8 September 2008
Monday, 10:25 PM
High-Level Journal Summary: Looking at how to control costs if I were to have Avastin from my local oncologist rather than in clinical trial at NIH. In clinical trial, everything is paid for through tax dollars. With my local oncologist involved, all costs are upon to me, even when this leads to catastrophic financial situations.
Following a formal process at Genentech (makers of Avastin), there is a formal application process which we are following. I qualify for this payment process. Since Medicare will not pay for a drug which is not approved by FDA, then I qualify for payment of this drug by Genentech. It could be a lengthy process, but it would make a dramatic difference in the overall fight -- a big part of which is financial.
Countdowns:
1.) On 9/9/08, check my blood levels again and meet with my hematologist/local oncologist, Dr. Dipti Patel. The purpose is to check where the White Blood Cell (WBC) count is right now. Yesterday, it was at 2.6 K/uL instead of the 3.0 K/uL needed in order to be in the Avastin + Enzastaurin Clinical Trial at the National Institutes of Health (NIH).
2.) On 9/9/08, meet with a new lawyer to fix things in my Trust that need to be worded correctly. Even after $14,000 of investments so far, more work is found which needs to be added.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 11 days ago.
2.) In 2008, I have had 79 SPS's in 252 days. This is an average of 1 SPS every 3.2 days.
Actual Journal: I learned more about how things work with the payment of Avastin out of my own pocket, just in case I do not get in the Avastin + Enzastaurin Clinical Trial at NIH.
Maker of Avastin helping with costs
Here is the way it formally works:
1.) I do not qualify for the Avastin + Enzastaurin Clinical Trial at NIH.
2.) Medicare confirms with Genentech (maker of Avastin) that they will not cover this cost. Dr. Patel's office makes this claim.
3.) Upon confirmation of this knowledge, Genentech will then move forward in supporting me for these costs.
4.) Should there will be a delay in timing, we should still be okay. That is, back payments should be made without any problem.
5.) More things need to be confirmed, and that can be done on 9/9/08 when meeting with Dr. Patel, who has extensive experience with Genentech.
Formal route en route
It sounds as if this is a legitimate way to deal with the extreme costs of Avastin. It is 100% approved and available to anyone whose insurance will not cover the initial cost of dealing with a drug such as this. That is, Medicare will not touch the cost of Avastin, simply because it is not yet FDA (Food & Drug Administration) approved.
Since I am in this state, I am immediately in a class of people who are in a financially catastrophic stage. Genentech does not want such people to exist. This is why this outreach program was created, so people can get this drug instead of being financially held back from the opportunity because of costs.
Wow. Pretty amazing, I must say. I would love to start this treatment without the financial cost of these drugs on my shoulders. I would still have to pay the costs of dealing with services from Dr. Patel's office, but that cost will be in the thousands instead of in the tens of thousands. I can afford services, but I cannot afford services and drugs, to be sure.
Escalation?
If we need to escalate, then we shall do so. This is not an area I want to hit, but I remember when we had to do this in 2006 to pay for my 5/5/05 brain tumor surgery.
We worked hard against my insurance provider at that time, and we eventually were able to prove our case. However, it took so many months to get to the final meeting with the correct people who could make the correct final decisions. That is nothing I want to go through again. Ever.
