Kent Pankow Trust Fund

March Update:

Avastin Update
We had a rough week on this front. Kent's neuro-oncologist (NO) phoned him last Thursday to say that she thought he should take a break from his Avastin treatment because she realized she only had authorization to give him 8 treatments and the treatments had occurred. She also said she had some reservations about him continuing with the drug because there are potential side effects (which Kent is not experiencing) and the drug has not yet been proven to be an effective treatment in Canada. She informed Kent that his next Avastin treatment, scheduled for March 10, 2010 was cancelled.

Kent told her that he wanted to continue taking Avastin because it is playing a key role in stabilizing his tumour. We also received a letter from Kent's surgeon at the Mayo Clinic on Thursday, and he had reviewed Kent's MRI's and radiology reports, and he advised in the letter that the tumour was stable and he recommended that Kent continue with his current treatment strategy (Avastin and Etoposide). Kent's neuro-oncologist said that she could apply for Director's Privileges to prescribe and administer Avastin to Kent again, but she didn't think her application would be successful because the drug is not yet approved in Canada.

We called a doctor at the Tom Baker Centre in Calgary to consult with Kent's neuro-oncologist and the NO called back on Tuesday afternoon to say that she had submitted an application for Kent to continue with his Avastin treatment until the tumour goes into remission or Kent's body rejects the drug. She also said that her application must go through an approval process, she doesn't expect any problems with the application, and she can't reschedule his Avastin appointment until she receives approval. We are expecting her to call any day with an update. If Kent's Avastin appointment doesn't get rescheduled for March 10th, Deb and her parents, Jack and Paula, will take Kent to Montana and ask the Mayo doctors to fax the prescription there so Kent can get his treatment, since Avastin is a standard treatment in the USA. Never a dull day at our house...

Human Rights Complaint Update
As reported in our last update, we received a letter from the Alberta Human Rights Commission dated February 18, 2010 indicating that they have received our complaint, our documents are being assessed, and they will contact us shortly. We have nothing new to report on this front.

Call to Action - Please Write Letters to the Editor
Friends and family have sent close to 200 letters to various provincial and federal government officials. These letters are sitting in offices across the country - most of them unanswered. As a result, we would like to switch our focus to the public arena and ask people to write letters to the editors of their local newspapers - particularly in response to media coverage of Kent's story. In this way, we can build on the momentum of the media coverage, ensure that the public becomes aware of Kent's situation, and encourage discussion about this problem at the community level.

We have some new media coverage coming out this week, and we will be approaching the media to cover Kent's story more over the weeks to come.

It would be great if people wrote the letters in their own words and asked Hon. Gene Zwozdesky and Dr. Stephen Duckett to waive Avastin fees for Kent and other brain tumour patients who would benefit from taking the drug. You do not have to write a long diatribe - it can be short and sweet - and you don't have to use any of the points I have listed below. I have just included them as a reference for you. Be as creative as you want...

Key Points for Your Reference

The provincial government has the responsibility of establishing fees for drugs administered in Alberta - not the federal government. (See page 2 of attached letter from Health Canada. You have to click on the link to see page 2).
Hon. Gene Zwozdesky, Minister of Alberta Health and Wellness, has publicly stated that his hands are tied and that he cannot authorize Alberta Health Services to waive Kent’s Avastin fees until Health Canada approves the drug. This is not true. He has the authority - and Dr. Stephen Duckett, President and CEO of Alberta Health Services, also has the authority.
Alberta Health and Wellness did not require Health Canada’s approval to prescribe or administer Avastin to Kent in the first place, so why would it need Health Canada’s approval to waive the fee for Kent and other brain tumour patients? This is an excuse to not take responsibility for addressing the problem.
The Alberta health system has prescribed Avastin to brain tumour patients, and this is an example of their endorsement of the drug as a legitimate brain tumour treatment.
The medical profession believes that Avastin is beneficial for some brain tumour patients. That is why the FDA in the USA approved Avastin as a brain tumour treatment in May of 2009, and that is why some doctors in Alberta/Canada prescribe it to brain tumour patients.
Minister Zwozdesky and Dr. Duckett both have the power to waive Kent’s Avastin fees – so why are they choosing not to help Kent and other brain tumour patients taking Avastin?
Why is it that a grade 2 class of 7-year-old kids in Olds, Alberta is taking more leadership and responsibility for Kent’s health care than the ministry of Alberta Health and Wellness? (Caleb’s Penny Drive)
Zwozdesky and Duckett are hiding behind a Government of Alberta “policy” that, if it exists, is archaic and inhumane. It is simply cruel to tell a brain tumour patient that the medical system has access to a drug that will help shrink his tumour and keep him alive – but it will cost him over $9,000 a month.
It is also pure discrimination to charge one type of cancer patient an exorbitant fee for the exact same drug other cancer patients receive free of charge. The Alberta Human Rights Commission clearly outlines guidelines for discrimination against someone based on an illness or disability. http://www.albertahumanrights.ab.ca/complaintform-guide.pdf (pages 5 and 6)
Our current government officials were elected because they appeared to have a thorough understanding of the issues that are important to Albertans, and the skill-set to anticipate and solve problems when they arise.
Alberta Health and Wellness is supposed to prevent situations like this from happening – that is why we have universal health care for all Albertans – including brain tumour patients.
Where is the leadership from Zwozdesky and Duckett on this issue? Zwozdesky phoned Deb after Kent’s story aired in the media on February 13, 2010, and he promised to follow up. We haven’t heard back from his office. Perhaps it is because he advised Deb that he could no longer talk to her and Kent, or comment on this case because Deb told him at the end of the conversation that she had submitted a complaint against Alberta Health and Wellness with the Alberta Human Rights Commission.
The Director of Patient Concerns with Alberta Health Services has known about our situation and our concerns since October of 2009. The Director advised Deb that she had formally forwarded the information to Tony Fields, the VP of Cancer Care, in January 2010. It is now March, and we have not received any follow up from Duckett’s team at Alberta Health Services.
The human rights complaint does not negate Zwozdesky and his ministry, or Duckett and Alberta Health Services, from addressing this problem.
Clearly this is a critical issue which could impact all brain tumour patients and their families in Alberta.
At a time when they are most vulnerable, brain tumour patients and their families are stripped of their dignity when they have to place their private health issues on public display and fundraise in order to obtain life-saving medication.
We demand leadership from Minister Zwozdesky and Dr. Duckett on resolving this issues. We demand their accountability. And we demand their integrity. Shame on them all…