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Life-saving drug denied by health officials, couple struggle to fund their part

Entrectinib, a targeted drug with positive results in tumors with the same gene expression, costs $10,200 per month

Manuel and Samia Perez with their 10-month-old daughter Amalia.
Manuel and Samia Perez with their 10-month-old daughter Amalia. Photo Credit: Jason Payne /PNG

The drug is approved by Health Canada and his Stage 4 cancer, even though it was prescribed by an oncologist.

,” said Samia Perez, wife of 43-year-old cancer patient Manuel Perez. "She said the drug had good results in her pediatric patients, with an 80% reduction in tumors and a 20% cure rate. No one has ever used the word 'cure' to us before. There was none.”

It felt like a turning point for the couple, who are parents to a 10-month-old daughter.

Because the drug Entrectinib cost him $10,200 a month, a BC oncologist Cancer immediately applied for compensation under the agency's Compassionate Access program.

Within a few weeks, I had an answer. No. No explanation was given.

Pharmaceutical company Roche has agreed to cover 60% of the cost, but the couple are struggling to raise $4,000 a month to cover the rest.

"I can't afford that," said Samia, 38, who is on maternity leave after finishing her job as a marketing professional. "If it's approved and prescribed, why isn't it covered?"

Web developer Perez felt a lump in his lower abdomen at the gym in 2018. A local walk-in doctor at his clinic surmised it was a hernia and did not order an ultrasound. But Samia's hunch of her told her that something was wrong. Manuel came back, asked for an ultrasound and was told it wasn't needed immediately.

Manuel and Samia Perez with their 10-month-old daughter Amalia.
Manuel and Samia Perez with 10 month old baby daughter Amalia. Photo by Jason Payne /PNG

When traveling to Spain to visit Perez's family, the lump was still there . Samia decides to pay for her ultrasound. Her Samian Spanish was rudimentary, but she could see her doctor's facial expressions during the scan.

"I knew it was bad."

Five days later, the couple returned to Canada and Perez was rushed for surgery.

Perez has his 12-cm mass outside the colon, which is stage 3 soft-tissue desmoplastic small round cell sarcoma, rarely seen in adults. It is a progressive cancer.

Perez did not fit the typical patient picture of cancer, making it more difficult to treat.

The family embarked on a terrifying journey of diagnosis, second opinions, and soaring costs.

Perez had a successful surgery and started chemotherapy in early 2019, but five months later the cancer returned and is now in Stage 4. Perez underwent another abdominal surgery and postoperative chemotherapy he completed six times. His scan came back clean.

"It meant everything to me as a family to feel like I had a chance, to think that everything could be delayed. It was a new beginning,” Samia said.

Amalia, with her father's bright brown eyes and big smile, was born in October 2021. Their surgical oncologist told us to think outside the box — although entrectinib, a targeted drug that showed positive results in tumors with the same gene expression as Manuel's, could be the answer. , the cost of a young family is staggering. He said he was waiting for a decision by the Department of Technology and Health (CADTH). provide funding.

"We do not preempt this process," he said in the B.C. Cancer statement. "A final decision will be made later this year."

The couple are now paying for their own medicines. A cousin started a GoFundMe

Samia wants change, not just for Perez, but for other families waiting for an approved life-saving drug .

"No family should go through this," Samia said.

"It's very frustrating to have options and know they're not available," Perez says. "I want to see my daughter grow up. I want to live."

CADTH did not respond to Postmedia's inquiry by press time.

dryan@postmedia.com

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