For more than two decades 64-year-old Anne Smith, a mother of four, says she’s been suffering.
“I can’t have a proper life like everybody else. I can’t even go to the bathroom on my own,” Smith said
She recounts years of visiting various hospitals and specialists all who have tried but have not yet successfully treated her symptoms.
“It’s just this constant swelling in my brain, every night a bam bam bam sound, vibrating, it’s excruciating,” Smith said.
Those symptoms began in the 1980s after she began taking diet pills, which were heavily marketed and available over the counter at the time.
“The FDA banned this drug after I began taking it.”
Smith believes the drug contained amphetamines, which studies have since shown can cause neurological problems with continued use. After years of trying several medications prescribed by doctors here in Canada, nothing has helped.
“In fact, any drug I take only makes the symptoms worse,” she said. “Doctors have tried for years to figure this out. They know something is terribly wrong but have not been able to solve this.”
Smith has spent the past several years doing her own research on the use of amphetamines and its connection to her issues, leading her to multiple studies done in the United States.
“There have been doctors there who have seen and successfully treated patients just like me,” she said. “If I had the money, I would have been there years ago, but I don’t.”
She’s now applying for the second time in 10 years to get coverage from OHIP for out-of-country treatment. Her first request was denied back in 2012.
“It’s more urgent now as I have been diagnosed with type 2 diabetes, which needs to be treated, but every time I take insulin my brain problems only get worse, so I have been advised to stop all medications,” she said. “They have to treat my brain issue first but nobody here can do that.”
Receiving approval through OHIP is not an easy process.
“There’s very limited coverage under OHIP for Ontarians who travel, say, to the United States,” said Natalie Mehra with the Ontario Health Coalition.
But it does happen, provided doctors representing the patient meet a number of requirements. They must submit written confirmation from a specialist that regulatory criteria for funding are met and include appropriate medical records.
“It has to be something that isn’t experimental, that is an accepted treatment in Ontario,” Mehra said. “It has to be at a licensed hospital facility, so a proper hospital or facility, and it has to result in significant irreversible tissue damage or death if you don’t do it.”
Once all the boxes are checked and backed with appropriate records and doctor testimonies, OHIP will then review the application and provide a decision.
Smith, who has letters from physicians, believes she has the proof and is cautiously optimistic as she awaits a decision.
“What I know for certain is despite years of trying, I can’t get the help here,” she said. “Hospitals in the U.S. have seen people just like me. I just need to get there. I’m laying here slowly dying.”
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