Kent Pankow Trust Fund

April Update:
Kent's MRI Analysis
We received the results of Kent's April 14th MRI late Monday afternoon, and the news was not great. Kent's tumour is progressing, so his doctor at the Cross told him to stop taking his daily Etoposide chemo and the bi-weekly Avastin infusions. She suggested he start a new chemo called Tamoxifen, and she is also requesting that Kent be assessed for potential surgery. For the time being, Kent will not take any chemo's so he can remain eligible for clinical trials (they won't accept you if you are trying another strategy).

I took Tuesday off from work to pull together our "Plan B" for Kent. My dad gave me all the research he had been collecting and my friend Jacqui spent the day pouring through 272 clinical trial listings to find trials for recurrent GBM brain tumour patients. I contacted the Mayo Clinic in Rochester, MN to go over Kent's new treatment and request that his Mayo doctors review his MRI and radiology report and give us their recommendations. The nurses advise that they are currently taking patients in the measles vaccine clinical trial, and that is something Kent is very interested in at this point. This is where a genetically engineered measles virus is injected into the brain after surgery. The virus attacks cancer cells, but not healthy tissue cells.

We realize that surgery, alone, will not be the silver bullet. And it is unlikely that chemo, alone, will do the trick at this point. But we're not doctors, so we have to wait and see what the Mayo doctors say, after they review Kent's MRI and radiology report. I couriered the MRI to the Mayo clinic Tuesday morning, and we should hear back from the Mayo by the end of next week/April 30th. We are also investigating vaccine programs at other institutions in Canada and the US, in the event Kent is not a candidate for the Mayo measles trial.

There is some irony here, in that Monday morning we received news from Hoffman La-Roche Limited that the appeal to Kent's drug insurance company was successful and his insurance plan would now cover 80% of his Avastin treatment and Roche would cover the remaining 20%, starting this week if the Avastin was administered in a private clinic. Although Kent will not benefit from the results of the appeal as he will not be taking Avastin at this time, other GBM brain tumour patients will benefit. This is all because Health Canada approved Avastin as a GBM brain tumour treatment. However, some drug insurance companies may still not approve the coverage of Avastin, and that is why it is still critical that Alberta Health and Wellness add Avastin to the Alberta Drug Approval List for GBM patients. At any rate, the insurance coverage news is heartening and we are thrilled that all the folks associated to Team Kent played a role in this development. It will mean a lot to a lot of people...
Kent and I are taking his MRI news in stride. We have been down this road before and we are accustomed to throwing our plans out the window to triage the situation. We are hopeful that Kent's Mayo doctors will recommend a promising treatment, and that we will be able to execute the plan as soon as possible. In the meantime, we are sticking to our routines as much as possible, in order to maintain a sense of normalcy in our lives.
Responses from Alberta Health Minister

In my last email update, I noted that it appeared that folks who sent emails/letters to Alberta Health Minister, Gene Zwozdesky, did not receive replies.

Two extended family members emailed me to advise that they had received responses from Minister Zwozdesky before Health Canada approved Avastin for GBM brain tumours. The response letters indicated that Alberta Health and Wellness would not address Kent’s situation until Health Canada approved Avastin for GBM brain tumours.

One of the family members emailed Minister Zwozdesky again, after Health Canada approved Avastin as a brain tumour treatment, and she has not yet received a response. Minister Zwozdesky has advised that he is not in a position to discuss Kent's case because the matter is before the Alberta Human Rights Commission.

Richard Marz and Minister Zwozdesky in Question period, April 12, 2010

Richard Marz, MLA for Olds-Didsbury-Three Hills, asked Minister Zwozdesky about the approval of Avastin as a GBM brain tumour treatment in Alberta, during Question Period on April 12, 2010, as follows:

Avastin Treatment for Cancer

Mr. Marz: Well, thank you, Mr. Speaker.

Several Albertans suffer from very serious cases of brain cancer, and most of them are nearly desperate for help. One of my constituents feels that based on what he has read and researched, Avastin could be a very effective treatment for his particular case of brain cancer. My questions today are to the Minister of Health and Wellness. Why won’t this minister fund this drug, Avastin, as part of an approved treatment for brain cancer?

Mr. Zwozdesky: Mr. Speaker, there are processes and protocols that every province has that it follows. This is all part of a larger national network. To my knowledge no other province, no other territory is yet able to fund Avastin for purposes of brain cancer treatment, otherwise known as glioblastoma. As soon as that process is completed, then we’ll consider it here.

The Speaker: The hon. member.

Mr. Marz: Thank you, Mr. Speaker. To the same minister: what is holding up the process for ultimate approval of Avastin for brain cancer patients?

Mr. Zwozdesky: Mr. Speaker, these are very complex and difficult decisions, obviously. The very first step in the process is for Health Canada to review any particular drug that has been suggested for purposes of safety of use and effectiveness of use. They have just completed that first step. Now it’s gone over to the joint oncology drug review committee. That’s another process. They look at some of the similar stuff, but they also look at the cost-effectiveness of it. As soon as that step is completed, we then get a recommendation to Alberta Health and Wellness.

Mr. Marz: To the same minister again, Mr. Speaker: given that many Albertans are under the impression that Health Canada has already given approval based on recent announcements this past couple of weeks, how long will it take for Alberta to eventually fund this?

Mr. Zwozdesky: Mr. Speaker, I’m actually grateful to the hon. member for phrasing the question in that very sensitive way. In fact, only the first stage of about a three- or four-step process has now passed with approval at the Health Canada end. It will still take a few months for the joint oncology drug review committee to do its work in this regard, and after that it will take a few months for our local Alberta provincial drug committee to do its work in reviewing, and ultimately within a few months after that we should be in a position to say yes or no.

We would like to extend our sincere gratitude to Richard Marz for asking Minister Zwozdesky about Avastin in the Alberta Legislature Question Period. This information is important to Kent and other brain tumour patients who are struggling to understand:

* why other cancer patients receive Avastin at no cost, while brain cancer patients are excluded from receiving this life-sustaining treatment, and;

* how they are going to fundraise over $9,000 a month while governments undertake a lengthy cost analysis process to determine if brain tumour patients are worthy of saving - like colon, breast and lung cancer patients are.

Update from Brian Mason, April 19, 2010

Hi Deb and Kent,

We just wanted to give you a little update as to what has transpired on our end.

Brian sat down for a meeting with Minister Zwozdesky this morning to discuss your matter.

The Minister indicated that the Joint Oncology Drug Review is underway, and it could take up to 6 months. However, he did say that he would call Ottawa to see about the possibility of expediting the process. He also indicated that once it landed back in the province’s hands, he would have some power to move the approval process to have the drug covered. He seemed to be on board with attempting to expedite the entire process as he also sees and understands the inequity in terms of coverage for some cancers and not GBM.

At the moment, his hands are somewhat tied because it is in the hands of the Feds but he doesn’t seem opposed to helping move it forward or at least making some calls to try to find some more concrete answers. He also indicated that he is certain that there are other Health Ministers in other provinces that would be interested in the same outcome.

We will continue to work closely with the Minister on this for you as I know Brian is looking to see some movement on this as soon as possible. Please don’t hesitate to contact us anytime.

Best,

Tyler Bedford

Constituency Manager

We extend are sincere appreciation to Brian Mason for meeting with Minister Zwozdesky on two occasions, over the past few weeks, to try and address Kent's situation. Thanks also to Tyler Bedford for keeping us informed of the developments. We really appreciate it and we know other GBM brain tumour patients in Alberta will benefit from their efforts.

Thanking the Government Officials Who Have Been Advocating for Kent

To our knowledge, the following government officials have been advocating, on behalf of Kent, for the approval of Avastin as a brain tumour treatment in Alberta and/or Canada.