefty $85,000 price tag. He’s maxed out his credit cards and his line of credit and has put a second mortgage on their home to pay the bills — because that’s what you do when you love a child and you want them to be healthy.
Erika’s doctor at Hamilton General Hospital told them they didn’t have the resources or the specialists to provide a solution for Erika’s condition. He sent them back to Dr. Henderson for a second opinion.
In an e-mail to me, Erika explained that EDS is incredibly painful, disabling and debilitating.
“The physical pain is unimaginably awful,” she said.
“I literally dislocate approximately over 40 times daily in my hips, shoulders, ankles, fingers, wrists, knees — just by simply moving. I have constant muscle, joint and bone pain,” she said.
Incredibly, this plucky youngster graduated last week from Mohawk College with a social worker diploma, although she wasn’t well enough to attend the graduation. Darren reports that she did a large part of her schooling either from home or from her hospital bed.
“We’re very proud of her,” Darren said. “She’s a strong, determined, persevering woman. She’s ready to take a stand.”
Add to the physical pain and the ever-present fear she could suffer a stroke the fact that OHIP has put the family through a financial wringer.
“Not only has this been tremendously tough on me, but it’s has been difficult for my parents trying to find help for me while dealing with the financial burden of my two out-of–province surgeries that OHIP has not covered,” Erika said. “If you can’t provide care here, at least have the humanity to refer us to someone who can care for us.”
The only thing that’s got her through has been the devotion of her parents, Darren and Michelle, and “the love of my life and best friend Matthew Houston,” she said.
“My parents have spent every single dime they have so they can keep their daughter alive,” she said. “Now they have to put a second mortgage on our house. Can you imagine the guilt I feel?”
The Ministry won’t even admit there’s no care in this province.
As spokesman for Health Minister Eric Hoskins insisted there are neurosurgeons in this province who can perform the surgery.
“In Ontario, there are highly qualified and experienced neurosurgeons who are able to perform these procedures when appropriate,” said Shae Greenfield.
“If the treatment is deemed necessary by a patient’s physician, the procedure would be covered by OHIP. Medically necessary physician and hospital services are insured in Ontario as required under the Canada Health Act,” he said.
Except that isn’t the reality for EDS patients. Darren has a letter from Erika’s doctor in Hamilton saying they don’t have the specialists to perform the operation and referring her to Dr. Henderson in Maryland.
Funding applications for out-of-country treatment are reviewed by ministry medical advisors and ministry staff on a case-by-case basis, Greenfield said.
When I pressed him on the names of these neurosurgeons, Greenfield did not supply any, reiterating the province, “has a number of highly trained neurosurgeons who are capable of performing “these types of procedures.”
That’s not the experience of the Crawfords and other EDS sufferers.
They’d like nothing better than to get treatment here. They can’t — and they’re left wondering why they pay taxes for a health system that’s failed them in their time of greatest need.
You can help Erika by donating in person to CIBC account: 02-952-8490783 or a gofundme account has been set-up http://www.gofundme.com/hopeforerika