Expressing Anger through Writing - Letters to the Editor

Lately I have been writing to express my opinions in some local papers. On Friday I came across an interesting article in the National Post about the federal agency PCODR which reviews new cancer medications and makes recommendations around provincial funding. I felt compelled to write a letter to the editor - who knows if they will publish it. Here it is in case they don't...

Re: National Post Article: Cancer panel’s call: is a drug worth it? November 22, 2013

How can you put a price on Hope and Survival? 

I became familiar with the PCODR in early May, 2013. My HER-2 breast cancer had returned with a vengeance and had metastasized to my liver. Perjeta, a new HER-2 treatment,  was available and proven to extend survival by more than 6 months. This brought hope for a wife, mom of 2 young children and OT. I was the first in Canada to have private insurance funding. One month later my contract changed and Perjeta was no longer covered.  It cost $3600 every 3 weeks and was being reviewed by PCODR. It was not provincially funded - not even under the compassionate access program at the BC Cancer Agency (BCCA). It has been a full time job of fundraising and advocacy.  Perjeta is now funded in BC and Ontario 7 months after approval by Health Canada. I am sure women died while waiting as they could not afford it. 

I am outraged by the delay between a drug’s availability and provincial funding. In the time PCODR and the provinces take to decide to fund these promising new drugs, many people will die. The new targeted therapies are promising to turn stage 4, metastatic cancer into a manageable chronic disease rather than a death sentence. I feel it’s unethical to withhold that from Canadians. Having a delay in which only the wealthy, or resourceful can afford treatment is contrary to universal health care. Metastatic cancer survivors need many options available as soon as possible to have a chance.  How can we put a price on hope and survival? 

There must be funding accessible to all during this review period.  Perhaps Health Canada, Big Pharma, PCODR,  and the provinces could work together more efficiently to get a drug passed and funded simultaneously. 

During Pinktober I sent the following to some of the local and more distant papers.....I know my local papers published it despite it's length.

I bought myself a coffee the other day and the cup was bright pink. I turned on the TV and saw the football players sporting all their pink . I was invited to attend an exercise to raise money for breast cancer class. Breast cancer awareness month AKA “Pinktober”  is upon us. It’s a tough time for me. Especially because I am part of the group that has to undergo treatment for the rest of my life and chances are, cancer will take my life eventually. Focus on metastatic breast cancer is sorely lacking in this overwhelmingly pink month.

Metastatic cancer refers to cancer that spreads to different parts of the body - often the bones, liver, lungs and brain. It’s also known as Stage 4 Cancer. The one you DON’T want. Traditionally 5 year survival rates were less than 20%. (From: Metastatic Breast Cancer in Canada: The lived experience of patients and caregivers (2013)CBCN )When you are part of that club it’s pretty difficult to be happy about all that pink. 

Don’t get me wrong, pink rocks and the breast cancer community is extremely lucky that there has been such a push to raise awareness and funds for early detection and treatment of the more common breast cancers.  I myself have been saved by amazing HER-2 breast cancer research a couple of times now.  Newer studies are even looking into causes, environmental factors and the impact of cancer on everyday life. Check out the Health of Women study https://www.healthofwomenstudy.org.   What is sad is that the billions of dollars in money that has been raised for awareness and research to date has not impacted on the sober reality that 30% of people who have had breast cancer stage 0-3 will go on to develop metastatic cancer over their lifetime. (From: Metastatic Breast Cancer in Canada: The lived experience of patients and caregivers (2013))  This takes my breath away and I hope it does yours too. Breast cancer is still killing far too many women despite all of the early detection and treatment available. Lets hope that the newer studies find a better relationship to the causes and that we can modify those with healthy living. I truly believe that a cure lies in believing that modern medicine and the natural world can work together.

I have made several very close friends over the last 2 years. Most with metastatic disease. I poured over the trials websites and alternative treatments to try to find hope and options for them. What I discovered is that we are on the edge of an avalanche of new treatment options for all kinds of cancer but especially metastatic cancer. They are focused more on stopping and killing the cancer cells and less on obliterating everything good and bad in the body like traditional chemo. It’s called targeted therapy. In my cancer alone - metastatic HER-2 - there are 3 new medications available - Perjeta, Kadcyla and Affinitor. Great news for a metastatic survivor who needs a few good options in a timely manor.

There is a really big problem. There is a significant delay between the availability of medications and funding. Just because pharmacies can stock Perjeta, Kadcyla and Affinitor doesn't mean anyone will pay for it.  And the costs of these drugs are  prohibitive.

First a federal review board - the pan Canadian Oncology Drug Review (pCODR) - looks at each drug to determine if it effective and is something the provinces should offer. They also make recommendation about affordability. The process is available for review by the general public.  www.pcodr.ca  

Then the province looks over the drug through the BC Cancer Agency (BCCA) Priorities and Evaluation Committee (PEC).   They determine if they are going to fund it and negotiate the price with the drug company. They do not post their process for the general public to follow. All the while the STAGE 4 cancer patient waits. But doesn’t have TIME to wait with crappy survival statistics on his/her side. And likely doesn’t have the time or energy to advocate.  

When I recently lost my extended insurance coverage for Perjeta I was given the impression that it would take 1-2 years before the provinces would start covering it. I started a self advocacy letter writing process. So far I’ve been turned down by my insurance coverage because of the employer/union contract; the BCCA; the compassionate access program (CAP at BCCA) ; and pharmacare under special authority.  I have begged to for my coverage to be grandfathered to no avail.  I’ve been told that Perjeta is a priority for consideration by BCCA but is not currently funded. pCODR recommended the drug company reduce their price so I wait for negotiations. 

With tremendous gratitude to the community of Whistler I was able to raise almost $40 000 for my own treatment. Now I can relax a bit, heal and continue to advocate.

But what about everyone else that needs a new or emerging targeted therapy. They will have to wait or find the money to fund it until the provinces do. The new treatments cost thousands and thousands a month. So it’s not universally accessible to all Canadians And that’s just wrong.

So with all the pink around you likely haven’t heard this dark side of breast cancer treatment. I only hope you can take a moment to be “aware” that metastatic cancer is a big issue. IT deserve awareness and funding just like early detection. Mets people need multiple options in a timely and affordable manner to survive.  Just maybe that can happen with a bit more awareness. 

Metastatic Breast Cancer Awareness day was first suggested for October 13, 2009 in Ontario on Parliament Hill.  There is still a long way to go until all of Canada acknowledges this very important addition to Pinktober.