A 24-year-old Airdrie woman living with stage 4 cancer says she’s been denied the opportunity to participate in a potentially life-saving clinical trial after U.S. President Donald Trump made funding cuts to the National Institute of Health (NIH).
“I’ve run out of options here in Canada; it’s just devastating,” said Brooke Kajdy
Kajdy was supposed to receive a clinical trial at NIH Maryland next month.
“Now I can’t go there due to their funding being cut,” she said.
“My care team has submitted a plea to get their trial drugs sent here to me, but we are waiting for it to be approved.
“I am absolutely terrified.”
Kajdy was diagnosed with an aggressive form of cancer while pregnant in June of last year.
Following a biopsy on her hip, it was confirmed she had stage 4 diffuse large B-cell lymphoma, characterized as a blood cancer that spread outside the lymphatic system into organs such as the liver or lungs or into the bone marrow.
Kajdy was able to give birth to her now 19-month-old son Theo while still receiving chemotherapy treatments.
Her team of oncologists have since recommended she participate in a non-chemotherapy treatment regimen through the NIH, which has achieved full remission for some people with her cancer.
“This was supposed to be my life-saving option, and I do know that there are a few private trials still available, but those can cost hundreds of thousands or millions of dollars to self-fund,” Kajdy said.
“When this funding cut was first announced, a lot of people thought Trump was just blowing smoke to try to get a rise out of people, but when you’re in this situation where it’s life or death and it can potentially affect you, it certainly hits different.”
Trump announced the cuts in January, limiting the amount of indirect funding for research projects to 15 per cent.
That resulted in the cancellation of grant reviews and programs being removed from NIH, including the life-saving clinical trial Kajdy was eligible for.
On Wednesday, a U.S. federal judge appointed by the previous administration blocked the Trump administration from drastically cutting medical research funding.
U.S. District Judge Angel Kelley filed a preliminary injunction that puts the cuts on hold for longer while separate lawsuits proceed.
The NIH is the main funder of biomedical research and awarded about $35 billion in grants to research groups last year.
The total is divided into direct costs, covering researchers’ salaries and laboratory supplies, and indirect costs, considered to be the administrative and facility costs needed to support that work.
‘Absolutely mind-boggling’
A freeze on U.S. federal funding for scientific research has created what one immunologist is calling an “incredibly worrisome” state of affairs for Canadian cancer patients.
Dawn Bowdish, a McMaster University professor of medicine and the executive director of the Firestone Institute for Respiratory Health, says clinical trials are massive and extremely expensive endeavours.
“For many patients, this is their last and best shot to get a treatment that will help them,” Bowdish said.
“There’s no evidence that any of these cuts were thoughtfully implemented, and it is absolutely mind-boggling to me.
“If you had asked me a few months ago if life-saving cancer research or drugs for diseases that are fatal would ever be cut, I would have said there’s no politician on the planet who would ever do such a thing.”
Bowdish says the NIH has undergone mass firings and cuts to research.
The loss of funding has now put Canadian research jobs at risk as well.
“As Canadians, many of us have what are called subcontracts where we work with NIH research, and our institutes are telling us not to spend more money than we can afford to absorb because we just don’t know if we’re going to be getting the payments for that research,” Bowdish said.
“Where this is going to have the most immediate and devastating impact on people’s lives is in clinical trials, because so many people just have to go through a trial to have any hope for getting through a serious disease or condition.
“Without these, we can’t move drugs or treatments to approvals.”
Assessing all options
Nadine Prevost, a senior director and researcher with the Leukemia and Lymphoma Society of Canada, calls these situations “incredibly unfortunate,” but says Canadian patients still have full support.
“We invite people who would be in that type of situation to contact us so we can assess if there’s other clinical trial opportunities available to them,” Prevost said.
“We can also help them navigate their other options, to contact their health-care team to assess what we can do without any delays because blood cancer is life-threatening, and delays are far from optimal.”
Prevost says research within Canada is being encouraged amid American funding cuts.
Alberta Cancer Foundation CEO Wendy Beauchesne says losing care options or funds for research points to the need and further desire for her organization to grow the number of clinical trials available in Western Canada.
“One of our oncologists who runs a clinical trials unit told me that in a career, you might help 5,000 patients, but if you have one successful clinical trial, you’re helping hundreds of thousands of patients, so they truly are the lifeblood of propelling forward innovation for cancer treatments,” she said.
“We are punching way above our weight in terms of the number of clinical trials we’re able to offer to patients already, but we are on a mission to keep advancing that as much as we can.”
Beauchesne says Edmonton has more than doubled the national average of clinical trials offered to patients, and Calgary’s new Arthur J.E. Child Comprehensive Cancer Centre is also on a path to triple the number of clinical trials currently offered.
Alberta Health Minister Adriana LaGrange says her heart goes out to families who are in need of cancer care.
She says her government is committed to providing quality and accessible health care, including cancer prevention, screening and treatment to all Albertans, but “there is always more work to do.”
“We are continuing to refocus Alberta’s health-care system to ensure Albertans can access appropriate care, with Alberta Health Services focusing on acute care priorities like cancer care,” LaGrange said in a statement to CTV News.
Currently, there are two sources of funding for Albertans who receive medical treatment outside Canada: funding through the Out-of-Country Health Services Committee or partial coverage through the Alberta Health Care Insurance Plan (AHCIP).
Services must be insured health services that are not available in Canada.
However, services that are experimental, undergoing clinical trials or fall within the category of applied research are not eligible for funding.
