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Funding for life-saving drugs denied by BC health officials as couple struggle to fund their share

Entrectinib, a target drug that tested positive in tumors with the same gene expression, costs $ 10,200 per month

Manuel and Samia Perez with their 10-month-old daughter Amalia.
Manuel, Samia Perez, and her 10-month-old daughter Amalia.Photo courtesy of Jason Payne /PNG

Compensation for potentially life-saving drugs in Vancouver Was rejected by the man. Stage 4 cancer despite being approved by Health Canada and prescribed by an oncologist.

"His oncologist was very excited when she told us about it," said Manuel Perez's wife, a 43-year-old cancer patient. Samia Perez said. "She said the drug performed well in pediatric patients, reduced tumors by 80% and had a cure rate of 20%. So far, she has used the word" treatment "with us. It never happened.

It felt like a turning point for the couple, the parents of their 10-month-old daughter.

The drug, entlectinib, costs $ 10,200 per month, so B.C. Oncologists immediately applied for compensation for the cancer under the agency's compassionate access program.

Within a few weeks, they got the answer: No. There was no explanation.

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

"We can't afford it," said Samia, 38, who is taking maternity leave from her job as a marketing expert. "If it's approved and regulated, why isn't it covered?"

Web developer Perez said in 2018 when he felt a lump in his lower abdomen. I was in the gym. A local walk-in clinic doctor speculated that it was a hernia and did not order ultrasound. But Samia's intuition for hertold her something was wrong. Manuel went back and requested ultrasound and was told he didn't need it right away.

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

When I traveled to Spain to visit Perez's family, the lump was still there .. Samia decides to pay for her ultrasound. Her Samia's Spanish was rudimentary, but she was able to see the doctor's face during the scan.

"I knew it was bad."

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

Perez is a stage 3 soft tissue fibrogenic small round cell sarcoma with a 12 cm mass growing on the outside of the colon, a malignancy rarely seen in adults. I have cancer.

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

Her family has begun a horrifying odyssey of diagnosis, second opinion, and soaring costs.

Perez was successfully operated on and started chemotherapy in early 2019, but five months later the cancer recurred and is now in stage 4. Perez underwent another abdominal surgery and completed 6 rounds of postoperative chemotherapy. His scan returned clean.

"That meant we felt like we had a chance as a family and thought that this could all be late. Manuel threw away all the chemotherapy clothes. (Because I lost weight, I got smaller). This was a new beginning, "Samia said.

Amalia was born in October 2021 with her dad's light brown eyes and a big smile. However, a May 2022 scan showed that her cancer had recurred for the third time. Their surgical oncologist said they would think out of the box — entlectinib, a target drug that tested positive in tumors with the same gene expression as Manuel, may be the answer, but the cost to young families. Is astounding.

B.C. Cancer told Post Media that the state is awaiting a decision by Canada's Drug Technology and Health Authority (CADTH). Funding will be provided.

"We do not anticipate this process," B.C. said. Statement cancer. "The final decision is scheduled for later this year."

The couple are now paying for the medicine themselves. My cousin startedGoFundMe

. Samia wants change not only for Perez, but for other families waiting for approved life-saving medicines.

"Family does not have to experience this," Samia said.

"It's very frustrating to know that you have choices and aren't available," Perez said. "I want to see my daughter grow up. I want to live."

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

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