MESSAGE FROM THE CHAIR
Annette Cyr, Chair and Founder of the Melanoma Network of Canada.
Patient and Three Time Melanoma Survivor.
Life-Saving Work in Action – How MNC Helps
It has been nearly 10 years since the Melanoma Network of Canada was launched. During this time we have seen significant changes in the melanoma treatment landscape – the majority of which have been very positive. Introduction of both targeted therapies and immunotherapies, as well as improvements in surgical procedures and radiation have served to provide hope, improved treatment options and for many, a chance for life and a quality of life that may not have been the case only a few short years ago. We are proud of our significant contribution to create more awareness of this disease and to influence approval of drug therapies and access across Canada.
As I have shared with you in prior newsletters, as a patient community, we are facing significant and dire obstacles in accessing timely treatment. This past January, I was contacted by a young couple (we will call them Tom and Donna for confidentiality) in Alberta that were struggling to afford treatment. Tom had been diagnosed with metastatic melanoma, had been put on a targeted therapy, which worked for a short time, and then the disease returned and spread quickly in the fall of 2017. His only hope was to try an immunotherapy combination. The issue was timely access. His private insurance company denied coverage. The combination therapy, while recommended for treatment in Canada, is still in a lengthy holding pattern while our provincial governments negotiate with the pharmaceutical company on pricing, making coverage through our provincial plans unavailable.
Working with the drug manufacturers access program, he was turned down for coverage two additional times. Tom and Donna decided they could not wait as his condition was rapidly deteriorating. They opted to pay for the drug on their own for as long as they could afford to. He started treatment in October and the best news was that the combination therapy was working by the end of December. The downside was the therapy was costing up to $14,000 a month, which was unsustainable for the couple. They reached out to MNC in January to see what we could do to help.
Immediately, we worked to gather background information and document the issues. We then began the task of reaching out to all stakeholders – the doctor, insurance company, employer, pharmaceutical company, access program coordinator, and even the couple’s local MLA. The last thing you should have to worry about when facing a life threatening disease is fighting with insurance companies, the government or other parties to get access to appropriate and potentially life-saving treatment that has been approved by Health Canada. I think it would be shocking to most Canadians to find out that you or your loved one could be in this type of situation. We assume that our health care system will be there for us when we need it. At present, Canada-wide, this is not a guarantee as our provincial governments and private insurers are not making timely treatment access for melanoma patients (as well as other cancers) a priority. Pharmaceutical companies also have a role in ensuring affordability of drugs and that when submitting for drug approval, that they do not have treatment protocols that are overly restrictive, excluding patients that have received prior treatments.
Fortunately, after nearly two months of almost daily effort, we are proud to say we received the following from Tom and Donna:
‘I received notice today that (our insurance company) will now cover my treatments starting in March 2018. Thank you so very much for all of your efforts to help us achieve this break. I know you spent many hours of lobbying on our behalf, calling and giving us direction and hope, communicating with (our doctor) and (the pharmaceutical company) and Bayshore and the (insurer), the access program, our MLA for discussions just to mention the ones I am aware of. Words cannot express how this will positively impact our lives. I want to contribute to your organization in the near future once this all comes to reality. Thank you, Thank you, and Thank you for all you have done for us.’
MNC was also able to influence the Ontario Provincial Government to take advantage of a program offering significant subsidy of one of our combination therapies, that most other provinces had enrolled in. This allows patients to gain early access to combination therapy until the end of 2018, while pricing negotiations are underway. The only province that has not signed up is Quebec, which we hope will come on board soon. Needless to say, we are proud of our efforts to support our patient community and to strive to have the best possible treatments for patients Canada-wide.
In 2018, we have an opportunity to influence change. There are three major provincial elections happening – Ontario, Quebec and New Brunswick. You can get involved by reaching out to us for more information on Making Melanoma a Priority and letting your local provincial candidates aware of our issues.
acyr@melanomanetwork.ca
