inside the desperate fight to access promising, but experimental, treatments for an aggressive brain tumour
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standard treatments for glioblastoma left khola with severe side effects and did little to shrink the tumour.
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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.
within days, khola underwent surgery, followed by six weeks of chemotherapy and radiation. but the gruelling treatment that caused severe side-effects, including difficulty breathing and drops in blood pressure, failed to shrink the malignant tumour.
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.
immune-based therapies have been successful in treating other cancers, such as advanced melanoma and advanced non-small cell lung cancer, but none have been approved to treat glioblastoma. in fact, immunotherapy in this space is considered experimental, making access to it particularly challenging.
it took faizan multiple attempts and many months before khola was granted compassionate access to an experimental treatment for her cancer.
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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.
“from november until april, it was a full-fledged campaign to help my wife gain access to immunotherapy,” says faizan. “we were successful only after her doctor presented additional evidence and we had an advocacy group attached to us.”
since may, khola has been taking two different immunotherapy drugs, both of which are administered intravenously at the hospital, roughly 14 days apart. one of the drugs is a tumour-starving treatment and the other is designed to slow down disease progression.
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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.
the cutting-edge treatment has been shown to be effective against several types of cancer, but more research is needed to determine how it may best benefit glioblastoma patients. nassiri says that surgery, chemotherapy and radiation remain the standard of care for the disease, and that immunotherapy isn’t used as a stand-alone measure as glioblastoma tumours holds few immune system cell. the blood-brain barrier, which keeps drugs out of the brain and the tumour, also limits the effectiveness of the treatment if used without some of the other interventions. the good news is that in the future, immune-based therapies could be combined with new and existing treatment options.
“oncolytic viruses are gaining a lot of traction in the field of oncology,” he says. “they’re viruses that have been engineered to attack cancer cells, cause cancer cell death and lead to the recruitment of immune cells, which then get infiltrated into the tumour environment.”
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.
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the clinical trial also enabled researchers to further understand the genetic makeup of the malignancy and they found that patients who responded best to the treatment had a tumour with the “right balance” of pro-inflammatory and anti-inflammatory markers. nassiri suggests that in the future, this knowledge could potentially help surgeons select patients who would benefit most from this type of a treatment, but more research is still needed.
“the way we’ve treated glioblastoma hasn’t essentially changed since 2005,” he says. “there are other trials where exciting results have come through, including this trial, but the ultimate test will be a larger randomized phase 3 trial. we’re excited, and cautiously optimistic to see these results. it’s the reason why we do what we do.”
where is the support for middle-aged canadians?
khola and faizan didn’t expect to find that, in canada, young people with cancer aren’t as supported as children and older adults who are affected by the disease.
“young adults are preparing to launch themselves into the world, and this group is very much ignored when it comes to the cancer diagnosis,” says faizan.
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.”
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in ontario, as many as 30 per cent of cancer patients aged 25 to 64 have no form of drug coverage.
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chantale thurston, a patient advocate with aya-can who worked with khola and faizan, says that pharma companies will not approve requests for experimental drugs unless there is strong and clear evidence that suggests that the treatment might work for the patient — even if it’s their last hope. thurston explains many young adults with cancer don’t have the experience or knowledge to navigate requests for experimental treatment, and that a lack of mental health resources, physiotherapy and support in care during and after surgery and treatments are also a challenge. aya can, she says, is made up of patients who want to see change in all of these areas — the organization, which has operated on volunteer hours since 2018, is looking for sources of funding and is open to donations.
thurston says that to improve the cancer experience for young adults, the government must prioritize this group, lower screening guidelines for some type of cancers and invest in psychosocial care at cancer centres across the country. physicians must also listen to the concerns of their young adult patient population instead of dismissing their symptoms, and treatment should be available in every province.
the spirit to overcome any obstacle
faizan and khola moved in with faizan’s sister who helps look after their young kids during their many trips to the hospital. it has been a challenging time for the entire family, navigating this critical diagnosis on top of the move to a new country — one of their children has developed a speech delay due to the stress. but, despite their many challenges, the family is determined not to let the disease take over.
“i can talk for hours about how hard this was, emotionally and physically, but what has kept me going is the faith that comes from my religion,” reveals khola. “the meaning of my arabic name is ‘warrior’, and i just knew that that’s who i needed to be.”
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maja begovic is a toronto-based writer.
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