She went to Germany for a new brain cancer treatment. She wonders why she had to learn about it online

White Coat Black Art26:30ENCORE: A brain cancer patient went to Germany for treatment to extend her life

30-year-old Aisha Uduman was diagnosed with a rare form of brain cancer and told her life expectancy was less than a year. But she and her family wanted more than the treatment plan her doctors could provide, so they sought out promising alternative treatments in Germany.

This story was originally published in August 2023.

Before last summer, Aisha Uduman seemed perfectly healthy, living in Vancouver with her boyfriend and working as a federal fisheries biologist.

But in July 2022, she started experiencing short-term memory loss, double vision, headaches, nausea, and intense pressure on her skull.

By the fall, she was diagnosed with brain cancer: diffuse midline glioma, or DMG, with a rare H3 K27M mutation.

Even after surgery removed a portion of the tumour, she learned she likely only had eight to 11 months to live. She wasn't expected to make her 31st birthday.

"I would wake up every morning, ask [my boyfriend] if I had a tumour in my head, and start crying. So I don't remember this happening," Aisha told White Coat, Black Art.

Some new drugs, including ONC201 and ONC206, have shown early promise in fighting this specific type of cancer compared to the standard treatment that includes chemotherapy, radiation and surgery, but they're still being studied and not yet available in Canada. So Aisha went to Germany to get access.  

Aisha, her family and some experts say patients in Canada should be made aware of these novel or experimental treatments, so they can make the decision themselves on whether to take the risk, rather than find out about them through alternative channels.

"That is a big question of mine, like, why we weren't sort of told by them that this option that's more relevant for people like me exists, just not in Canada?" she said.

Finding ONC201

After surgery, Aisha was offered temozolomide, the standard chemotherapy drug for brain cancer, along with radiation treatment.

Her brother Dmitry Uduman, who has a bachelor's degree in cell biology and genetics, found studies that suggested it wasn't as effective in fighting the type of tumour Aisha had. 

He then found trial data about a different chemotherapy drug called ONC201, which is taken in pill form. Some patients in the trials saw tumours regress after treatment — including one that shrunk 96 per cent — and they had the same mutation as his sister. 

"So, you know, the chances are slim, but they're non-zero, which then makes it worthwhile trying to find how to be one of those outliers," Dmitry said.

Aisha has been taking ONC201 since January, as prescribed to her by cancer specialist Dr. Jurgen Arnhold, who is based in Koeningstein, Germany.

Dmitry picked up the first round of medication for her, and Aisha travelled to Koeningstein in April to pick up a refill herself. And she's returning to Germany this month for cancer-fighting dendritic cell vaccines.

Arnhold also has plans to prescribe her another drug called ONC206 in the future.

In February, an MRI showed that since diagnosis, after surgery and the other treatments, Aisha's tumour had shrunk by more than 75 per cent. The results from a second scan in April reported another "slight improvement." 

As of this month, she's lived past her 11-month life expectancy. Dmitry says other than fatigue from the treatment, she's in great condition.

The full treatment will cost her nearly a quarter of a million dollars in its first year alone — a price tag far out of reach of many Canadians. That doesn't include the cost of frequent travel to Germany, which takes its own toll. 

"Travelling to these parts of Germany, these aren't major cities that we go to. We have to fly into Cologne and then take a 12-hour train [ride]. And like, it's hard," Aisha said.

'Optimistic' about clinical trials

Leaving the country to find medical treatment elsewhere — whether life-saving or elective in nature — isn't new. A CBC report on what's known as "medical tourism" from as far back as 2004 said it was growing into "a worldwide, multibillion-dollar industry."

A page from the Canadian government's website says people may look for treatment outside the country for reasons ranging from lower costs to quicker access or treatments unavailable here in the first place.

It cautions that potential risks and costs from the resulting care may be higher, depending on medical standards and practices of wherever you're going to get that care.

Oncologist Dr. Sheila Singh, a neurosurgeon and director at the Centre for Discovery in Cancer Research at McMaster University, said she's "optimistic" about ONC201 and ONC206 as potential cancer treatments, but she also has concerns. 

"Most trials in malignant glioma, they tend to fail late, so they show promise in [Phase] 1 and [Phase] 2 trials, but the majority of them fail at [Phase] 3," she said. 

In order for a drug to be approved for wide use in Canada, it has to prove effective in a majority of patients, not a minority, she said.

U.S. biotechnology company Chimerix is currently enrolling for Phase 3 trials of the drug, and undergoing Phase 1 trials for ONC206.

Singh said there seem to be fewer clinical trials running in Canada compared to elsewhere around the world. That could be because of many factors, including a lack of drug manufacturers willing to sponsor the research, or Canada's smaller population — and therefore smaller market — compared to other countries or regions.

She's been petitioning Health Canada regulators to approve more clinical trials for new brain cancer treatments.

In an emailed statement, a department spokesperson for Health Canada responded, "The decision to seek authorization of a product in Canada rests with the manufacturer. When sponsors decide they want to market a drug in Canada, they submit a submission to Health Canada."

"Without an application from a sponsor, Health Canada cannot authorize a therapeutic product, even if that product is approved elsewhere in the world," the statement continued.

The 'faint hope decision'

Arnhold has provided treatment for patients looking for novel cancer treatments from places like Canada, Australia and Hong Kong.

He said a pharmaceutical law in Germany passed in 2006 known as the Nikolaus decision, or the faint hope decision, allows patients to access treatments if their condition is life-threatening, and if trials provide some evidence — however unlikely — that it might help them.

"We can order, based on a prescription, anything we like to give to a patient, if you're convinced that this would help him. This is individual law for individual health," said Arnhold.

Angela Scalisi, chair of the board of Brain Cancer Canada, said she hears from many patients and families looking for new cancer treatments abroad, even if they only offer a faint hope.

"If it's offering the same life expectancy, if not more so, then why not do a treatment that's not going to leave you bedridden, and not going to leave you paralyzed and not leave you cognitively impaired and in palliative care?" she said.

Learning about out-of-country treatments

Aisha said her Canadian doctors were open to talking about ONC201 after she asked them about it, even though they knew they couldn't access it for her.

Singh says doctors do their best to keep tabs on international research, but can't know it all when they're already burned out "trying to catch up with a thousand-patient waiting list" and other responsibilities at work.

"I think it's not that they're worried about the risk. I think what it is, is they're worried about presenting a treatment option that may not then be accessible to patients," she said.

"You don't want to offer something and then find out, oh, but it's going to cost you $45,000 to get those two treatments. You know, and sorry, it's not covered. That feels horrible."

Kerry Bowman, who teaches bioethics and global health at the University of Toronto, argues there's an "ethical obligation" for doctors to to inform patients of treatments available abroad if they're aware of them. 

"Was there true informed consent? Because you know, if a person is asking, 'What are my treatment options?' and they don't mention the fact that there are these other [international] options, is that an ethical concern?" he said.

Even if they're not easily available, he argues that it's always best for a patient to know all the options — even the longshots.

"That information should be put forward because informed decision-making, to get an informed consent, is incredibly important."

For now, Aisha is hoping to tackle her remaining bucket list while continuing her treatment in Germany. She's still speaking out for Canadians to get better access to novel cancer treatments — all while fighting for her own life.

"I want to live. I have lots of plans for my life, and things I want to do, so it's still worth living with some sacrifices made, right?" she said.

"Giving up wasn't really an option."