This is a concept map of my life since I was diagnosed with
high-risk leukemia a few years ago. Each cancer patient faces emotional,
physical, and financial tolls, as well as trying to cognitively put their hands
around what is happening to their body and what can be done. In my case, there were no real
successful options, until I entered a clinical study.
I now have a cognitive understanding of the cancer. I am
dealing with the physical and emotional toll. I believe the financial toll is
manageable for now. After 2 1/2 years of weekly depreciating insurance
interviews and filling out questionnaires and providing evidence of disease, I
thought I could get on with my life. But now I have been randomly selected
(LUCKY ME) to participate in another detailed insurance questionnaire about my
medical condition. Here we go again...
And now I find out that the drug that is working for me will
probably cost $150,000 per year... I am so happy I have a demented sense of
humor!
-- Dr. La Verne
I am so saddened by the reality of such a rich & powerful nation which subjects its own people to what must be a dreadfully painful insurance process in order for them to survive serious illness.
ReplyDeleteAmen.
DeleteMe too John .. I think it's a case of being hoisted up by our own petard .. that is, the "thing" that makes us great (according to some) is our "capitalism" and it is that need for ever increasing profits that will blow up in our face, or at least in the face of those of us with CLL who are not billionaires.
ReplyDeleteFor me, what has made us great is we had a huge frontier rich with resources to expand into, with motivated immigrants as engines of the expansion. It was luck but we call it "exceptionalism". Now .. not so much, so we are seeing the endgame (think Monopoly endgame) where the guy with the most houses goes on to build hotels while the guy without .. well, he owns less and less and finally turns in his token, sigh.
But La Verne .. I've been thinking about you who are still in the trial. I assume that even when Ibrutinib is approved, that one of the dues to those who took their risks as lab rats, is a life time supply of the drug. I would fight for that if I were you and I might even join as I had nine months on the trial and certainly took my risks as well.
All the best,
Lynn
There is strength in the ibrutinib lab rat gang. :-) You, Lynn, are also part of the gang. Let's see what happens and then prepare ourselves for the fight of our lives...
DeleteLike the old saying "He who dies with the most toys wins" eh Lynn :) Still, then you have great young people like La Verne's son and his two friends (and my grandson) who go out of their way to help those of us suffering from leukaemia. Then we have great people like the two of you who take part in trials that benefit all of us with leukaemia and many other associated cancers. You are true heroes for the cause :)
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