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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.
To get a better grasp on all these issues, Cancer Care Ontario (CCO), an agency of the provincial government, held a one-day “think tank” in May of 2014.
“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.
The comments section is closed.
I am receiving Chemo treatment for Ovarian cancer and am being with the drug gemcitabine combined with CARBOplatin. Could not receive Avastin because I was told that the cost was not covered in Ontario. I would like to know if this is true in this year 2020.
I thank you for your article. It was very helpful.
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Tatjana
I would like to know why we don’t have same covering like British Columbia? Is not enough we deal with cancer. We are Canadians like them we pay taxes like in BC . That is mean if we don’t have money to buy medicine we can die. How fair is that Government need to do something for us!!!
They shouldn’t let us to worry about medication what we have to take we ,worry enough for our life how to treat cancer , is cancer will be back and I can keep typing.
What we have to do we should ask what free health care we have just basic and paying so much taxis. We need to ask Government to cover our medications to save our life’s like British Columbia have !!!!!
This is a very insightful article. I also have metastatic breast cancer and need to take very expensive drugs to keep me alive. I’m very concerned about how I’m going to be able to afford it. I didn’t realize insurance companies have a lifetime cap of $100,000. Now there’s something else to worry about. I’m wondering about moving to Vancouver. And why aren’t all provinces handling cancer drugs the same way? It’s really sad that so many people are profitting from our suffering.
All cancer/serious sickness should be treated free of cost,when Canadian government can go beyond there country to help other countries why not help their own citizens. Like there is a saying that “every good starts from home.I pray to Allah the Magnificent to cure each and everyone and show everyone the straight path.
Thank You for all this information. It is a great help and gives me a little peace of mind that I won’t die feeling a lot of unnecessary pain.
Just wanted to say thank you for writing this breakdown and very useful information of how the medical system works in Ontario.
Thank you for this comprehensive explanation. It has been very helpful.
Good day, I am facing the same problem. I have been prescribed Afinitor 10 mg because of my stage 4 metastatic breast cancer and I am looking for a company that will help me to pay the 30% that my insurance will not cover and by the price I see of this medication I can’t afford it.. I live in Quebec and I don’t know where to look for this type of help. I know there is companies that help like Victory program they helped me with neupogene injections.. but for this medication Afinitor ( Everolimus) I really don’t know. thank you for your help.
No drug company in the world should be getting this much money for someone life. And with everything else on the market, drug wise, are these big drug companies not taking enough money out of people’s pockets. Bet the company CEOs have no worries? It’s so upsetting to hear these stories of cancer. And to know that they just don’t care about others that are suffering. May God bless them all in there time of need.
My husband was just told on Boxing day he has stage 4 Lung cancer and he never smoked or drink in his life and just found out my life insurance does not cover it is there a Insurance that cover cancer
We paid 20,000.00 for a cancer treatment for my husband’s cancer nobody would help us it all had to paid upfront before treatment was allowed. We worked our whole lives to have it taken away in a heartbeat very sad. People should be told cancer treatments are NOT free because we are lead to Believe they are
was diagnosed with stage 3c melanoma took lifnotes out of arm pit and was going into trile now they say 5 specs on lungs so now kicked out of trile now basck to scare one will my treatment be covered or do i just give up and think there is bno hope
Yes, Ontario has a second-rate cancer drug policy. However, just imagine how much could have been done, if we had the $billions that the Mcguinty-Wynne regime has pissed away on frivolous and poorly conceived/executed programs.
Any reason why it’s not mentioned that Sun Life requires a special authorization form completed by your oncologist every six months. They don’t notify you of this and they make no exceptions or offer any assistance. They are not easy to deal with.
I’m with Manulife. No such requirement. Just a make-work program for some puttz at Sunlife.
Very hard to hear that the Ontario Goverment are treating people this way, I had no idea! Shame on them!
Do cancer patient need to move to British Columbia so they can be treated? It is my only way to be treated? I am not on Ontario work or disability. I am an entrepreneur with no dental or health coverage. Also, no insurance due to the fact that in 1989 (25 years old) was first diagnose with breast carcinoma). Now February 2017, second time with breast cancer and need to start chemo as soon as possible to shrink the tumor to be able to operated. Chemo for 4 months than mastectomy after follow with radiation treatment. Before any chemo, I need to pay for prescribe medication at about $30 000.00
Should I sign my death certificate?
Why are chemo pills so expensive. What is in these pills that makes them so costly. Why are the CEO’S of these drug companies earning millions of dollars a year. With the outrageous prices regular people have to pay for medication.
Also, how much are the Drug store owners making off these drugs, and what is the mark up to the patient.
How much is the government making off these medications?
……….. IT IS ALL ABOUT MONEY….NOTHING MORE. NO COMPASSION……………
Is it not enough that people, who are suffering from cancer, on top of the suffering, now have to worry about having to pay huge medication bills. Leaving them with nothing but more heartache and financial worries.
ALL THIS SO THAT THE CEO’S WILL
…BE PAID MILLIONS OF DOLLARS EVERY YEAR AND ALWAYS GETTING BIG RAISES.
… OWN MANY BIG BOATS,
…OWN 3 or 4 BIG HOMES,
…TRIPS AROUND THE WORLD,
…MONEY TO WASTE.
…THE CANADIAN GOVERNMENT SHOULD BE ASHAMED AND DO SOMETHING…. NOW…. NOT LATER……
…THESE SO CALLED DRUG GIANT CORPORATIONS……. ARE MORE LIKE DRUG CARTELS.
The problem is simple to solve. More people, directly connected to those who choose drug coverage for the rest of us, need to suffer the same illnesses. It seems in the political world the only way anything gets done is through personal experience. I’m certain the decision making people would suddenly wake up and change the situation if their loved ones were denied a life saving drug.
So is the moral is that we should strive to be poor wasteful with our money, so that we don’t have to loose a lifetime of hard work and savings to pay for health care that – has been funded, and used to justify higher and higher taxation, but is in fact not available when we are stricken with the most terrifying diagnosis in health? Call me crazy but that’s what I read.
I am having problems with drug costs too. My background is I went to university (worked hard etc), then one week after I graduated I became seriously ill. I went from doctor to doctor. Doctors brushed me off initially. Finally I found out what was wrong. I now need 7 medications per day – a cost of $500/month. Like I said, I just graduated, no job yet, huge debt (fine, I picked that one), but the cost of my medication is killing me. I am in my 20’s. I have a chronic disease for life. Meaning $6000/year for life! Plus other costs, dental, etc.
I tried Trillium but only 1 of 7 drugs are covered. The Exceptional Access Program denied the other 6. There is only one substitute which does not work as well, and to be honest that is not the most costly drug I really need help with. I feel it’s a smoke screen to pretend we’re helping people, but the majority of medications people need are not covered.
I believe we need health and prescription medication for all people!
Thank you for reading.
If you are unable to work a full schedule because of this chronic illness or it interferes with daily activities of living, then you may wish to apply for Ontario Works. This will give you access to Ontario Drug Benefits. Then make an application to ODSP, where if you are accepted, they will provide you with a small income and medical benefits which are numerous … drugs. Dental. Glasses. Others as required. If you are denied, appeal & if necessary, force it to the tribunal. Be organized. Do it quickly as Doug Ford plans to tighten the qualifiers. Best of luck.
Comits a crime like walking into a bank with a note wait for the police goto jail gave it covered freedom or your life. If your in jail the government has a responsibility to pay. I’m in pain and unable to get treatment for it it wouldn’t be covered in jail I looked into it physio stuff like that won’t be provided
I had to pay $110,000.00 for a new 2-drug combination treatment which saved my life but all the Ontario drug programs refused to help me with any of the cost. Now I’m healed, unemployed, and bankrupt.
May I ask the name of the drugs that you used and the type of cancer you had?
Great information. Really puts it into perspective as we had to jump through many hoops to get funding for Revlimid. Unfortunately it has bled dry our work drug coverage. Doctors continually point the figure at the Ontario government but are suspiciously silent regarding the outrageous price of some of the cancer drugs such as mine. I suppose it might endanger those nice ‘unrestricted educational grants’ or speaking and consulting fees paid out by pharmaceutical companies. I’m no conspiracy theorist but I ‘sees it the way it is’.
Thanks.
David, my mother has just been prescribed Revlimid. The monthly cost in on the thousands. I would sincerely appreciate knowing how you attained funding for this medication. Thank-you.
Hi Jane,
My father has also been prescribed Revlimid, we’re you able to get funding for your mother? If so, may I ask what you did? Thank you.
You have to apply for trillium drug banifit.The hospital your mother getting treatment they should have given a form to fill once it is approved, you start getting Madison to be delivered to your home.This is what happened in my case.
Hi David,
My father has been recently denied Revlimid for his treatment. Are you able to discuss your process to receive funding for this treatment? Thank you.