Battle for Coverage

Hello everyone! It’s been another busy few weeks in our household. Steve has been working tirelessly trying to push down barriers just to talk to some of the powers that be. So the big topic of discussion that is going on right now is the coverage for one of the drugs that I am supposed to be taking. It’s a pretty complicated situation but I am going to do my best to explain it.  I apologize if it is a bit disjointed or hard to follow. I just finished a fresh chemo treatment on Friday and am still pretty beat down from it, however I felt it was important to get something out!  Please stay tuned as I hope to get another post up in the next few days.

I currently am fighting an aggressive form of breast cancer which means it likes to grow and it likes to grow fast. This meant that even though the doctors are treating the cancer, often times it can grow faster than the treatment can counteract it. Due to my age this “speed” is increased. Up until a few years ago this was some pretty scary news. Then this really neat drug was introduced called Herceptin. Herceptin is a drug that specifically attaches itself to the cancer cell to block it from growing. It has dramatically increased the survival rate of Her2 positive cancer patients. Herceptin is approved by the Canadian powers that be and I had my first treatment of it on Friday. The drug that is not covered is a close relative of Herceptin and does the exact same thing but on different receptors in the cell. In other words, herceptin “closes the front door” on cell growth and this new drug pertuzamab  “closes the back door”. Now this is where things get a little confusing.

The drug not covered is called Perjeta (generic name; Pertuzumab). During clinical trials, this drug has proven an increase in effectiveness when administered in conjunction with Herceptin as well as other drugs (which are covered and will be administered to me by the Sask Cancer Agency). Basically by including this drug, I have an 18% increased chance the cancer will completely disappear with chemo prior to the surgery. In short using this drug with Herceptin greatly increases my odds of kicking cancers ass!

Pertuzamab is approved in Canada for metastized cancers (cancer that has spread from its original source such as breast cancer that spreads to liver or bone) but not for non metastized cancers (cancer that is only in primary location such as breast cancer in the breast). The reason that it has not been approved yet is that the drug company has not requested approval for the use of this drug for stage 2 breast cancer in Canada. However they did apply for it in the United States and it has been readily available to stage 2 breast cancer patients in the US for almost a year.  Luckily I am able to take this medication as an “off label” use which means I can take it but the federal government, provincial government and the drug insurance company all claim it is not their responsibility to pay for this drug which foots Steve and I with the bill.

The Federal Government has been deflecting the blame on the Saskatchewan Government indicating each province is left to its own discretion in determining which drugs are and are not covered; this includes coverage for “off label drugs”. Additionally the Federal Government cannot approve a drug for which approval has not been applied for.  

The PAN Oncology Drug Review Committee is a national committee designed to review the efficacy of cancer drugs within Canada relative to several factors including drug costs. The Saskatchewan Ministry of Health has indicated since a PAN review has not been completed they’re unable to assess this drug and are therefore unable to provide financial coverage. Interestingly the same Provincial Health Care System has no issues providing us access to this drug which is not without its potential serious side effects as our Medical Oncologist believes the benefit to my health will far exceed any side effects.  Additionally, for a drug to be reviewed by the PAN Committee it must first be approved by Health Canada for this subset of use. Roche, the drug company who has successfully applied for this exact use in the United States has clammed up and won’t tell us why they haven’t applied to have this drug approved in Canada and we’ve been shunted to corporate relations who have not responded to our questions.

In short we are standing in a circle of involved parties who all have both index fingers pointing at someone else deflecting responsibility.

So we have been madly trying to fight to get this drug covered within the 3 weeks that we had notice that it would not be covered. Unfortunately we have not been successful. However Steve and I would like to ensure that we get the ball rolling for those that come behind me. To our knowledge I am one of, if not the first stage 2 breast cancer patients to be taking this drug in Saskatoon. And if I am going to blaze the trail I’m bringing a flame thrower.... lets open this path up to save lives!!! Because in my opinion it is ridiculous that this drug is sitting out there and people can’t take it. How many lives are being impacted by lack of access to this drug? Breast cancer is the 2^nd leading cause of death to Canadian women and 20-30% of breast cancer patients are Her2+ ... I’m no mathematician but that’s a lot of ladies! So it’s time to get the ball rolling. I’ not sure how we are going to achieve this but I’m German/Austrian, Scottish and Irish, that makes me a special kind of stubborn J which makes me specially equipped for this campaign. Rawr!

At this point Steve and I have exhausted all formal processes in getting this drug covered. The way things look now it will be impossible for me to have this drug covered given the current systemic barriers. However, we have now been in contact with the media to see if they can help get the ball rolling on large scale change to have this drug available to all Canadians who would benefit from it as this has now become our primary goal!

I think it’s important to state how overwhelming everyone’s generosity and support have been thus far! With your support almost half of the cost of my first treatment has already been covered! Thank you so much!

http://www.gofundme.com/AlyssaStrong