Helene Lalonde, who has been battling cancer for the last 14 years, is the leader of a support group for people affected by multiple myeloma.
Myeloma is a cancer that forms in plasma cells, and while it is treatable, it is still incurable.
Lalonde is hoping her next treatment will be Carvykti — a therapy she believes could give her more time with her daughters.
“Sept. 21, 2012… the date I was told I had multiple myeloma, a cancer I had never heard of,” Lalonde said.
“To hear that there is a potential treatment that’s a cure.. mindblowing, and means I might be able to walk them down the aisle and hold my grandchildren, so it is hope. For us to fight to get this approved is potentially to save our lives.”
Carvykti is a one-time treatment that has shown the potential to significantly extend survival for myeloma patients. It works by genetically modifying a patient’s T cells so they can recognize and attack myeloma cancer cells.
The treatment has been approved by Health Canada, but access still remains limited.
“Frustration is one word,” Lalonde said
“It’s right there, and it’s available, and it’s available in other countries, so right now the only way to get it is through clinical trials.
Dr. John Richardson was one of the myeloma patients lucky enough to receive it through a clinical trial.
“As a patient, I was very happy to get the Carvykti, knowing that it’s the best treatment available that I could get, not happy about having cancer, but if I do have this cancer, I know I have been treated the best possible way that is available right now.”
And despite cancer being unpredictable, he says he is feeling good and has the results to show for it.
“I know from my bloodwork that I am healthier, so some of the anemia I had is gone, the number of blood cells that are cancerous is really low,” Richardson said.
“In fact, they can’t find cancer cells right now. I am feeling more and more relieved as time goes on.”
Martine Elias, CEO of Myeloma Canada, says that negotiations are underway.
“It’s been recommended by the Canadian Agency for Drugs and Technologies in Health, and right now it’s been negotiated between the Pan-Canadian Pharmaceutical Alliance (PCPA) and the manufacturer for this drug to come to a resolution on the actual price.”
Negotiations between the two organizations began three years ago, ending without an agreement last year before restarting earlier this year.
In a statement to CityNews, the CEO of the PCPA, Mauro Chies, says that they have “committed significant time and resources to the negotiation for Carvykti.”
Johnson & Johnson, the manufacturer of Carvykti, states that the discussions are “confidential” but that they “remain committed to working with partners to deliver health innovation.”
“I know some patients who are going to the U.S. and paying out of pocket; they are being quoted $750,000 800,000 to receive this therapy,” said Elias.
“They are mortgaging their house to get access to this; that’s not fair. Canada should be able to provide this therapy to Canadians.”
For now, patients like Lalonde will rely on other measures to keep them going.
“At the end of my virtual meetings with the members of my support group, I point at them and say what is your job and they all scream back ‘to stick around’, we’re doing our job we are sticking around because we believe there will be a cure, so I guess I am asking the people at the table to do their job,” she said.
“My cheerleaders and my two girls, and my husband are my rock, he has been there every step of the way.”