• Avastin and hope

    One of my daughters once asked me about Avastin while we were standing in line (we’re a wonky family). I talked about progression-free survival for metastatic breast cancer, giving an overview similar to Dr. Tucker’s recent NYT Op-Ed. Then a person in front of us turned around, looking angry or hurt, saying they had a relative on Avastin. They wanted me to keep quiet. Talking about the clinical trial evidence was obviously painful to them. I apologized for talking too loudly and unintentionally hurting their feelings. People fighting for hope and recovery don’t want to hear a stranger talking about statistics. I understand that.

    Emotion runs high with Avastin. Take a look at a pro-Avastin fight song from YouTube (h/t to Pharmalot), supposedly produced without any Genentech money. I kept expecting it to morph into sarcasm (see The Onion), but it never did. Seems like a genuine person who really thinks the FDA wants to crush a good drug.  [see the comment from Terry below]

    Pharmalot was also the the first second to report* that the FDA won’t require Genentech’s experts to disclose their financial conflicts of interest when they testify at the upcoming hearing. Everyone’s financial conflicts of interest will be public and transparent, except the Genentech experts. Words. Fail. Me.

    Anecdotes have their place absent clinical data, but when we have good studies, they should be given appropriate weight. Patients (and their families) will always hope they are the exception, at the far end of the bell curve. As perhaps they should. But  hope alone (even hope based on unknown genetic variants) should not be sufficient to drive $90,000/year reimbursement decisions if the clinical evidence is clearly opposed.

    If we can’t get this right on Avastin, then I fear for our ability to bend the cost curve in IPAB.

    Previous TIE Avastin coverage here.

    UPDATE:  FiercePharma seems to have published a few minutes before Pharmalot.

    • Freedom of Access to Medicines (FAMEDS) is the nonprofit leading the fight against to FDA from disproving Avastin for use by these 17,500 women surviving on the drug with Metastatic Breast Cancer. Please sign and share the urgent petition: http://fameds.org/petition.php

    • Kevin, just as an FYI, the Avastin Fight Song was written by Andrew Katz of NYC. Andrew is a musician and aspiring actor. He is also a good friend of our family, son of Joe and Dianne Katz in Michigan. When I told him about my wife Arlene’s saga with Avastin, he said he would write a song and indeed he did. Right from the heart.

      I can also reiterate that he was not paid a dime for his activities and that Freedom of Access to Medicines is not funded by a penny of corporate money, whether from pharma, bio or any other source. http://www.fameds.org

      Please understand that there are some women who have been on Avastin successfully for over 6 years. For those doing well on Avastin it will be a crime should they be deprived of the one drug that works for them in their fight against an incurable disease.

      As for your daughter, she is to be commended for entering the debate, regardless of her views. Keep up the good parenting!

    • So…

      …if the clinical studies had shown that Avastin yielded pretty good results, then it follows (in today’s world, at least) that insurance companies would continue to cover treatments.


      …is there any middle ground for cases where the drug is actually shown to have a benefit after the same amount of time allotted in the study, then insurance would cover the treatment, but, if it doesn’t actually have any positive effect after that same time then it would no longer be covered?

      In some respects, this seems like what a good Doctor might do…. prescribe the drug if s/he felt it would bring benefit, and cease prescribing it once there was no benefit observed.

      The valuable CER data seems to offer Doctors some additional insight into the amount of time to wait to see if results are forthcoming.. Thats a great thing, isn’t it?

      Surely only hoping that a “good” drug will bring benefits also means that said patient has to incur the side effects of this “good” drug. And that could be fairly life threatening, as well.

      We are experiencing cancer here in our family, and are happy to be in a clinical trial even though we were randomized to the control arm of the trial (chemotherapy control vs. targeted immunotherapy).

      Keep up the great work on this blog.

    • I appreciate the thoughtful comments. Let’s listen carefully at the FDA hearing and see what the scientific presentations have to say. And I pray for grace for any family fighting cancer.