The price of hope. The FDA says it’s too high.

I wrestled with this post because it’s Christmas and maybe not a time for this kind of topic.  But for many, it’s the price of their lives and their numbered days that should be talked about.

The FDA recently stopped the use of Avastin for the treatment of breast cancer.

By choking off the blood supply to a tumor and causing it to wither, it’s been effective in at least 50% of the patients who’ve used it and added months to their lives. Those months hold a glimmer of hope to the patients and their families that a cure might be found.

The cost of Avastin is $88,000 a year – not cheap by any means. But what is the price of the life of your mother or wife or sister or daughter? What is the price of hope?

I was on Temodar for 18 months. (As a side note, this drug is only given for up to 12 months but the doctors weren’t paying attention and I was on it for 6 months longer than recommended.)  It’s a chemo drug that is effective in about 75% of those who take it. It shrinks brain tumors like mine, except I was in the 25% group and it made no difference for me.

The price was $125/month because my insurance picked up the remaining tab- about $2200/month. You can do the math for a year on this drug.

The capsules came to me in the mail, once a month in a biohazard bag. 5 bottles with 3 pills in each one. I took 3 pills a day for 5 days a month. Like clockwork: about 5 hours after the first dose,, I started vomiting and did so for 2 straight days. I tried everything to prevent the nausea and vomiting: not eating before I took them, eating before I took them, eating dry popcorn or crackers, even tried smoking pot (which only made me feel more nauseous.) I took compazine and phenergan – with absolutely no results except I’d go to sleep for awhile just to wake up in time to reach the trash can beside my bed.

Doctor prescribed me a very expensive drug – Zofran. I remember going to the pharmacy to buy it and having the druggist tell me that it was going to cost me about $3000.

I started bawling right there in WalMart. What a scene I made of myself.

Throwing up 2 days a month was going to be my fate because we could not afford to pay for this drug.

So every month I got the medication, poured them out and stared at them for a while before I took them.  I’d tell myself that this is going to possibly save me – give me more time with my family – give me a chance at being a grandmother – afford me more time to right all the things and people I’d done wrong – buy me time for a cure to be found. I told myself it was worth it and it gave me hope. It gave my family hope, too.

Who are these 13 people on this FDA board to decide what is worth the risk and the  price and what is not?  The FDA claims that this is about risk but it’s not. It’s about the price of Avastin: $88,000/year.  This is the cap they are putting on hope. And why does anyone think they will stop at this drug and this price? When will it be Temodar or other chemo drugs that offer hope to patients and families enduring these types of life altering crisis?

They don’t care because with the new health care laws, we are only numbers and statistics.  Once our health information is put in a national data base (courtesy of Jeff Emmelt and GE) we are faceless, nameless case numbers. Our misery, our fears, our diseases, our hopes no longer exist.

Hope is not a factor to the FDA, the bureaucrats, the medical data entry personnel. Hope and a vision of the future is what makes humans different from all other creatures on this planet.  Take away our hope and what are we? What do we have left?

The answer: binary numbers in a computer data base.

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2 responses to “The price of hope. The FDA says it’s too high.

  • roxannadanna

    Same to you Steve and all those you love! I hope this is a blessed holiday for us all.
    Love to you and yours,
    Roxy

  • steve

    Hey Roxy;
    I just wanted to stop by to say I hope you and your family have a great Christmas and that the up-coming new year will be a safe and prosperous one for you.
    I can relate to your experience. I had to take Interferon (weekly injections) and Ribaviron (daily) for 10 months a few years back and talk about being sick … man o man! Anyway I was fortunate in the sense that I was part of a clinical study on the stuff and those particular medicines were free to me. The cost would have been something like $350.00 a week. Of course there were so many side effects that I was prescribed massive doses of Zoloft and Ambien, muscle relaxers, etc. for the entire time, which I had to pay for.
    You’re right though. Hope is not a factor … every bit of this new so-called health bill is about money and, in my personal opinion, population control will factor in there somewhere.
    Anyway, have a great holiday season.

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