Saturday, December 14, 2013

The tide turns

    In January of 2012 faced with a rising P.S.A. and growing metastasis despite continued androgen deprivation therapy I approached my Oncologist at Kaiser Permanente about possible options in my treatment. He informed that there were three possible options available to me. He mentioned Taxotere, Zytiga, and Provenge. I had been following the Provenge saga since my diagnosis in 2006 and I was excited to be a potential candidate for the therapy. After the blood work was completed my case manager told me I was a perfect candidate for Provenge. Mandy and I were elated. We began to plan for the 7 weeks I would be required to miss work and to get all of our other ducks in a row. It was at this time that a C.T. scan was ordered. The scan revealed that I had a 1.5 cm metastasis in my left lung. My oncologist said that due to the lung metastasis I was no longer a Provenge candidate. We appealed the decision citing recent changes to he C.M.S. guidelines stating the only exclusion to Provenge use was Hepatic (liver) metastasis and we were once again placed on the list. A few weeks later in mid February I received a call from my Oncologist. He was calling to inform me that a new scientific study published in the Journal of the National Cancer Institute has proven that Provenge would not work for me. He told me that the evidence had shown I was too young and that Provenge might actually cause the cancer to advance expediatly. Mandy and I were crushed. Once again we were taken off the list. I began to post our frustrations on Healingwell.com. I received a lot of encouragement and a lot of good advice and also to my surprise I began to receive information from an unknown source that the scientific article that my doctor was citing might not pass the smell test. We began to look into things a little deeper and made the decision to fight Kaiser Permanente foregoing all other treatment in an endeavor to receive Provenge. We appealed the decision all the way to the Washington State Insurance Commissioner who ruled in our favor stating that Kaiser had made the decision not to treat on speculation and unproven scientific documentation..
   At this point I must digress. Our appeal process with Kaiser took roughly two months. During this time my Psa had risen from 22 to over 100. It was doubling ever 6 weeks and I began to feel sick again. We were afraid but we knew in our hearts that if we were to have any kind of longevity that I had to receive Provenge first. We began to formulate our backup plan. We would apply for patient assistance through the folks at Dendreon and we would go outside of our H.M.O. Network and see a doctor who would prescribe Provenge. We made an appointment to see an expert in the field of Prostate cancer research who was based in Las Vegas Nevada. The people at Dendreon were wonderful to work with and they helped us every step of the way. My healingwell family who had been following the saga online donated enough money to cover the cost of the trip and for the cost of the appointment. We began to feel confident that no matter what, Provenge therapy was going to happen. We purchased our plane tickets reserved a modest room in Las Vegas and made the appointment with Dr. V. Two days before departure my case manager at Kaiser called to inform me that the State of Washington had ruled in my favor. I was to receive my first Provenge treatment the first week of May, 2012. We had won. I cannot fully describe how we felt inside upon hearing this wonderful news. We cried tears of elation and relief. It was over. We went ahead and kept our appointment with Dr. V as part of the ruling recognized him as an expert in the field and Kaiser was ordered to follow any clinical advice from him verbatim. With the sweet tase of victory frown on our lips we headed to Vegas to meet one of the many people who had made it possible and to celebrate with a very good friend who also was a prostate cancer survivor.
    At the core of Kaisers decision not to provided treatment was the fore mentioned article authored by a Ms. Marie Huber. I had read the article( at least the parts I could understand) and found it ironic that the opinion of a stock analyst with a minor in bioscience could gain so much traction. There were many others within the scientific community that referred to the article as junk science and yet because of this woman's opinion I almost did not receive this potentially life saving treatment. Recently the S.E.C. Filed charges, fined, and suspended Ms. Huber for 6 months on grounds that she essentially used her influence to mislead the medical community while along she would lose massive amounts of money if the price of Dendreon stock did not go in the toilet. I do not claim to know the facts other than what I have read and that is very little to be honest but I know enough. It sickens me that the greed of a few could impact the lives of so many. I am so angry right now it isn't funny. How many men lacked the testicular fortitude to fight for the right to be treated with Provenge having been denied based on the same piece of crap article are no longer with us today. Provenge gave me 14 side effect free, progression free, months before we had to go to another treatment. In the humble opinion of this man she should face charges of unintentional man slaughter. 
   I have many friends within the Dendreon community who have been struggling to keep the ship afloat largely due to the same article that caused me so much anguish. I wish a pro bono attorney would file a law suit against the witch on behalf of me and so many others whose lives were affected by ms. Huber. I pray that Dendreon can right the ship and repair the damage that was done by her lies. Bottom line he treatment works and I will be here many more years because of it. This is just another example of how greed, big money, and Wall Street affect the lives of those of us on main street. Todd