The high cost of staying alive
New and unproven drugs to fight ovarian cancer are not covered by medical plans
A Hamilton mom with ovarian cancer is paying $4,081.63 every two weeks for the lone drug that could prolong her life.
A Burlington retiree is shelling out $2,849.20 every three weeks for the only medication that might keep her ovarian cancer at bay.
The families of 38-year-old Tracy Lamont and 75-year-old Shirley Heys say they will do whatever it takes to keep them alive.
“I’ll sell the house or go bankrupt to keep her in medication,” says Don Heys,
Shirley’s husband of 58 years. “I’ll do whatever we’ve got to do.”
But both families question why drugs prescribed by area cancer specialists are not covered by the province, private insurance or any compassionate funds.
“We want to shine a light to show there are gaps in the system,” said Adam Lamont, brother of the mom of two young kids. “Despite the cost, we’ll find a way to pay for it, but it doesn’t feel like it should have to come to that.”
It’s not uncommon for patients to pay “astronomical” amounts for drugs because treatment options are limited for the fifth deadliest cancer in women, says Ovarian Cancer Canada.
“The challenge with the disease is that there are not a lot of available drugs and there haven’t been many new drugs approved for ovarian cancer,” said Kelly Grover, vicepresident of national programs and partners. “Patients are quite desperate for publicly funded available treatments that are new.”
The patient advocacy group is asking the federal government to fund $10 million in research as well as appealing to pharmaceutical companies to do the studies required
to have the drugs approved in Canada for ovarian cancer so they can be considered for funding.
“Not unlike other smaller diseases, the pharma company might not feel there is enough of a market in Canada so they might not bother trying to bring it here,” said Grover. “It’s very challenging for women and frustrating when they cannot get access to drugs. Who wouldn’t try to find resources to get the best treatment?”
The problem is that without strong evidence the drug works, there is no chance of the province funding it.
“There are times where people will try something even with a very slim hope or (doctors) might recommend something with a low likelihood of benefit,” said Dr. Peter Ellis, division head of medical oncology at Juravinski Hospital and Cancer Centre. “But the problem is … you can’t provide treatment that doesn’t have clearly established value because there is a limit on what the system can afford. Those decisions have to be based around therapies that have established value.”
Even when drugs are funded, there can be limits. Avastin, also known as bevacizumab, is covered for a maximum of 17 cycles when it is prescribed as a front line treatment. There is no way to get funding for more treatments no matter how the patient is faring.
“The decision on the maximum allowable treatment cycles is based on available clinical evidence and recommendations made by a review committee of oncology experts — called the pan-Canadian Oncology Drug Review or pCODR,” says the Ministry of Health in a statement.
The reasoning is cold comfort to Heys, who was told in the same appointment in October that it was critical she keep taking Avastin but that provincial funding had run out.
“The doctor told me how good I was doing and then the other one came in and said that the government wouldn’t pay for it anymore,” said Heyes. “He said there’s nothing he can do about it. He just blindsided me with that.”
To save money, she asked about taking the drug less often or switching to an OHIP-funded medication but was told there were no other options.
“The doctor said, ‘If you don’t take it your cancer will be back within two months because you have an aggressive form,’” said her husband. After her last CT scan, the doctor “was all smiles. He said, ‘This is working perfectly so we’ll keep it up.’”
Heys was a customer service representative and her husband is a retired distribution manager. But both of their private insurers refused to pay for the drug citing a lack of evidence of the benefits of its long-term use.
The drug maker, Roche Canada, gave the mother of three and grandmother of four a compassionate 20 per cent discount, but it still leaves the couple with a daunting bill of nearly $50,000 a year, which is more than their pensions.
So far, they have been charging the treatments to a line of credit.
“It just blows your mind,” said her husband. “We’ve being going through life so well, we’ve saved and we’ve worked hard.”
Now they’re preparing for the possibility of selling their house.
“This is only a house,” he says. “Her health comes first.”
The entire Lamont family is also willing to sell their homes if that is what it takes to pay for the last-hope medication for the mom of two children, aged four and seven.
“She’s an amazing mother and my backbone,” said her husband of 13 years Victor Di Pelino, who worked as a meat cutter before Lamont was diagnosed in July 2016. “She’s a happy-go-lucky person who loves life and her family.”
Lamont had exhausted all treatments and been admitted to a palliative care ward when a doctor at Juravinski Hospital and Cancer Centre suggested OPDIVO, which is approved and provincially funded for melanoma, lung cancer and kidney cancer.
The drug, also known as nivolumab, is an immunotherapy which means it tries to use the immune system to fight the disease. It is not approved for ovarian cancer so it is not funded by the province and not covered by Lamont’s private insurance from her job as a senior insurance underwriter.
The pharmaceutical company Bristol-Myers Squibb Canada is providing a compassionate 20 per cent discount. But the cost is still nearly $100,000 a year.
“They all say there is nothing they can do,” said her brother Adam.
The family can’t understand why there is absolutely nowhere to turn for help to pay for a drug that a leading oncologist says Lamont needs.
“When you say, ‘No,’ you are leaving a life in the balance,” Di Pelino said. “It’s, ‘Go fend for yourself.’”
The scramble to pay for the drugs comes at a time when the families say they can least afford it.
“I don’t have that real fight in me,” said Heys. “I’m trying to put all my energy into being healthy.”