Making sense of drug access

Patient stories important in development of national pharmacare strategy

“So many go without treatment due to unmanageable costs”

Mary Lou Robertson

By:  Mary Lou Robertson BA, BSW, RSW 

I will never forget him. He looked at me from across the clinic room, tears welling up in his eyes from anger, frustration or sadness. I couldn’t tell. His partner sat back in her chair and heaved a weary sigh, looked up at the ceiling and shook her head. “Now what? Why didn’t anyone tell us?”  I shared their frustration and didn’t have an answer.

This man had a malignant brain tumour. He and his partner had moved to another province to be close to family for support while he underwent treatment for his sudden diagnosis of glioblastoma. He was already part way through his treatment with chemotherapy.

Everything had been seamless.  All things considered, he was tolerating his treatment and doing ok. 

Their frustration, however, was learning he had no access to coverage for the next round of his chemotherapy treatment – which needed to start again in three days.

The patient who sat before me in clinic had lived in a province with seamless access. He had simply walked down the hall after seeing his oncologist, picked up his oral chemotherapy treatment, and went home.  When planning his move to another province, the team at his home hospital simply assumed we did things the same way. His question to our medical oncologist in our clinic that day at the end of his visit had been “where do I go pick up my drug?” That’s when my pager went off. 

This is just one of a myriad of stories I carry with me from the 10 years as a drug access navigator in a busy cancer clinic. On a daily basis, I would be called down to a clinic room to deal with one drug coverage gap after another.  I was constantly running to patch holes and figure a way out of a crisis. Many issues I dealt with were, and still are, “invisible” to the public and to policymakers. Gaps in access to drug treatments are not well understood or minimized for their impact on patient care.  

Those with malignant brain tumours represent the issues in treatment access that plague our health care system in Canada. They rely heavily on oral drug treatments and medical procedures that have a mix of funding approaches across Canada. The information they need to navigate access to these treatments is often “invisible”, and their ability to navigate through systems is often weighed by just getting through a host of cognitive and physical symptoms every day. Top that all off with a health system that doesn’t fully grasp the inequities in access for this group of patients.

Most patients with a malignant brain tumour rely on temozolomide, an oral chemo “pill” that now comes in both brand and generic forms.  It’s been around for more than a decade and is considered standard of care around the world. But it is not fully covered for patients in all provinces in Canada. Access is not seamless. 

A doctor recently approached me in disbelief after I raised this point in a meeting, “but it is covered across Canada for everyone…it’s standard of care!”  Not quite. 

Temozolomide is a pill. It is taken outside of hospital walls. As a result, some provinces and territories categorize this treatment as a “prescription drug” not a treatment. They treat temozolomide (and other oral cancer treatments) no different than a routine antibiotic or pain reliever you pick up at the drug store.   The responsibility for payment falls to the PATIENT

It’s expected most people will need help paying the thousands of dollars for a course of temozolomide treatment, as they would likely be off work after a sudden diagnosis. So, in those provinces where oral cancer treatments are like a prescription, the patient must go through weeks of applying to their insurance or a provincial drug plan to see if they can obtain coverage.  Even then, the end result is not necessarily 100% coverage. It depends on the insurance or provincial drug plan available to them.

Flip over to the other provinces who take responsibility for ensuring patients have access to primary cancer treatments, regardless of form. These provinces provide patients with access to temozolomide upon prescription in conjunction with the cancer clinic. There is no discussion of cost with the patient, no paperwork, and the need for drug access navigation is minimal. Access to the drug is seamless and the patient is able to concentrate on their health and home life.

This means that in one province, a person has seamless access and 100% coverage but in another province one does not. And most persons living with malignant brain tumours are not made aware of this until they are handed a prescription.

The patient in my clinic that day eventually got his temozolomide, but only after we worked out an arrangement with the home province to have it couriered across the country repeatedly for three straight months until his provincial health card kicked in and he could get on our public program. Then, I had to apply for what we called an “override” so he could get 100% coverage of the drug – a non-publicized arrangement we had made with the province years ago after watching so many go without treatment due to unmanageable costs. We also learned from that experience, and worked with our referral office to flag out-of-province transfers from that point on so we would be able to prepare patients prior to their move.

There are so many hidden stories in drug access in Canada. For so long, many have patched the system or advocated for “exceptions” so people can get the treatment they need. We need to engage with one another and learn from these stories as we move towards a national pharmacare approach. We need to ensure the systemic barriers of the past are not repeated.

Mary Lou Robertson is a social worker and former drug access navigator, who now consults with a range of stakeholders on drug access barriers in Canada. She has recently joined, and is an invaluable member of Brain Tumour Foundation of Canada’s Advocacy Committee, helping achieve better access to drugs and treatments for the brain tumour community.

7 Comments

  1. Your story hit home for our family, I remember going to the pharmacy at the hospital and thinking we are going to walk in and leave with medication that will help my husband battle this awful disease. We left with medications and a large bill even after the prescription had gone through benefits. One of the most upsetting things was other people going to the counter and only paying a few dollars or nothing made me feel sick inside that I wasn’t sure who we could keep our family a float and manager to pay for treatments. Everyone deserves equal treatment no
    Matter what type of cancer treatment it may be or what province you are located in. Without some drug companies offer patient assistance programs we could of done it without them.
    We thank everyone who is trying to make it fair for everyone fighting.

    • We are sorry to hear about this negative experience and together we will keep pushing for better access. Thank you for sharing and spreading more awareness of this issue.

  2. This is such a disservice to fellow Canadians. I know the BTFC has been pushing hard to have this treatment covered. Nationally, it would be a win for all of those who are already in such a difficult position. No one really knows the toll that exists financially when you or family members are going through treatment.

  3. This is why a national pharmacare program is essential. And your organization is essential to the discussions: make sure Dr. Hoskins includes you.

    • Mary Lou and the rest of the Brain Tumour Foundation of Canada Advocacy Committee will continue to speak up and advocate for the brain tumour community as the national pharmacare program moves forward.

  4. Thank you Mary Ann xxx

  5. Therefore, we could say that the superhero that most closely matches temozolomide is the strong and sturdy Incredible Hulk. How does temozolomide work? Much like the Hulk, temozolomide alters the DNA within cancer cells to make them “smash” themselves, which leads to cell death. 3 However, cancer is a clever disease because cells can become resistant to temozolomide. Therefore, we need another drug to join forces with temozolomide.

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