Out-of-country cancer care: The Out-of-Country Conundrum

Out-of-country cancer care: The Out-of-Country Conundrum

July 20, 2006

20 July, 2006

The Ministry of Health overhauled its out-of-country care program and paid $75,000 to a chemotherapy patient who was wrongly denied coverage.

The Ministry of Health overhauled its out-of-country care program and paid $75,000 to a chemotherapy patient who was wrongly denied coverage. No report was issued.

 

Case update - 2007-2008

When Suzanne Aucoin came to the Ombudsman’s Office in 2007, she was fighting two battles: She was refusing to give in to stage four colon cancer and she was demanding that the Ontario Health Insurance Program (OHIP) pay for the treatment she had undergone in Buffalo, New York, through the Ministry of Health and Long-Term Care’s out-of-country funding program.

SORT’s investigation of Ms. Aucoin’s situation and the workings of the out-of-country program found that OHIP’s forms and procedures were all but impossible for even physicians to understand, there was little explanation given for its decisions and it was failing to communicate basic information to patients and their doctors. The Ombudsman likened it to handing patients a “Rubik’s Cube” and leaving them to figure it out for themselves.

In Ms. Aucoin’s case, the Ombudsman recommended that she be reimbursed $76,000 for her medical and legal fees. He also recommended an overhaul of the entire program. The Ministry agreed and, with the matter thus resolved, no formal report was issued.

The Ministry hired two external consultants and their review of the program was completed in the summer of 2007. A copy of their report was provided to the Ombudsman. Among the changes now in place are a redesigned website that makes more information about the out-of-country program available to patients and their physicians, and in more accessible language. The Ministry has revised the letter it sends to doctors who apply to the program on their patients’ behalf, giving clearer reasons and fuller explanations to those whose applications are denied. Updated information about the program was also sent to physicians, hospitals, clinics and laboratories in an OHIP bulletin.

Sadly, Ms. Aucoin lost her battle with cancer in November 2007. “Her challenges to the system led to changes that ended up being far wider and deeper than I think she ever imagined,” the Ombudsman said in a tribute in her hometown newspaper, the St. Catharines Standard. “She had a real sense that she had turned the system on its head and had accomplished something … I think she’s saved a lot of people from going down that same agonizing bureaucratic maze.”

 

Case update - 2006-2007

On Nov. 23, 2006, the Ombudsman notified the Ministry of Health and Long-Term Care of his intention to investigate the case of Suzanne Aucoin, who had been denied funding for cancer treatment under OHIP’s out-of-country program.

Ms. Aucoin was first diagnosed with Stage 1 colorectal cancer in June 1999, at the age of 28. She underwent surgery and was assured she had been cured, but in October 2003 she learned it had returned and worsened to Stage 4, considered ncurable. She was told she could expect to live 22 months with chemotherapy, but only a year without it. In November 2004, she began treatment with the anti-cancer agent Avastin, which she obtained and paid for through a cancer specialist in Buffalo, New York. The drug manufacturer refunded two-thirds of this cost to her on compassionate grounds, but she was still out of pocket approximately $20,000 U.S.

In September 2005, another anti-cancer agent, Erbitux, was approved by Health Canada. Ms. Aucoin learned that a number of colorectal cancer patients in Ontario had obtained funding to receive Erbitux treatment in the U.S. Her oncologist submitted an application requesting OHIP funding for out-of-country treatment involving a “cocktail” of drugs including Erbitux. The Ministry rejected the application, saying the proposed treatment was not generally accepted in Ontario and was considered experimental. As well, it indicated the medication was legally available in Ontario. Ms. Aucoin and her physician did not understand how Erbitux could be considered “experimental” given its widespread use in the U.S. – and the fact that the Ministry was already funding it for others. As for Erbitux being available in Ontario, while it had been approved by Health Canada, the drug’s manufacturer had chosen not to sell it in Canada.

Ms. Aucoin appealed the decision to the Health Services Appeal and Review Board, but she did not put off her chemotherapy. As she put it, “Cancer doesn’t wait.” She returned to her cancer specialist’s private clinic in Buffalo, paying for the treatment with money she and several supporters had raised themselves. The cost of her treatment was approximately $10,000 less per month than the Roswell Park Cancer Institute, also in Buffalo, where the Ministry was paying for other Ontario cancer patients to receive Erbitux. In March 2006, her physician reapplied for out-of-country funding, this time for Erbitux alone, and this time the province agreed to fund eight weeks of treatment at Roswell Park.

In November 2006, the Health Services Appeal and Review Board denied Ms. Aucoin’s appeal. However, it was no longer claiming the Erbitux treatment she received in the U.S. was experimental. Instead, it now said it was rejecting her because she had not sought treatment in a licensed health facility, i.e., a hospital.

SORT investigators took approximately two months to interview Ms. Aucoin and her counsel, her oncologist, and officials from the Ministry, and to review the relevant legislation and Ministry documents. The Ombudsman concluded that had the Ministry properly advised Ms. Aucoin and her physician of its reasons for denying her application, she would not have incurred substantial medical expenses necessary to prolong her life, or legal expenses in challenging the decision. As well, he found that the Ministry had failed to communicate basic information to physicians and the public about coverage for out-of-country treatment.

The Ombudsman recommended that Ms. Aucoin be reimbursed for all the expenses she incurred due to the rejection of her funding application. In addition, he recommended the Ministry review its out-ofcountry program and implement improvements to ensure that decisions are founded on consistent and well-defined
standards, and that patients and physicians are given clear and accurate reasons for the responses they are given.

The Ministry accepted all of the Ombudsman’s recommendations and agreed to report regularly on its progress in implementing them. As well, it immediately reimbursed Ms. Aucoin $76,000 for her medical costs and legal fees. On Jan. 30, 2007, the Ministry issued a press release, stating: “Following the Ombudsman’s investigation, the Ministry has agreed to reimburse Ms. Aucoin for her costs. In communicating the decision to Ms. Aucoin, the Deputy Minister on behalf of the Ministry of Health and Long-Term Care apologized for the difficulties Ms. Aucoin experienced in resolving this issue.” The Deputy Minister personally delivered the reimbursement cheque to Ms. Aucoin. With the matter thus resolved, the Ombudsman decided not to publish a formal report.

The Ministry also announced a comprehensive review of its out-of-country funding program, to be completed in the spring of 2007. At the time this report was written, the review was ongoing and the Ombudsman and his senior staff had been interviewed by two external consultants retained by the Ministry to conduct the review.