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Chemotherapy daycare nurse Karly Sidak prepares for a session at the Princess Margaret Cancer Centre in Toronto. Myeloma patients have started a campaign to call on politicians to restart pricing talks for Carvykti, a type of CAR-T therapy.EDUARDO LIMA/The Globe and Mail
Nearly 1,000 Canadians with multiple myeloma and their caregivers have e-mailed elected officials asking that pricing talks resume for a cutting-edge immunotherapy that Health Canada approved nearly three years ago but which still isn’t available in this country.
The letter writers are pleading with the pan-Canadian Pharmaceutical Alliance, the organization that negotiates confidential discounts on drug prices on behalf of provinces and territories, to cut a deal for Carvykti, a bespoke, one-time-only infusion for the aggressive blood cancer.
The treatment, made by Johnson & Johnson Innovative Medicine, has a sticker price in Canada of $632,455. The final price would be lower if the parties agreed to a confidential discount.
“Patients are waiting for it. They need it,” said Martine Elias, chief executive officer of Myeloma Canada, the patient advocacy group leading the campaign. “Many patients are at the stage in their treatment where they have no more options.”
Ms. Elias said 955 patients and their family and friends had sent 2,140 letters to politicians across the country as of Sunday afternoon.
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Carvykti is a type of CAR-T therapy, versions of which are already publicly funded in Canada for some leukemias and lymphomas. The makers of CAR-T therapy draw the blood of individual patients, genetically engineer their soldier-like T-cells to attack their myeloma cells, then infuse the personalized cocktail into patients in a single bout.
Pricing negotiations for Carvykti collapsed in September, nearly two years after they began on Nov. 10, 2023. Health Canada first approved the drug on Feb. 9 of the same year.
The Globe and Mail highlighted Carvykti in a recent story probing why it takes 2½ years, on average, for new medicines to go from regulatory approval to being publicly reimbursed in Canada, longer than any other country in the G7.
Although patients with robust private insurance or deep pockets can often access new drugs shortly after they’re authorized by Health Canada, patients who rely on federal, provincial or territorial drug plans must wait while new drugs run a gauntlet of four different agencies.
In the case of Carvykti, the sticking point was reached as Johnson & Johnson, formerly Janssen Inc., negotiated pricing with the pCPA, an organization that saved Canadian public plans nearly $4-billion last year alone through confidential discounts off the retail prices of brand-name drugs.
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Jas Velic looks on as lab technician Sasha Gaye Phillips prepares to draw his blood before a weekly chemotherapy session. Hematologist Darrell White says nationwide negotiations, over provincial talks, should be the norm while advocating for Carvykti.EDUARDO LIMA/The Globe and Mail
“Negotiations are two-way streets and all negotiating parties play an important role in reaching agreements. We want to assure patients, caregivers and clinicians that we committed significant time and resources to this file and were eager to come to an agreement,” Mauro Chies, chief executive officer of the pCPA, said in a statement.
“While the letter-writing campaign is focused on the government level, we hope the message is also being received by the manufacturer. Should Janssen Inc. want to come back to the table and re-engage in a negotiation, they can submit an unsolicited proposal, which we would welcome.”
The pCPA operates on a consensus model, meaning all provincial, territorial and federal drug plans must agree on price. Federal drug plans cover special populations such as veterans, First Nations and Inuit.
Alaine Grand, Johnson & Johnson’s vice-president of market access and strategic customers, said in a statement that the company is open to cutting deals with individual jurisdictions that want to offer CAR-T for myeloma.
“We understand that several provinces were champions in favour of bringing Carvykti to patients rapidly. We will continue working with willing provinces – whether individually or as a group – in efforts to secure product listing agreements for their constituents,” she said.
Darrell White, a hematologist at the Queen Elizabeth II Health Sciences Centre in Halifax, said he would prefer provinces stick together through the pCPA to ensure patients in small provinces such as his are not left out.
The Canadian Myeloma Research Group, which Dr. White chairs, is also advocating for nationwide talks to resume on Carvykti.
“It’s very disappointing from the patient point of view,” Dr. White said of the lack of access to Carvykti. “CAR-T, frankly, is just one of many advances. There’s nothing all that magical about it, but it certainly is a very good treatment. I think we will have it eventually. It’s just very slow in Canada compared to what’s available in the U.S.”
Dr. White has received funding from pharmaceutical companies, including Johnson & Johnson, as has patient group Myeloma Canada.
Editor’s note: This article has been updated to correct the title of Martine Elias, chief executive officer of Myeloma Canada.
