06/07/2017 04:14 EDT | Updated 06/08/2017 11:12 EDT

The Metastatic Breast Cancer Community Must Be Heard

dolgachov via Getty Images
healthcare, people and medicine concept - close up of women in blank shirts with pink breast cancer awareness ribbon over white background

As the daughter of an Albertan living with metastatic breast cancer (MBC), I am greatly concerned about the long wait times to access new drugs & treatments. My Mom is now four years into her Stage 4 or MBC diagnosis, for which there are no cures. She is dependent upon certain medicines that help to not only extend life but provide a better quality of life. Research in the U.S indicates that only 22% of people diagnosed with metastatic breast cancer will live 5 years or longer.

As time ticks by, my Mom has been waiting over two years to access a promising new drug. She is only sixty years old, mother to three and grandmother to six. In Canada there are significant roadblocks regarding access to treatments which means that she, like so many others, could die while waiting for access to a drug that could give her substantially more time with her family.


Photo credit : Rachel Boekel Photography

We have repeatedly written, emailed, and even met with officials in our provincial government, including our Minister of Health, Sarah Hoffman. There has been little urgency and certainly no action taken to even begin to recognize this patient group and help them access the medications they so desperately need. Albertans with MBC and their loved ones are finding each other, finding their voice, and coming together to ask for recognition and access to treatments. We are growing weary of begging for help. That's not to say we will stop. We can't. We will just have to beg louder, more publicly, and hope to get some attention and compassion from those who could help, but choose not to.

A report from the Canadian Breast Cancer Network (CBCN), Waiting for Treatment: timely equitable access to drugs for metastatic breast cancer, reveals that on average, Canadian metastatic patients and their families are forced to endure delays of two to four years before they are able to access new treatments. These delays occur at nearly every stage of the approval process, but the greatest waits occur at the provincial level.

Rather than listing new drugs to the formulary in a timely fashion after federal approval, the province puts them under a secondary review process, lasting anywhere from months to a couple of years. We have asked the Alberta government to consider the model recently set by Ontario, where they have eliminated the need to re-review treatments provincially following the review by pCODR. This could potentially reduce wait times at the provincial level.

For example, still unavailable to Albertans is the promising new drug palbociclib. In 2013 palbociclib was given breakthrough status by the FDA. By the current rate of progress from breakthrough status in the USA to coverage in Alberta, it will be more than four years! How many MBC patients will have died during that time?

MBC is the little talked about, rarely understood, reality of the disease. While people are aware that 1 in 9 Canadian women will face a breast cancer diagnosis in her lifetime, many do not understand that approximately 30% of those women may go on to have their cancer recur as metastatic breast cancer.

Not to mention those who are diagnosed as metastatic from the start. This is not a small group of people with a rare disease. This is a large number of Canadians who need our government's help! Now, I am all too aware that there are many factors at play here. I also know that I want a government willing to fight for those who need their help, and who aren't content to deliver the status quo in health care.

For those living with MBC, timely access to diverse treatment options is critical. As cancer spreads, treatments that previously worked begin to lose effectiveness. As options become increasingly limited, the need for access to a wider variety of treatment options becomes more and more essential for a patient's survival.

We can do better for people with MBC. It is essential that our Alberta government commit to listing medications in the formulary within 1-3 months after the price has been negotiated, discontinuing the secondary review process to decrease the overall wait time, and finally give the metastatic breast cancer community the respect, compassion and care they deserve.

Follow HuffPost Canada Blogs on Facebook