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

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

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update: After this article was published, Jonathan McFarlane and his family were contacted that the treatment for his rare cancer was partially covered.

After weeks of fighting to get treatment for Jonathan McFarlane’s rare cancer, his family says they have received word that the Ontario government will pay part of the cost of treatment.

McFarlane, from Thunder Bay, Ontario, has completed a series of intensive radiation and chemotherapy treatments for anaplastic thyroid cancer. The 30-year-old woman is currently being treated with the immunotherapy drug pembrolizumab, sold under the brand name Keytruda.

On Wednesday morning, CBC News reported that McFarlane’s private insurance claim had been denied and the family is awaiting a case review decision by the Cancer Care Ontario Division of the Ontario Department of Health.

A weight has been lifted off my shoulders. He can really just focus on working on his health and not be so stressed about his own future.– Lori McFarlane on coverage of son Jonathan’s treatment

McFarlane’s mother, Lauri McFarlane, told CBC News that a representative from Jonathan’s care team contacted her and told her that cancer care ontario’s review determined that immunotherapy would be covered.

“It’s taken a huge weight off his shoulders. He can really just focus on working on his health and not be so stressed about his future,” she said.

“We strongly believe that all the community support has really helped us raise awareness.”

Jonathan has been on three doses of immunotherapy, and his mother said the family has already noticed a change in his condition. Each treatment costs about $9,000 and is required every 3-4 weeks.

She said her son’s treatment will be covered until March, but not the first three treatment sessions Jonathan has already had.

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

CBC News reached out to Ontario Health to confirm reports McFarlane says Jonathan will receive, but a spokeswoman declined to comment. refused to confirm the

“In early September, when he was first recommended the drug and found out it would be expensive, we thought, ‘I’ll do whatever it takes to make him better.’ And we retired. I just decided to run out of funds. I’ll do whatever it takes,” said Jonathan’s mother.

“Cancer can’t wait”

according to Canadian Cancer Societyan estimated 6,700 Canadians will be diagnosed with thyroid cancer in 2022. anaplastic carcinoma of the thyroid According to Cancer Care Ontario, thyroid cancer accounts for only 1.5% of all forms of thyroid cancer.

The McFarlanes have exhausted all options for funding immunotherapy. This type of thyroid cancer is extremely rare, and since Canada has not established a clear pathway for patients with the rare disease, experts say something is desperately needed.

“This is what they must do to save his life… Anyone who has cancer knows that cancer is not waiting, it needs to be treated immediately.” I will,” Lauri said.

CBC News reached out to Manulife, McFarlane’s private insurer, to tell them why the claim was denied, but a spokesperson said the company’s commitment to protecting customer privacy meant it had to He said he could not discuss specific details of the individual.

For privacy reasons, Ontario Health will not confirm whether McFarlane’s case is under review or comment on its status.

rare forms of cancer

Jonathan’s battle with this aggressive cancer began in April when he visited his family doctor with a cough. His blood tests showed many inflammatory markers, and by May a small bump appeared on the side of his neck.

As Jonathan underwent multiple tests, including biopsies and numerous scans, the lump on the side of Jonathan’s neck continued to grow and eventually weighed nearly a kilo.

Jonathan’s symptoms deteriorated rapidly, with the mass pressing against his trachea and esophagus, making swallowing difficult. He then endured nearly nine hours of surgery to remove his mass along with his thyroid.

McFarlane has been undergoing treatment for anaplastic thyroid cancer since April. His family says immunotherapy is improving his health, but the costs continue to rise. (Go Fund Me/Kristen Krebovek)

After the surgery, Jonathan and his family remained hopeful, but another lump began to regenerate near the same spot.

Through treatment and what his family calls the tenacity to keep fighting, Jonathan’s body continues to shrink. However, youth support workers continue to face a daunting array of side effects and symptoms.

These challenges include the emotional strain over the uncertainty of his treatment regimen with immunotherapy.

Lack of Data Barriers to Treatment: Physicians

Jonathan’s mother said insurance companies would not cover immunotherapy drugs because this type of cancer is rare.

Anaplastic carcinoma of the thyroid is so rare that there are few data on the therapeutic efficacy of pembrolizumab.

Dr. Joseph Del Paggio, Jonathan’s personal physician and an oncologist at the Thunder Bay Regional Health Science Center, said the lack of data could be a barrier to developing a treatment plan.

“If you can’t really present data to support the use of this drug, it’s going to be very difficult. I can see this being one of the major barriers here,” Del Paggio said.

Immunotherapy uses substances made by the body or in a laboratory to strengthen the immune system and help it find and destroy cancer cells. Evolving promising treatments include: more mainstream In cancer treatment including Canada.

Health Canada first approved Keytruda in 2015 and has approved it to treat 25 types of cancer.

“[Immunotherapy] Del Paggio said: Lung cancer and bladder cancer are certainly more serious than the effects seen in other types of cancer,” he said.

Data on the treatment of anaplastic thyroid cancer are forthcoming, Dr. Del Paggio said. This means that treatment planning relies on expert opinion from consultations with cancer centers and case reports.

The McFarlane family works to raise awareness of the processes that ensure the efficacy of rare disease treatments and immunotherapies. They hope that the drug will be recognized as a way to treat this rare form of cancer, and to increase support for Jonathan by funding or bringing more awareness to the problem. It is working.

“This immunotherapy should be available to everyone who needs it,” said Lauri McFarlane. increase.”

Promotion of national strategy

Lauri and her family also called on the public to make anaplastic thyroid cancer a cancer treatable with Keytruda through fundraising campaigns and a petition that gathered more than 25,000 signatures.

Dürhein Wornliger, chief executive officer and president of the Canadian Rare Disease Association, said there are many instances where families have had to go to great lengths to access and fund treatment.

families all over the country shared story How Accessing treatments for rare diseases can be difficult.

In 2019, the federal government pledged to invest up to $1 billion over two years. establish a national strategy Rare disease treatment.

Canada needs a national strategy for the care of rare diseases, said Dürhein Wongliger of the Rare Disease Agency of Canada. (CBC)

The Rare Disease Association of Canada has facilitated a planning session to build a national rare disease drug strategy in hopes of ensuring patients receive timely diagnosis, expert care and treatment. .

“We are really challenged by these circumstances. [recognize] We need to address this issue,” said Wong-Rieger. He has been advocating for such policies for more than a decade.

“Patients need to line up, demonstrate, and raise funds to get the right care, and we can’t just keep pouring in more patients.”

The Wong-Rieger organization has been involved in a three-year consultation to develop an orphan drug strategy. A conference in Toronto this week concluded with coming up with recommendations on how to implement such a program, with the hope of completing the first phase by spring.

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