| A Calgary family is fighting to get the Alberta government to pay for U.S. operations for their teenage children, which they say were necessary to relieve the symptoms of a debilitating medical condition that had left them painfully nauseous every day.
They’re hoping their fight to get coverage will help other Albertans with the medical condition, who currently can’t afford to go to the U.S. and pay for the operation themselves.
Jennifer and Thomas Ferris, who are 15 and 13 years old respectively, suffer from gastroparesis, a condition where food moves more slowly than usual through people’s stomachs, causing abdominal pain, nausea and vomiting. In severe cases, people can become malnourished and dehydrated because they can’t keep anything in their stomachs. Eventually, some people with the condition have to be tube fed in order to get enough nourishment.
Jeanne Keith-Ferris, the mother of the two Calgary teenagers, says her kids have been sick for the last seven years. She says her son and daughter were on medication that prevented them from vomiting so they were able to maintain their body weight. But Keith-Ferris says Jennifer and Thomas experienced constant painful nausea that kept them from attending school regularly or functioning as normal teenagers.
Keith-Ferris learned about a device, called Enterra Therapy, which has been proven to reduce vomiting and nausea in patients diagnosed with gastroparesis. The device emits mild electrical pulses to stimulate the stomach. Keith-Ferris applied to the province’s Out of Country Health Services Committee for coverage of the operation in the U.S., because there are no surgeons that perform the operation in Canada, but the application was denied, despite the fact that the device has been approved for use by Health Canada. Keith-Ferris appealed the decision, but her appeal was also rejected.
The family decided to go ahead with the operation despite this and, on December 15, her two children had the device installed. Keith-Ferris hasn’t received all the bills from the surgery yet, but she estimates it will probably cost the family $100,000 U.S. for the operations and hospitalization as well as travel and hotel costs.
Alberta Health and Wellness spokesperson David Dear says he can’t speak specifically about the Ferris case because of privacy legislation. Initially, Dear told Fast Forward the surgery to have the Enterra Therapy device installed "has not been approved for children by Health Canada," and that’s why the government wouldn’t cover the cost of the operation. However, Dear said in a later interview that that information was "erroneous" and that Health Canada does not regulate the types of surgeries that are performed in various provinces.
He says applications are only approved if the surgery can’t be offered in Canada and it isn’t considered experimental, but he couldn’t comment on whether those requirements were met in the Ferris case. Dear says if an applicant gets "compelling new evidence" they can make another application for the operation to be covered.
Keith-Ferris says she can’t believe that the provincial government is refusing to fund the operations. She says, already, just two weeks after the operation, her kids are almost nausea free.
"Not only does it return quality of life, it’s life-saving for some people," she says. "They’re wrong and they are being harmful to (people with gastroparesis) and it’s intolerable…. It’s frustrating as hell."
Thomas Abell, a gastroenterologist in Jackson, Mississippi and an expert on gastroparesis who is treating Keith-Ferris’s kids, says, 1000 Enterra Therapy devices have been installed in patients over the past 10 years and he’s personally had 200 patients who had the device installed, but he says many doctors don’t know anything about gastroparesis or the device.
"About 80 to 90 per cent of people have a significant reduction in nausea and vomiting," he says. "It greatly improves their quality of life. They can go to school and work and don’t need tube feeding to survive."
He says "the device pays for itself over time" because patients aren’t nearly as likely to be hospitalized due to gastroparesis.
"It’s not a cure, but we think it’s a pretty good treatment," he says.
Jacqueline McPhee, another gastroparesis sufferer, has been watching Keith-Ferris’s case closely. McPhee has been in Rockyview Hospital for weeks because she keeps throwing up any food or liquid she eats and she is losing too much weight. Her doctor has told her that tube feeding may be the only option. But she says she’s hoping that the government will pay for her to go and get the same operation that the Keith-Ferris children had.
"I can’t afford to go down there. I’ve been off work since March because I haven’t been able to do my job," she says.
McPhee is starting to feel alarmed about the amount of weight she’s losing. She says for months she’s had no energy to do anything.
"I can’t eat. I can’t live on tube feeding for the rest of my life. I’m 44. This is not the way I want to spend my life," she says. |
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