They were both still in their early 40s, a loving couple with two young kids in school. The husband had become seriously ill and, at first, they didn’t know why or what it was about. But then the wife, aged 41, learned that her husband was likely to die within two years, because he was suffering from a rare and dangerously elusive disease called multiple myeloma.
In response, this working wife, who doesn’t seek acknowledgement nor being identified in this account, moved into action and did what she believed was most necessary. She knew instinctively and immediately that she’d have to find the right person with the authority to provide potential aid for her husband and all ongoing, and future, sufferers of this fatal disease.
Multiple myeloma, a rare form of bone cancer that can affect many organs, requires a very specific, and expensive medication to extend lives, or else its sufferers would be faced with a no-hope situation and die quickly.
The determined wife met with a successful entrepreneurial acquaintance who also had the disease and had already personally created the first Multiple Myeloma Research Chair in Canada. Recalling that man’s determination — “He wouldn’t take ‘No’ for an answer — to promote the need for more financial help for people trying to combat the disease,” she said.
Make no mistake: She wouldn’t take “No” either. Her true and enduring aim was to put all her energy into the cause, and somehow provide essential coverage to all multiple myeloma patients, regardless of their financial situation.
According to Canadian cancer statistics, it’s estimated that this year alone, more than 4,000 Canadians will be diagnosed with multiple myeloma, with a total of 1,750 dying from the disease.
That’s when she made her way to visit Helen Stevenson who worked in the Ministry of Health and was also the former Assistant Deputy Minister and Executive Officer of Ontario Public Drug Programs from June 2007 to July 2010. At that time, Stevenson was responsible for the Ontario government’s $4 billion publicly funded drug programs.
When I interviewed the woman about her determined cause to extend more help and years to multiple myeloma patients like her husband, and its inevitably sad outcome for many others, she said, “Helen Stevenson heard our pleas to help grant access to, and funding for, Revlimid, a major state-of-the-art multiple myeloma treatment.”
Revlimid is expensive, in Canada costing about $8,000 for 28 capsules, but it can extend life for several years. The woman’s own husband eventually died of the disease, but he’d lived an extra 11 years because of the fund- and the Ontario government’s added support.
Multiple myeloma develops in patients when there’s a buildup of abnormal plasma cells in the bone marrow, making it hard for other blood cells to develop and work normally and can cause anemia and fatigue. This can lead to tumours in bones which can spread to other parts of the body.
There’s no question among those brave, determined people who recognized the need for government support early on, as to whether it was the determination of the many spouses and countless other relatives, whose partners would’ve surely suffered their illness far more acutely, and who still likely faced somewhat earlier deaths.
Including all the other patients and spouses who needed financial support to sustain longer years, more than $10 million was reached by June of this year, to battle the disease.
There’s still deep pain, of course, to every story of losing a life partner and the normal expectation of having many years together. And there’s doubtless far deeper pain which sometimes takes years and therapy to overcome, for the children needing to accept such a harsh and frightening loss.
To my view of her bold campaign, the determined wife and loving partner who took personal action to urge the Ontario government’s Health Ministry to save the desperate sufferers who couldn’t afford extra costs for Revlimid, was truly heroic. Both women involved in the cause, brought fairness and true empathy to the province’s desperately ill citizens.
Any added years of patients facing death without further lack of medical help, was a gift not only for those who were ill, but also for their children who needed their parents longer, plus other sufferers of the illness and, hopefully, a reinforced health support system for everyone involved now and in the future.
“The pain we feel as grieving people, is equal to the amount of love we give! Grief is not linear and thus there is NO time limit on it … it takes time, patience and love,” she says.
Ellie Tesher is an advice columnist based in Toronto.
