As a Thunder Bay man battles a rare cancer, his family fights to get $300K treatment covered

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 unjust."

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 that 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.

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.