The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskPaul@Sunnybrook.ca
Question: My friend’s father was recently diagnosed with relatively advanced colon cancer. As part of his treatment he was given a temporary colostomy, so his bowel is being bypassed, and he has a colostomy bag that collects his feces. These bags are expensive and need to be changed about 3 times a day. At $10 a bag it add up to an annual cost of about $11,000. They have asked about getting the bags reimbursed through the Assistive Devices Program of the Ontario Ministry of Health, but criteria for reimbursement are that the colostomy is permanent, not temporary. Why is this the case? They expect her Dad to have the colostomy for about one year – is there a way that they can get the costs of the bags covered, or at least partially reimbursed?
Answer: Unfortunately governments don’t always cover the cost of medical supplies. But let’s set aside the issue of reimbursement for a moment and focus on the huge size of this patient’s bill.
I talked to several experts about this situation. While there is some variation in the amount patients will spend on their supplies, everyone felt $11,000 was extremely high.
Debbie Miller, an Advanced Practice Nurse and a Certified Enterostomal Therapy Nurse at Sunnybrook Health Sciences Centre, summed up their collective response with these words: “This is not normal.”
Of course, not everyone can use the same products because medical circumstances differ from one person to the next. The specific aspects of the surgery will often determine what products – which sometimes include multiple parts – the patient needs and how often they must be changed.
On average, patients change these devices twice a week, says Ms. Miller. Some, however, require pouches that are changed once or twice daily.
“I tell patients they are probably looking at spending a minimum amount of $1,200 a year. But some can be spending upwards of $3,000 a year,” she adds.
It’s possible your friend’s father isn’t using his products properly. Or, he may not be aware of cheaper options that could still meet his needs.
Ms. Miller suggests he seek out the help of an Enterostomal Therapy (E.T.) Nurse. These specialized nurses provide guidance and support to patients who’ve had colostomies or other ostomy procedures.
(Ostomy is the medical term for the surgical construction of an opening for the discharge of bodily wastes and includes the colostomy, ileostomy and urotomy. The procedures differ in the amount of the intestine or bladder that is removed.)
He should ask if an E.T. nurse is available at the centre where has been receiving cancer treatment.
If that fails, go to the website of The Canadian Association of Enterostomal Therapywhich has a service to help people find an E.T. nurse.
Hopefully, an E.T. nurse will be able to suggest changes that bring his sky-high bill down to earth.
But your friend’s father will still be out of luck when it comes to Ontario’s Assistive Devices Program, which doesn’t pay the cost of supplies for temporary ostomies. Even for those with permanent ostomies, the Ontario program – which provides up to $600 a year –usually isn’t enough to cover all their expenses. Patients who are on social assistance are entitled to slightly more – $800 a year.
There’s a wide variation in the level of reimbursement across Canada. Some provinces cover the full cost of ostomy supplies for certain individuals, while others pick up some or none of the tab.
That means a lot of people are paying something out-of-pocket. So it’s worthwhile checking into other sources of financial aid.
Depending on where you live, you might be able to tap into Wellspring, a network of community-based centres that offer a variety of programs, free of charge and without medical referral, to assist people coping with the everyday realities of cancer.
One of its programs may be particularly relevant in this situation. It’s called Money Matters and it helps patients to access all options for income assistance and drug coverage related to their illness.
“We help people navigate through the maze of income replacement programs for those who are unable to work because of their cancer,” explains Pamela Bowes, the manager of the Money Matters program.
She says patients may be able to recoup part of their costs if they have private insurance coverage through their employer. Or, they could be eligible for a federal credit on their income taxes. “If you are spending more than 3 per cent of your income on medical expenses, then you can claim these expenses for a tax credit,” Ms. Bowes says. To learn more about the Medical Expenses Tax Credit, and theDisability Tax Credit, check out the Canada Revenue Agency website.
Essentially, Wellspring tries to make sure cancer patients don’t miss out on income they are entitled to receive.
Wellspring has centres in several Southern Ontario communities as well as Calgary. (The Money Matters program is presently offered at centres in the Greater Toronto Area and Calgary.)
There are also some private charities that will help patients with their medical bills. For instance, the Wendy Bear Assistance Program, named in memory of the wife of hockey legend Darryl Sittler, provides money to colorectal cancer patients who are experiencing financial hardship because of the disease.
Through a combination of public programs and private charities, it may be possible to recover some medical expenses. Still, it would be nice to have a standardized system of support across Canada, so some patients didn’t suffer a greater financial burden than others.
Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families, relying heavily on medical and health experts. His blog Personal Health Navigator is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Email your questions to AskPaul@sunnybrook.ca and follow Paul on Twitter @epaultaylor
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