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OHIP won't pay for rare eye cancer exam
Adds more stress to families of afflicted children
TANYA TALAGA
MEDICAL REPORTER
When Tania Charles first noticed the "strange reflection" in her baby son's left eye, she thought it was just a momentary flash of light dancing off his ink-jet dark pupil. But an ophthalmologist thought differently. He immediately recognized retinoblastoma, a rare form of eye cancer that afflicts about 24 Canadian newborns each year. Shocked and unable to comprehend what they were hearing, the Mississauga family were told to drive directly to the Hospital for Sick Children. On May 23, 2000, the family began their odyssey with cancer, a war they are still waging. Besides their personal struggle, the Charles family have found themselves in another fight they are part of an appeal by 26 Ontario families of OHIP's refusal to pay for a genetic test that would indicate presence of the disease. The matter is currently before the province's health services appeal and review board. The case of Marcus Charles is currently in a pre-hearing phase. Unwittingly, the Charles family stumbled into another storm one between a world renowned cancer doctor and the Hospital for Sick Children over who should do the testing. Dr. Brenda Gallie heads Sick Kids' clinical retinoblastoma program. Her groundbreaking research has led to the creation of what some experts call one of the best genetic tests for it. But since the government refuses to pay for her test her lab is not one designated by the ministry the doctor has paid for the test of every Ontario family out of her own pocket. Each test costs $3,000. Gallie estimates she's spent about $250,000 to pay for the testing. She says she borrows money from the bank in order to pay the technicians, buy the supplies and get the testing done. But the ministry of health does pay for a genetic retinoblastoma test performed at Sick Kids own lab. Even though Gallie sees patients at Sick Kids, she says she has nothing to do with the tests done at the hospital. If parents want her test and people fly from all over the world to get it it happens only at her research lab at the University Health Network. "Right now, Ontario says the test is done at the Hospital for Sick Children in the general labs and that's good enough," Gallie says. "But the patients and me say it's not good enough because we have no evidence of the quality of the tests." Dr. Peter Ray, head of molecular genetics at Sick Kids, says Gallie is fully aware of what type of test they are doing at Sick Kids and that it's essentially the same one as hers. He says his lab is licensed by the provincial government to perform retinoblastoma checks and as a result, receives numerous quality checks. "I'm not suggesting her lab isn't good," says Ray. "But we are a licensed lab by the ministry. We do tests for 30 different diseases. We get 10,000 samples a year. The test we are doing for retinoblastoma is the same basic principle as we do for many other diseases. Our expertise for this type of test is much higher than Brenda's if you go by the number of samples. That argument that she's making, it's fundamentally silly." This is the second time Gallie has found herself in a controversial situation at Sick Kids. In 1998, Gallie worked with and was a supporter of Dr. Nancy Olivieri, the researcher who was embroiled in a lengthy battle with the hospital and a drug company over the safety of a drug to treat a rare blood disorder. The dispute with the hospital was recently settled. When Gallie was offered a new job as head of cancer informatics at Princess Margaret Hospital in 1999, she leapt at the chance and she moved her research lab from Sick Kids to the University Health Network. But she still runs Sick Kids retinoblastoma program. A genetic test, taken from a blood sample, can catch the potentially fatal eye cancer before it grows. This test could save lives and sight. The retinoblastoma tumour starts in the eye and if not caught it can quickly invade the brain and spread. The Charles family had never heard of retinoblastoma before their son was diagnosed almost three years ago. Those tested for retinoblastoma usually have a family history of the disease or a sibling with it. The Charles family had neither. It wasn't until their second child was conceived did they turn to Gallie for a genetic test. If it could be detected that the baby had inherited the faulty gene causing retinoblastoma, treatment could begin early, greatly increasing the chances for saving the child's sight and preventing the need for chemotherapy. If the baby was found to have cancer, Tania's labour would be induced at 36 weeks so treatment could start. The tests showed Nathan, their younger son, doesn't have cancer. "We want to be able to catch the tumours at their very smallest," says Gallie from her office at Princess Margaret Hospital. "If the tumour is too big, we have a chance of the laser not working and we have to go to more horrible therapies like chemotherapy." Time was of the essence. Gallie first had to find the genetic marker in Marcus indicating retinoblastoma. Once found, she would test parents Donn and Tania for the faulty gene. All retinoblastoma children have mutations on exactly the same gene. Gallie found neither parent carried the faulty gene. Marcus' cancer was the result of tragic happenstance. During this time, Tania discovered the tests weren't covered by OHIP and that Gallie was footing the bill herself. She was astounded. "I wanted to do anything I could do so other people could have access to quick genetic testing," Tania says. The Charles family filed an appeal to the health review board. Gallie has formed a non-profit company called Retinoblastoma Solutions. It does testing for patients around the world and also shares knowledge with other laboratories working on fighting retinoblastoma. The company sees about 80 new samples a year, 75 per cent of which are from outside Canada. Tests on foreign samples are paid through insurance. Gallie says her lab has spent 15 years of federal research money developing her test. Dr. David Abramson, professor of ophthalmology at Weill-Cornell Medical College in New York, has known Gallie for almost 30 years. He says she has an "impeccable reputation" and "is a true leader in our field." He is familiar with the test she uses. "I do believe that it is one of the most reliable tests found to date," he says. "Without question, she is recognized as the leading Canadian in the field and one of the leading people in the field of retinoblastoma, worldwide." She has just published a study that shows molecular testing done at her lab at the University Health Network can identify with 89 per cent accuracy the type of gene mutation that caused the retinoblastoma in each family. Ontario parents have the right to get the genetic testing done where they see fit, Gallie says. That's why she's paid for the tests herself. Gallie vows she'll continue until Ontario pays for the tests. "We can't wait for a delay and for Ontario's lawyers to argue for another three years while babies are being born and suffering. I'm not going to do that." She says Sick Kids has "never talked to me how they do (their test). They don't use our methodology." And,they don't have the capacity to put the "energy into one rare disease." While Ray, at Sick Kids, says Gallie hasn't helped them create their genetic test, he says that both her test and his are "essentially" the same. "There are a few differences between what we do and what Brenda does, but not very much." He says he and Gallie have talked about the methodology. The gene lab he runs at Sick Kids is one of the ministry labs designated to do all the genetic testing for the province. "We do all the retinoblastoma testing that would come from anywhere in Ontario," he says. He admits his lab doesn't do as many retinoblastoma tests as Gallie's. "It's a rare disease."