Across Canada, the price of a cup of coffee is usually the same whether you choose to drink it in the coffee shop or take it with you. Unfortunately, the same is not true for cancer therapy.  And, unlike for a casual cup of java, the stakes are much higher. Depending upon your province, taking cancer drugs “to go” can cost patients thousands of dollars. And increasingly, cancer patients simply don’t have the choice of an in-hospital “for here, please” alternative for their type of cancer.

Given the choice of equally effective cancer treatment in intravenous or take-home formulation, 53% of Canadians surveyed[1] showed clear preference for take-home medications. Indeed, these “take-home” oral and injectable medications will become the treatment of choice for most cancers – not as a convenient alternative to in-hospital care, but as THE standard of care – and for some cancers, the only form of treatment. Reports show that up to 60% of new cancer drugs in the pipeline are take-home medications.[2]  

Mind the Gaps: Expectations vs. Realities for Many Cancer Patients

How Canadians expect their cancer system to work for them may significantly differ from the reality they may encounter. Depending upon the province, patients may be surprised to encounter five gaping holes in their provincial cancer systems:

1.  Completely different provincial systems for IV and oral (or other take-home medications)

2. Widely different timelines and waiting periods to commence IV and oral cancer medications

3. Outdated paper-based systems in some provinces that, in 2014, still rely on hand-written prescriptions, mail and fax machines

4. Lack of ability to track and report on usage, effectiveness and side effects of all cancer drugs

5. Different levels of care: that not all cancer drugs are dispensed  to patients by oncology-trained professionals.

Gap 1: That intravenous and other formulations of cancer drugs would be funded the same.

The vast majority of Canadians (87%) surveyed expect provincially approved intravenous and take-home cancer therapies to be funded equally.  Unfortunately that is only the case in five of our ten provinces.  Access to take-home cancer treatments is vastly different from province to province. In some provinces (BC, AB, SK, MB) cancer treatments are funded equally: “the route of administration of the cancer treatment should not be a consideration for a different funding mechanism”.[3] Provinces such as Ontario and Nova Scotia do not primarily fund oral or injectable cancer medications. Patients needing take-home cancer medications fall back on a complex patchwork of partial assistance that may include their provincial drug plan (if eligible), private insurance (if any), manufacturers’ assistance programs (if any), fundraising (if possible), and personal savings and assets (if available). 

All the while, the patient’s neighbour next door is receiving intravenous cancer therapy at no cost, with no burden of income proof or onerous paperwork. Across Canada, the cost of a Health-Canada approved intravenous cancer drug that is listed on the provincial formulary, and used according to provincially-determined eligibility criteria, is administered without the patient paying any co-pays or deductibles. [4]

Gap #2: That Cancer Treatment Will Begin Within a Reasonable Period of Time

Most Canadians expect cancer drugs to be started quickly following an oncologist’s diagnosis and decision to commence treatment (92% expect to start treatment under 2 weeks)[5]. The reality is that is only true for patients who require IV cancer therapy. For intravenous therapies, cancer centres in Ontario, for example, are measured by Cancer Care Ontario on their ability to move the patient from consultation to treatment initiation within that 2-week window. No such measurement applies if the treatment involves drugs to be taken outside of the hospital.

For patients requiring take-home cancer therapy, the waiting time can stretch to 2 months and beyond, adding serious stress to an already-stressful cancer diagnosis. No data is available to track how long these processes take for an average patient. Each patient must face the byzantine maze of partial solutions and emerge many weeks later, almost miraculously, with an individualized solution to fund their drug according to their unique circumstances. Only then can they fill their prescription at a local pharmacy and begin treatment.

Gap #3: Outdated Systems that Still Require Onerous Paperwork

Outmoded patchwork systems still rely on faxes, mailed in forms, bureaucratic processes, and separate systems for ordering/approval and reimbursement of drugs.

Example: Ontario’s Paper-Driven System for Take-Home Cancer Medications

For the Physician:

a) For patients without private insurance, the oncologist must request access for the patient through the provincial drug program’s Exceptional Access Program (EAP), according to provincial eligibility criteria. Unlike the OPIS system for ordering intravenous drugs, this process is manual, requiring the oncologist to MAIL or FAX paperwork in for approval. If the request is denied due to error or omission, the paperwork must be re-submitted with additional information for case-by-case adjudication, which means even more delays to essential life-saving treatment.

b) Once the EAP approval from the provincial drug plan has come through by fax or mail, the physician might communicate that news to the patient, but sadly many patients return for their next appointment 6-8 weeks later still waiting for financial reimbursement to be finalized. Some patients, overwhelmed by their diagnosis, fail to meet with Drug Navigators or complete Trillium forms until the next appointment.

For the patient, following the diagnosis and decision to commence treatment:

a) The patient may need to book a meeting with a Drug Access Navigator (2/3 of cancer centres in ON have a Drug Access Navigator on staff specifically to help patients navigate through reimbursement mechanisms). In Nova Scotia, one Medication Reimbursement Specialist spends long days sorting out the paperwork for each case.

b) If the patient has private insurance, they may need to telephone to see if the drug is covered and to what extent. They must understand pre-authorization adjudication, co-pays, caps, and annual or lifetime limits. They may need to contact their employer for exceptional coverage allowances.

c) In Ontario, the patient must fill out forms for Ontario’s Trillium Drug Plan declaring not only their own income, but that of all members of their current household. This paperwork requires recent income tax returns for all household members, and, according to one patient who is a physician herself, is “seven times more complicated than filling out income tax returns”[6].  Young cancer patients who return home to live with their parents during treatment face bigger deductibles as their parents’ incomes are calculated into the overall expected household contribution.

Gap #3: That our Provincial Cancer Systems Would All Track the Usage and Effectiveness of Take-Home Cancer Drugs

A nationwide survey of oncologists and hematologists suggests that the inequities of funding of oral cancer medications may have a negative outcome on patients’ clinical outcomes and psychosocial quality of life.[7] Further, from a cancer systems viewpoint, the lack of integration limits some provincial cancer agencies from efficiently tracking and managing cancer drug utilization and measuring outcomes.  Less data means missed opportunities to strengthen and streamline the entire cancer system.

Gap #5: That all Cancer Drugs Would Be Dispensed to Patients by Oncology-trained Professionals

The point of care for cancer treatment matters. Cancer treatment, whether intravenous or through other formulation, requires expert oversight from all healthcare professionals from ordering to distribution.  In some provinces (BC, AB, SK), oral and take-home cancer medications are reimbursed at cancer agencies and through their regional distribution networks. In other provinces (MB, ON, and Atlantic Canada), cancer medications are dispensed through retail pharmacies that charge both markup and dispensing fees back to the province.

 For cancer medications taken at home, cancer patients have no less need of expert pharmacists to be assured of safety and receive drug-specific education for side effect management, adherence, handling, and safety.

While many might believe convenience of local dispensing to be a key factor, survey respondents reported that the place where they would expect to get the most accurate information about a drug’s safety was from an oncologist at the cancer centre (62%), followed by an oncology pharmacist at the cancer centre (23%). Only 7% of respondents felt that the most accurate information regarding a cancer drug’s safety would be realized at a pharmacist at a retail pharmacy.  

Unfortunately, in some provinces, any retail pharmacist can dispense take-home cancer drugs without specific oncology credentials or training in specific oncology medications. Sadly, some patients go without expert training and education. Basic safety instructions for safe handling (wearing gloves), storage (away from children, sunlight, heat), safe disposal,  and potential exposure to caregivers and family members can be missed.[8]

Conclusions and Recommendations

Canadians pay taxes with the understanding that those taxes contribute to healthcare that should be provided equitably, regardless of income, regardless of province.  Provincial Ministries of Health and Provincial Cancer Agencies have a responsibility to ensure that public funds are being dispersed fairly and without discriminatory practices.

In Ontario and each of the four Atlantic provinces, Health Ministries have allowed our cancer systems to fall behind the evolution of cancer therapy. Outmoded systems arbitrarily divide cancer patients into two groups:

• Those who will be treated without question or income testing
• Those who must jump through hoops, face delays in treatment, and finance part of their life-saving cancer treatment from personal savings or fundraisers

As Canadians, many of our lives have already been touched by cancer in some way. With the likelihood of being diagnosed with cancer approaching 50%, we simply cannot allow this inequity to continue – to treat some, and not treat others.

Even in tight fiscal climates, we cannot use “lack of budget” as the reason to perpetuate an artificially divided system that undermines basic principles of fairness and equality for all patients. We cannot accept anything but a full and patient-centred review of the principles of cancer drug coverage by those provinces whose practices currently discriminate against those needing oral/take-home medications:

• Ontario
• Nova Scotia
• New Brunswick
• Newfoundland and Labrador
• Prince Edward Island.

Because when it comes to cancer, whether the treatment formulation is “for here” or “to take out” should not make a difference for any patient or family – anywhere in Canada.

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Case Example of Steven A. Canadian Showing Different Out of Pocket Costs Across Canada

• 45 years old. Self-employed as a mechanic; has no private drug insurance
• Marital status: Married with children living at home.
• Diagnosis: advanced renal cell (kidney) cancer. Requires systemic therapy with an established, provincially listed cancer drug.  For this comparative case study, the drug is available in both intravenous and oral formulations. (In reality, many cancer drugs are available in one formulation – increasingly in oral/take-home formulation only.
• In Scenario A, Steven and his wife live with their two adult children for a combined household income of $200,000 less 30% taxes ($140,000 net for four adults)
• In Scenario B, Steven and his wife support two young children on a combined income of $120,000 ($85,000 net combined).
  

Out of Pocket Costs for the Patient and Family -  Across Canada, Same Drug

Note that patient assistance programs, when available, do not help with leftover costs for households with higher incomes, typically over $100,000 annually.