I live in Ontario and can’t afford my cancer drug. What can I do?
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Question: I am 61 years old, live in Ontario and I have advanced breast cancer. My doctor has prescribed a drug called Afinitor, which costs $7,000 a month. I have private insurance, which picks up 80 per cent of the cost. The pharmacist at the hospital where I am being treated was able to get the drug company to absorb the other 20 per cent. I am not paying anything now. But there is a lifetime cap of $100,000 on my insurance. I am worried about what I am going to do when my coverage runs out. This drug is as expensive as gold – it is not something I can pay for. Do I have any options?
Answer: That is, indeed, an astoundingly expensive drug. It’s bad enough that you have to deal with cancer, but these financial concerns must be adding to your stress.
You can rest assured there are various programs to help Ontario residents who can’t afford the price of their medications. And each regional cancer-treatment centre has specially-trained staff to guide patients and their families through the various application processes.
However, I would be misleading you to suggest that Ontario has an uncomplicated system for covering the cost of cancer drugs. Some of the other provinces have adopted a more streamlined and comprehensive approach.
Before delving into the specifics of Ontario’s reimbursement programs, it’s worthwhile providing some background to put your situation into the bigger picture.
More and more Ontario cancer patients are facing similar financial questions largely because of the changing nature of cancer treatments.
In the past, most patients who needed chemotherapy received their cancer drugs through an IV (intravenous) needle at a hospital clinic. Patients didn’t have to think about the cost because medications given inside a hospital are usually picked up by Ontario’s public health-care system.
In recent years, though, an increasing number of the newer drugs can be given orally, in pill form. Patients can take the pills in the comfort of their own homes. This delivery method is more convenient – especially for those who live a long distance from hospital IV clinics.
But there is a catch to the convenience. The province does not automatically cover the cost of drugs delivered outside of a hospital. So patients must rely on a patchwork of programs and insurance plans to pay for their medications.
Some patients – like you – have private insurance, which is often provided through their employers. As you have already discovered, these insurance plans usually have strings attached – there may be a deductible, a co-payment, or a cap on the total amount that will be paid out. Patients may have to reach into their own pockets to pay a portion of these expenses.
Furthermore, some insurance companies have been directing patients to collect their drugs from certain “preferred” pharmacies in the community, or a drug wholesaler, rather than from the pharmacy at the hospital where they have been receiving their cancer treatments.
Insurance firms don’t tend to talk about their private business dealings with drug stores. But at least one company – Sun Life Financial –acknowledges these arrangements are done to reduce costs. Pharmacies in the network are providing the drugs at reduced mark-up prices.
Sun Life says patients don’t have to use the preferred pharmacies, but they can reduce their insurance claims by doing so. That means the patient’s co-payment would be trimmed back. And if there is a cap on the lifetime payout, lowering claims could help benefits last longer.
From a business point of view, insurance firms may feel justified in sending patients to certain pharmacies. (Sun Life paid out almost $40-million in insurance claims for cancer drugs in 2012.)
But cancer doctors are worried that their patients may not be getting adequate instructions from the community pharmacists.
After all, cancer drugs can be extremely toxic and produce serious side effects, says Dr. Maureen Trudeau, head of medical oncology and hematology at Sunnybrook Health Sciences Centre.
She points out that cancer-centre pharmacists have special training to assist patients who are taking these powerful drugs. There are also procedures in place to double-check that the prescriptions are dispensed correctly in hospital pharmacies. These additional safeguards do not necessarily exist at regular drug stores in the community.
“We’re the ones who have to deal with the side effects when patients come back with problems,” says Dr. Trudeau. “So I want our patients counselled by our pharmacists.”
The challenges posed by expensive drugs are not new to Ontario. Oral cancer medications first came on the market more than two decades ago. But concerns are reaching a heightened pitch because of the escalating number of oral medications – they now make up half of all the new cancer drugs – and many of these drugs are very, very costly. According to US figures, 11 of 12 cancer medications approved in 2012 were priced above $100,000 a year.
Some of these new drugs don’t actually cure the disease or significantly prolong life, says Dr. Trudeau. Instead, they may ease symptoms and make what time remains more bearable. For cancer patients and their families, the improvements in the quality of life may seem priceless. But for policy makers, dealing with competing demands for limited health-care dollars, the benefits may not be so clear-cut and they may conclude that a pricey drug does not provide value for money.
Recent advances in genetic research have added another wrinkle to drug coverage, says Dr. Malcolm Moore, head of medical oncology and hematology at Princess Margaret Hospital in Toronto. Some of the newer drugs, he explains, target specific genetic features found in tumours. Yet the approval process for new drugs is usually based on studies carried out on a particular type of cancer. That means a drug that wins approval with breast cancer studies can’t be immediately used to treat another type of cancer, even though a patient’s tumour has the same genetic traits. Additional studies would be required to prove it works in another type of cancer to justify expanded insurance coverage.
“We felt it was important to have a forum in which we could hear from stakeholders, including clinicians, patients, pharmacists and oncologists,” says Scott Gavura, Director of Provincial Drug Reimbursement at CCO.
Health-care representatives from several other provinces were also invited to attend. “In Canada, we have multiple health systems, each doing different things for their populations,” says Mr. Gavura. “We thought there was a lot we could learn from the other provinces.”
In fact, it became quickly apparent to those attending the think tank that some provinces have far more comprehensive coverage for cancer medications than Ontario.
The British Columbia Cancer Agency for instance, provides full drug coverage for both take-home cancer medications and those administered in a hospital. Take-home medications are dispensed through designated cancer-related pharmacies. Patients also attend group chemotherapy lessons or receive one-on-one counseling from a pharmacist.
Similar programs exist in Alberta and Saskatchewan. Manitoba provides drug coverage, but its distribution isn’t as centralized as the other western provinces. The bottom line is that cancer patients living in Western Canada don’t need to worry about how they will pay for their medications.
Now, let’s turn back to Ontario and take a look at the supports to help patients with their drug costs. The main programs include:
Ontario Drug Benefit Program (ODB): Drug coverage is provided for those who are 65 years of age or older; residents of long-term care homes; and people who are on social assistance. The coverage applies to a list – or formulary – of about 3,800 medications, which don’t include many of the newer cancer drugs. Seniors, whose income is over a certain amount, must pay the first $100 in prescription drugs costs each year. This is known as the deductible. A dispensing fee is charged for each prescription.
Trillium Drug Program: Assistance is given to individuals facing high drug costs in relation to their overall income. The program kicks in when drug costs exceed 4 per cent of the net annual income of the patient’s household (based on the previous tax year). Once drug expenditures reach that 4 per cent level, the patient would qualify to receive drug coverage through the ODB. Patients need to apply for Trillium – it doesn’t happen automatically.
Exceptional Access Program (EAP): This program is the gateway to many of the newer and costlier cancer medications. The province has a list – or formulary – of approved drugs that can be routinely prescribed to patients who qualify for ODB. The most expensive drugs, however, require an added level of approval through the EAP. Access is granted on a case-by-case basis and the final decision rests with an expert advisory committee. The patient’s doctor must provide a detailed rationale for requesting a particular drug and show that no alternative medication is available.
Drug company assistance: Most pharmaceutical companies offer some form of help – such as a price cut – to patients who can’t afford certain medications. These price reductions are usually arranged through the pharmacist who contacts the drug company on behalf of the patient. A typical price cut would be in the range of 20 per cent, says Flay Charbonneau, the manager of the pharmacy at Sunnybrook’s Odette Cancer Centre.
All these programs are run separately and require their own approvals. Obtaining drug coverage for take-home cancer medications can be a multi-step process. A patient who is hoping to gain access to a drug through EAP and financial help from Trillium would have to mail in two separate applications and then wait a period of days to weeks for the approvals. Drug treatment can’t begin until these steps have been successfully completed.
I don’t want to alarm you by the complexity of the Ontario system. As I mentioned from the start, special staff will assist you at the cancer centre where you are being treated.
“We would not want patients to navigate this themselves. We spend a lot of time with patients helping them get enrolled into the programs,” says Manisha Gandhi, manager of the patient and family support program at Sunnybrook.
Your physician will also be involved in writing letters on your behalf if you are seeking EAP access to certain drugs.
Despite these added levels of support, Ontario’s reimbursement system seems rather cumbersome compared to provinces like BC where a single agency takes care of everything – and there are no out-of-pocket expenses for the patients.
“There is no question that it is much more complicated from a patient’s perspective,” acknowledges Mr. Gavura.
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Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog, Personal Health Navigator, is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Follow Paul on Twitter @epaultaylor.