inside the desperate fight to access promising, but experimental, treatments for an aggressive brain tumour

less than a week after 33-year-old khola immigrated to canada from pakistan with her husband, faizan, and their two young children, she was diagnosed with grade 4 pediatric glioblastoma — a rare and aggressive brain tumour that primarily affects children.

khola’s doctor lobbied the government and several pharmaceutical companies to secure access to immune-based therapies — a type of treatment that stimulates a person’s immune system to recognize and destroy cancer cells — but those requests were denied.

it took faizan multiple attempts and many months before khola was granted compassionate access to an experimental treatment for her cancer. supplied

desperate to help his wife, faizan reached out to health canada, the minister of health, numerous pharmaceutical companies as well as aya can — a cancer advocacy organization. he worked closely with the advocacy group to file two more requests, both of which were rejected, but on their third attempt, the application was approved on compassionate grounds.

immunotherapy still considered experimental for glioblastoma

dr. farshad nassiri, neurosurgeon at the university health network , says that a person’s immune system is the best defence in the body — essentially, its job is to recognize anything that’s foreign, such as an infection or cancer, and to remove it. many types of cancer, however, use what are called “checkpoint proteins,” which allow the tumour to evade detection by the immune system. immunotherapy has been introduced to address this challenge.

in a clinical trial led by nassiri and his team, surgeons injected an oncolytic virus directly into a glioblastoma tumour. patients then underwent immunotherapy for two years following the procedure. more than 52 per cent of patients who underwent this treatment survived longer than 12 months , compared to the 20 per cent control rate, with the full dose treatment “well-tolerated” by patients, according to the study published in nature medicine . mri scans also showed that 50 per cent of patients experienced a reduction in tumour size, and for some individuals, the almost tumour completely melted away — those participants are still alive five years after the treatment, according to nassiri.

where is the support for middle-aged canadians?

in ontario, as many as 30 per cent of cancer patients aged 25 to 64 have no form of drug coverage, and individuals in this position have no choice but to lobby the government or apply for compassionate programs offered by pharma companies. the same scenario applies to accessing experimental drugs or treatment.

according to information provided by bristol myers squibb , a global biopharmaceutical company that develops some immune-based therapies, “manufacturer medical specialists consider what is currently known about the experimental drug to weigh the potential benefits and risks of providing the experimental drug for a particular condition.”

in ontario, as many as 30 per cent of cancer patients aged 25 to 64 have no form of drug coverage. supplied

the spirit to overcome any obstacle