Sorry for the delay in updating y'all. The last few days have been a whirlwind, and I'm not even sure where to start. From the clinical trial side of things, I have now finally spoken with Dr. Parsa at UCSF, and for his oncophage trial it sounds like I have a >50% chance of having enough tumor to produce vaccine. Yes, almost a coin flip. He also mentioned that if I were to go on the Toca-511 trial, I would likely eliminate any chances I might have in the future for a vaccine trial. This was the last nail in the Tocagen coffin. I am planning on speaking with Dr. Liau from UCLA tomorrow to find out a little bit more about their two vaccine trials, and soon after that I hope to make a decision. After all of this, I think I am still leaning towards the Cedars-Sinai trial, assuming that it does seem as effective as the UCLA trial. I'm likely not willing to take the "coin-flip" risk with the UCSF trial.
The rest of my time has primarily been spent trying to figure out how to pay for the trial. My "insurance" company, Kaiser Permanente, will not pay for the out-of-network surgery required by all of these trials. They would be happy to allow me into the trial if they could perform the surgery themselves. However, none of the trials can allow that due to FDA regulation. So here I sit in the middle of what clearly seems to me to be a financial clampdown of Kaiser. I submitted an appeal to their denial, and my appeal was...well...denied. I was offered, however, a personal 10 minute response to the deny-ers, live and in person. Today.
Now, according to them, I was denied coverage of this trial because "referral to the clinical trials [I] have requested is not medically indicated at this time because they lack efficacy in peer reviewed literature." And furthermore, "[My] treating neuro-oncologist...has offered to [me] treatment with a clinical trial with Tocagen or treatment with avastin/CCNU, which [I] have declined."
So, in 10 minutes I need to prove that (a) the trials I'm considering have strong evidence of efficacy (including peer reviewed literature), (b) the trials that are acceptable to Kaiser show far less efficacy than the vaccine trials, but require little financial contribution by Kaiser, thus indicating that their decisions are financial, not medical, and (c) the main thing that Kaiser is denying, the surgery required by the clinical trial, is, in and of itself, the most medically indicated treatment I could have given my current condition. Yes, that's a lot. My first step? Send out an e-mail to my family that says, "I need help!" Immediately they kicked into high gear, finding me several great peer reviewed articles and other information. I also touched base with the "Sue"-club, two friends who have a lot of experience dealing with Kaiser and with funding for clinical trials. And then I started to write. I wrote as much as I could for the rest of the day and into the evening. When I couldn't take anymore, I headed out for dinner.
On my way home I started to get pings from several different directions. The "Sue"-club and some people in the "Dorland hospital" have contact with several medical advocates, and those advocates laid out a concept for how to speak the truth to the deny-ers. Unfortunately, what I had already written would need to be completely reworked. I was overly exhausted and mentally spent. I decided I'd have to try to get that work done in the morning, mere hours before I needed to appear before the deny-ers.
This morning I woke up, turned on my computer, and saw that my (Google) document had been completely modified! Admittedly, my initial reaction was panic. My sister completely changed my document and didn't make a copy! And then I started to read. She had somehow reconfigured this document into the exact style described by the advocates. It literally brought tears to my eyes to see how wonderfully written and clearly stated it had become. It was as if I went to bed, and a bunch of elves came out and did all of my work for me. I presented this newly minted argument to the deny-ers as written, and even delivered it along with peer reviewed papers and a copy of the California law requiring insurance companies to cover clinical trial costs. While I'm still hesitant to think that they will reverse their decision, as a team, we could not have covered it any better. I will know within the next week.
So my thanks go out to the "Sue"-club, my freighbor, and of course my fabulous family. Both of my sisters deserve tremendous praise for the document I used to fight the good fight. As I said to a friend of mine who commented on their brilliance, merge a lawyer with an experienced Drama/English Literature professor and that's what you get...and I couldn't have asked for anything more.