Jonathan McFarlane is fighting a rare form of cancer as his family does everything they can to get the costs covered for the treatment they believe will give their son a shot at beating the disease.
McFarlane, from Thunder Bay, Ont., has wrapped up a gruelling series of radiation and chemotherapy treatments for anaplastic thyroid cancer. The 30-year-old is now being treated with the immunotherapy drug pembrolizumab, which is sold under the brand name Keytruda.
The drug, however, has yet to be covered under provincial drug programs or his private insurance, which would leave him with an estimated $305,000 bill by the time he’s completed the treatment.
“Pretty much just shock and anger,” said Lauri McFarlane, Jonathan’s mom, describing their emotions as they discovered his claim for coverage has been denied by his private insurance provider, Manulife.
“We were upset,” she said. “It’s just unfair.”
We cannot continue to have patient after patient needing to line up, needing to demonstrate, needing to set up funds in order to get the right treatment.– Durhane Wong-Rieger, Canadian Association for Rare Disorders
According to the Canadian Cancer Society, an estimated 6,700 Canadians will be diagnosed with thyroid cancer in 2022. Anaplastic thyroid cancer accounts for just 1.5 per cent of all forms of thyroid cancers, according to Cancer Care Ontario.
The McFarlanes have been exhausting every option to have Jonathan’s immunotherapy treatment funded. They have been met with barriers due to how rare this type of thyroid cancer is, and because there is no clear pathway established for rare disease patients in Canada, something experts say is desperately needed.
“I’m hoping we get an answer for Jonathan soon,” said McFarlane. “This is what they need to do to help save his life … Anyone who suffered cancer, they know that cancer doesn’t wait and it’s something that needs to be treated immediately.”
CBC News contacted Manulife to discuss why the insurance claim was denied, but a spokesperson said specific details of any individual cannot be discussed due to the company’s responsibility of protecting the privacy of its customers.
Ontario Health also would not confirm if McFarlane’s case was under review or comment on its status, due to privacy reasons.
A rare form of cancer
Jonathan’s battle with this aggressive form of cancer began in April, when he visited his family doctor with a cough. His blood work showed many inflammatory markers, and by May, a small bump appeared on the side of his neck.
As he went through multiple tests, including biopsies and numerous scans, the mass on the side of Jonathan’s neck continued to grow, eventually weighing nearly one kilo.
Jonathan’s symptoms quickly worsened, while the mass pushed on his trachea and esophagus, making swallowing difficult. He then endured a nearly nine-hour surgery to have the mass removed, along with his thyroid.
After the surgery, Jonathan and his family remained hopeful, but another mass close to the same spot started to regrow.
Through treatment, and what his family calls a persistence to keep fighting, Jonathan’s mass continues to shrink. But the youth support worker continues to face an array of challenging side-effects and symptoms.
Those challenges include the emotional strain around the uncertainty of his treatment plan with immunotherapy.
Lack of data a treatment barrier: doctor
Jonathan’s mother said the insurance company won’t cover the immunotherapy drug due to the rarity of this type of cancer.
There’s also little data showing the effectiveness of pembrolizumab in treating anaplastic thyroid cancer, due to how rare it is.
Dr. Joseph Del Paggio, Jonathan’s doctor and an oncologist at the Thunder Bay Regional Health Sciences Centre, said lack of data can be a barrier in creating treatment plans.
“It’s going to be very challenging when you can’t present really any data that supports using this drug. I see this is one of the major barriers here,” Del Paggio said.
Immunotherapy uses substances made by the body or in a laboratory to boost the immune system, to help locate and destroy cancer cells. The evolving and promising therapy is becoming more mainstream in cancer treatment, including in Canada.
Health Canada first approved Keytruda in 2015 and has so far authorized it to treat 25 types of cancers.
“[Immunotherapy] has caused a paradigm shift in treating certain types of cancers,” Del Paggio said. “But I think that’s really the key here … that this is effective in certain types of cancers, and so far we’ve seen effects in cancers like lung cancer, bladder cancer that are arguably more substantial than the effects we’re seeing in other types of cancers,” he said.
Data on treating anaplastic thyroid cancer is forthcoming, Del Paggio said, which means a treatment plan relies on expert opinions through consultation with cancer centers and case reports.
The McFarlane family is working to raise awareness about the process of getting coverage for rare disease treatment and the effectiveness of immunotherapy. They’re working to drum up support for Jonathan, either through funding or by bringing more awareness to the issue, in hopes the drug is recognized as a way to treat this rare form of cancer.
“This immunotherapy should be available to everyone that requires it and needs it,” Lauri McFarlane said. “I call it a miracle drug because it’s helped my son a lot.”
Push for a national strategy
Jonathan has received three doses of the immunotherapy drug, and his mother said their family is already noticing a difference in his condition. Each treatment costs nearly $9,000 and is required every three to four weeks.
Lauri and her family have appealed to the public through fundraising campaigns and a petition that has garnered over 25,000 signatures, in their efforts to have anaplastic thyroid cancer recognized as a treatable cancer with Keytruda.
Durhane Wong-Rieger, chief executive officer and president of the Canadian Organization for Rare Disorders, said there are many examples of families having to go to extraordinary lengths for treatment access and funding.
Families across the country have also shared stories of how difficult it can be to access treatment for rare diseases.
In 2019, the federal government committed to invest up to $1 billion over two years to establish a National Strategy for Drugs for Rare Diseases.
The Canadian Organization for Rare Disorders has been facilitating planning sessions to build the country’s rare disease drug strategy, with hopes of getting patients access to a timely diagnosis, specialist care and therapies.
“We are really challenging these situations. I think governments [recognize] we do have to address this problem,” said Wong-Rieger, who has been advocating for such a policy for more than a decade.
“We cannot continue to have patient after patient needing to line up, needing to demonstrate, needing to set up funds in order to get the right treatment.”
Wong-Rieger’s organization has been involved in three years of consultations to develop the rare diseases drug strategy. It wrapped up a conference in Toronto this week that included coming up with recommendations on how to implement such a program, with the hope of completing the first phase by the spring.
Family calls next steps a ‘waiting game’
Until a clear pathway and a program like a national rare disease drug strategy are established, families like the McFarlanes have to continue to fight for drug coverage.
The family has disputed the claim denial through Manulife, escalating the issue to the company’s ombudsman. They’ve also reached out to local politicians, including Thunder Bay MPP Lise Vaugeois and MP Patty Hajdu.
Vaugeois said she understands how distressing this situation is, and her office is working to help the McFarlanes navigate the provincial systems.
Their next step involves Ontario’s Exceptional Access Program, but because the immunotherapy drug is an intravenous treatment, Jonathan is not eligible. Now the family is waiting on a direct inquiry to Cancer Care Ontario through a case-by-case review, which is currently in progress.
Through this process, Ontario Health administers a case-by-case review program on behalf of the Ministry of Health, which considers funding requests for therapies used in the treatment of rare cancers or clinical circumstances.