30 Nov 2009 Canadian Cancer Patient Fights Bureaucracy in Desperate Fight for Life
To fight advanced colon cancer, Canadian Suzanne Aucoin needed Erbitux, a powerful anti-cancer drug, but the Canadian health bureaucracy said it wouldn’t pay. Aucoin traveled to New York to get the drug and to begin treatment on her own. “I am completely disgusted with our health-care system,” Aucoin said.
Suzanne Aucoin of St. Catharines, Ontario never imagined that dealing with the Canadian health care bureaucracy would be as tough as battling terminal cancer.
Aucoin had to go to the U.S. for treatment initially denied to her. While ill, she then engaged in a prolonged and complicated fight to get access to a life-extending anti-cancer drug and to recover the exorbitant amount she was forced to spend out of her own pocket on treatment.
In 1999, Aucoin was diagnosed with colorectal cancer. Surgeons removed large portions of her intestine and colon. But about four and a half years later, Aucoin became easily fatigued and felt pain in her side. A follow-up visit with her doctors revealed that the cancer had reappeared and spread to her lungs and liver.
In January 2004, Aucoin began chemotherapy treatment for stage IV colon cancer, the most advanced stage. A CT scan showed that chemotherapy had been ineffective at destroying the tumor in her liver. Aucoin’s oncologist recommended that weekly doses of the powerful anti-cancer drug, Erbitux, offered her the best hope for staying alive. The problem was the drug – which can shrink tumors in advanced cancer patients – was not publicly-provided or even available for purchase in Ontario.
Worse yet, Ministry of Health officials denied Aucoin’s application for out-of-country funding to permit Aucoin to get the potentially life-extending drug in the U.S. However, Aucoin claimed, the government was paying for three other patients with a similar form of cancer to receive treatment abroad. Reviews are on a case-by-case basis, but the health ministry did confirm it paid for some patients to receive Erbitux in the U.S.
“I just find it ridiculous that I have to go to these lengths when the government is glaringly wrong. They have all these inconsistencies, and I’m the one who suffers because of it,” Aucoin said.
Despite the government’s refusal to fund her treatment, Aucoin began receiving weekly treatments of Erbitux at a cost of $14,000 (USD) a month at a clinic in West Seneca, NY. The U.S. Food and Drug Administration approved Erbitux in February 2004. Thankfully, friends and supporters raised more than $180,000 (CAD) over several years to help pay for her treatment.
“You can’t wait with this cancer,” she said. “You can’t wait for people to make decisions about your health. You can’t wait for forms to be filled out. You have to go where the drug is.”
In fall 2005, Health Canada – the Canadian agency responsible for evaluating drugs – approved Erbitux. But health officials refused to cover Erbitux and limited the number of patients who could have access.
Fortunately, a loophole existed. In December 2005, Aucoin was the first patient allowed Erbitux under a Special Access Program set up for seriously ill patients. She would have to pay over $6,000 (CAD) a month for treatment, which she received at a Hamilton, Ontario clinic, while the government paid the administrative costs.
“I just want to take care of myself,” Aucoin said. “My job is to get well and I feel like my government’s letting me down because they’re not doing their job.”
Following another appeal for out-of-country funding several months later, the government changed its mind and, without explanation, agreed to cover Aucoin’s treatment. The decision meant Aucoin would no longer pay out-of-pocket, but she would again need to travel across the border. Oddly, the government directed her to a Buffalo, NY cancer hospital that charged thousands of dollars more for Erbitux than the West Seneca clinic Aucoin used for out-of-pocket treatment. She began treatment at the Roswell Park Cancer Institute in April 2006.
Then the Ontario government stonewalled Aucoin’s attempt to be reimbursed. In June 2006, health officials denied her application for reimbursement saying the government would “only approve [reimbursement] if it’s in a certain setting, i.e., a hospital,” not a private clinic. Moreover, Aucoin was not granted funding approval before she went abroad for treatment.
“I am completely disgusted with our health care system,” Aucoin said. “I am very discouraged and frustrated by the lack of professionalism, the lack of consistency and the lack of care for me as an individual patient.” She added, “I’m not asking for Botox, I’m asking for life-saving treatment.”
After losing on appeal and running out of options, Aucoin appealed to Ontario’s ombudsman, Andre Martin. Following his investigation, in January 2007 Ontario’s health officials finally agreed to pay over $76,000 (CAD) for Aucoin’s out-of-country care and for legal expenses. The ombudsman blasted health officials for their “cruel” treatment and “slavish adherence to rules at the expense of common sense.”
“I should never have had to deal with this, it takes all my energy to fight cancer,” Aucoin said. “It rights a wrong on some levels but you cannot put a price tag on my mental strain and stress.”
Tragically, Aucoin lost her fight against cancer. She passed away in November 2007.
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