A Thunder Bay family went public to get $300K cancer therapy covered. They say now Ontario will help

UPDATE: After this story was published, Jonathan McFarlane and his family were contacted to say the treatment for his rare cancer would partially be covered. Following is the latest news.

After weeks of fighting to get coverage for Jonathan McFarlane's therapy for a rare cancer, his family says they havereceived word that the Ontario government will cover part of the costs of 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 treatmentsfor anaplastic thyroid cancer. The 30-year-old isnow being treated with the immunotherapy drug pembrolizumab, which is sold under the brand nameKeytruda.

On Wednesday morning, CBC News reported the claim through McFarlane's private insurance was deniedand the family was waiting fora decision on a case review through the Ontario Health Ministry's Cancer Care Ontario division.

A large weight off his shoulders. He can focus on truly just working on his health and not being so stressed about his future.- Lauri McFarlane on son Jonathan's treatment coverage

McFarlane's mom, Lauri McFarlane,has since told CBC News a representative from Jonathan's care team contacted her to say Cancer Care Ontario's review has determined the immunotherapy would be covered.

"A large weight is off his shoulders. He can focus on truly just working on his health and not being so stressed about his future," she said.

"We strongly believe that all the community support really helped to bring awareness to it."

Jonathan hasreceived three doses of the immunotherapy drug, andhis mothersaid their family is already noticing a difference in his condition. Each treatmentcosts nearly $9,000and is required every three to four weeks.

She said her son's treatment will now be covered until March, but they will not be reimbursed for the first three treatment sessionsJonathan has already received.

His case will also be reassessed in March, Lauri said.

CBC News reached out to Ontario Health to confirm the coverage the McFarlanes say Jonathan will receive, but a spokesperson would not confirm details.They said questions should be directed to the patient's care team. It previously declined to confirm details of McFarlane's case, citing privacy concerns.

"Early September when he was first recommended for the drug and we found out the cost, we thought, 'Well, we're gonna do whatever it takes to get him better.' And we just decided we would use up our retirement fund. We'll do whatever we need to do," said Jonathan'smom.

'Cancer doesn't wait'

According to the Canadian Cancer Society, an estimated 6,700 Canadians will be diagnosed with thyroid cancer in 2022. Anaplastic thyroid canceraccounts 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 the immunotherapy 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.

"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," Lauri said.

CBC News contacted Manulife, McFarlane's private insurance company,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'scase 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 bumpappeared on the side of his neck.

As he went through multiple tests, including biopsies and numerous scans, themass 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 withhis thyroid.

After the surgery, Jonathan and his family remained hopeful, but anothermass 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 ofpembrolizumabintreating 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 Paggiosaid.

Immunotherapy uses substances made by the body or in a laboratory to boost the immune system, to help locateand destroy cancer cells. The evolving and promising therapy is becoming more mainstream in cancer treatment, including in Canada.

Health Canada first approved Keytruda in 2015and has so far authorized it to treat25 types of cancers.

"[Immunotherapy] has caused a paradigm shift in treating certain types of cancers," Del Paggiosaid. "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 cancerthat are arguably more substantial than the effects we're seeing in other types of cancers," he said.

Data on treating anaplasticthyroid cancer is forthcoming, Del Paggio said, which means a treatment plan relies on expert opinions through consultation with cancer centres and case reports.

The McFarlane family is working to raise awareness about the process of getting coverage for rare disease treatmentand the effectiveness of immunotherapy. They're workingto drum up support for Jonathan,either through funding or by bringing moreawareness tothe 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

Lauri and her family have also appealed to the public through fundraising campaignsand a petition that hasgarnered over 25,000 signatures, intheir efforts to haveanaplastic thyroid cancerrecognized as a treatable cancer with Keytruda.

Durhane Wong-Rieger, chief executive officer and president of the CanadianOrganization 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 storiesof how difficult it can be to access treatment for rare diseases.

In 2019, the federal government committed to invest up to $1 billionover two years to establishaNational Strategy for Drugs for Rare Diseases.

The CanadianOrganization for Rare Disordershas been facilitating planning sessions to build the country'srare disease drug strategy, withhopes 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. Itwrapped up a conference in Torontothis week that included coming up with recommendations on how to implementsuch a program, with the hope of completing the first phase by the spring.