Responding to Dr. Besser from GMA

NOTE: We were scheduled to be on Al Jazeera’s The Stream Tuesday, but they just cancelled on us. I’m guessing that it has something to do with them not being able to find a medical ethicist willing to serve as the opposing viewpoint on Live TV.

Since we aren’t going to have the opportunity to finally debunk the arguments “medical ethicists” have been allowed to make without our response at the end of several of our TV segments, I want to briefly touch on the Good Morning America piece — you can watch it here if you missed it.

Dr. Besser

Dr. Besser

I appreciated the coverage and enjoyed the piece up until the final seconds. The segment closes with the following statement from Dr. Richard Besser, ABC News’ chief health and medical editor:

“You’d like that [Mikaela’s access to anti-PD-1 immunotherapy] to be a decision that’s made by people that are caring for her, not by the pressure put on by a social media campaign.”

Mikaela & I are committed to keeping this campaign positive, but we feel we must respond directly to this statement. This is simply poor journalism and absolute ignorance on the part of Dr. Besser; in this piece about medicine, he completely dropped the ball.

1) Dr. Besser’s underlying implication is that Mikaela and I are doing this in spite of doctor’s counsel. This implication is baseless and false: not only were we never asked by GMA if our oncologists supported our efforts, we didn’t even know about anti-PD-1 immunotherapy until one of our oncologists told us, “we need to get you anti-PD-1.”

2) The inability of “the people that are caring for her” to provide Mikaela with access to the most promising drug for her condition is the very reason why we were forced to start the #WEGOTTHIS campaign, and ABC News’ chief health editor should understand that before commenting on our story. We’d obviously MUCH rather have our doctors be able to simply prescribe this medication to us or get us into a clinical trial instead of spending valuable time on a social media campaign.

As ABC News’ chief medical reporter, Dr. Besser had an opportunity to lend deserved credence to our statements about the potential demonstrated by anti-PD-1 immunotherapies in Phase I/II clinical trials; instead, he made an unfounded and irrelevant statement that distracts from the fight for Mikaela to have a chance at living beyond 25.

#WEGOTTHIS COMMUNITY: Should we take action on this? [comment below]

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11 thoughts on “Responding to Dr. Besser from GMA

  1. I only wish there was somewhere out of the country you can go to get the treatment you desire. It is clear that time is a luxury that Keith and Mikaela do not have.

    I would add a 3rd point. When interpret “people that are caring for” I also think of Mikaela, Keith and their families. Honestly, who would care more? It is Keith that is asking for the trails and no one else. Most people who are terminally ill do not “know of” or have a experimental treatment available and only can let nature take it course. Most people would agree that what Mikaela and Keith are asking is perfectly reasonable under the circumstances.

    Finally, I would also have something to say about the statement before this one “But some in the medical world worry about the social media pressure put on doctors, pharmaceutical companies and the FDA by masses moved by emotion rather than science.”

    1) Who are “some in the medical community”? Did these people choose to be anonymous? Why wouldn’t they want to become part of the national conversation?

    2) Does this statement even belong in this article? Does Dr. Richard Besser or GMA really think that Mikaela was denied treatment because of science? It so hard to entertain that drug companies do not want to gamble of treating someone that does not fit their trail criteria.

  2. Erin says:

    Absolutely we have to follow up on this. How DARE he make this sound like some attempt to get attention rather than to get Mikayla the MEDICAL CARE she desperately needs! GMA needs to IMMEDIATELY make this right and have Dr. Besser make an apology and retraction. My blood is boiling. I’m so sorry you had to have that thrown at you.

  3. Lauren says:

    His statement was simply ignorant. Being a ‘Chief Medical Reporter’ he is upheld to a certain standard and expected to exercise due diligence. Especially, when someone’s life is on the line! He failed to do so, by gathering critical information and facts in relation to Mikaela’s own personal set of special circumstances. If he had exercised this diligence before making his statement , he could have helped support your cause that more. Instead, due to his negligence, his statement could possibly hinder this difficult situation Mikaela and you are facing. His opinion could affect the opinions of other doctors and the public as well. Due to the circumstances and the length of which you two are going to try and provide Mikaela with this essential clinical trial medicine, I believe, you should take action! The way in which he went about this and his failure to obtain critical details prior to making this statement was not professional. My prayers are with you two and your family!

    Sincerely,
    Lauren

  4. Erin Harreld says:

    I’m so sorry for spelling Mikaela’s name wrong above. I tweeted Dr. Besser and he tweeted me back. This is what went down so far:

    Erin Harreld ‏@paxtonfan
    @DrRichardBesser How can you be so cruel? How DARE you imply Keith Knapp’s fight for Mikaela to get the right medicine is just for media.

    Richard Besser ‏@DrRichardBesser
    @paxtonfan Huh? Point is that those who can effectively engage media will get preference for their loved one. Those who can’t engage, won’t.

    Erin Harreld ‏@paxtonfan
    @DrRichardBesser That wasn’t what you said and that wasn’t your point. You implied they are trying to get treatment thru media, not doctors

  5. Nevin says:

    Absolutely take action! My mother (55) has been battling stage IV colon cancer for the past two years. She has not responded to standard treatment as her tumors are mucinous and have the KRAS mutation, making them much harder to kill. My research has pointed me in the direction of anti-PDL1 trials and that is what I’m currently looking into. The list of inclusion/exclusion criteria is insane. Our loved ones should have easy access to these drugs if they so choose to try them, but if we are forced to take different measures to try to save their lives, then Keith, that is what we must do. No one, least of all a doctor, should try to undermine our efforts.

  6. Budd Geiger says:

    I agree with you completely. The young boy they mention who was given access to an experimental drug last month was obviously doing so with the approval and care of his team of pediatric oncologists. These drugs are given by Doctors in a hospital setting, and it is not only wrong to say otherwise, it is immpossible? The drugs are often given through IV infusion, and even if the drug where available through another delivery method, (which is VERY unlikely) the patient is still going to need an IV for the administration of other medications in almost all cases. I find it counterproductive for GMA and their Chief Medical Consultant to report the story as if patients who seek compassionate use are going to take the drug home and experiment! How ridiculous is it that the Doctor does not to know this fact? It saddens me that they didn’t mention that every patient who uses drugs in clinical trials, or through compassionate use, does so for not only with the hope that it helps them, but also often times as a sacrifice for the greater good of all those who suffer from similar illnesses in the hope that the experience gained by the pharmaceutical companies will aid in FDA approval! I lost a cousin in the last year and a half to a very advanced case of rectal cancer. I know that after he had exhausted the normal protocol of oncology treatments available, he too was taking clinical trial medication in the hope of both a miracle for his two very young daughters and his wife, as well as the hope for all those who will suffer his plight in their thirties. He was diagnosed on his birthday, and died the following year at the same exact time. His treatment may not have saved his life, but it did give him more than twice what the original diagnosis had stated in time with his family. I cannot imagine that GMA would have presented the story the way they did if it had been discussed in detail prior to the airing. I know that time is of the essence here, but the lesson should be to ensure that our irresponsible media reports your story accurately, and without any bias from a reporter or Doctor who has never been in your situation. Being a good Doctor does not mean that the individual will consider a situation from every perspective, or that they are also a good clinician who would truly understand the many sacrifices made by those who participate in trials involving patients with a grim prognosis. It is the clinicians who work diligently through very difficult odds who are qualified to make an opinion comment on the use of these medications which the pharmaceutical companies work endlessly to get FDA approval for. It is those Doctors who are truly qualified to comment on compassionate use, not a Chief Medical Consultant who in great likelihood has no clinical experience to speak of, and doesn’t truly know first hand what these patients and there families go through and are willing to risk for the greater good of all of mankind!

    Budd G. Florida

    Sent from my iPad

    >

  7. Keith,

    My apologies for not answeimg the question. I don’t think their is anything you have to do. You have to say focus at the task at hand … Getting Mikaela the opportunity to access these anti-PD-1 drugs.

    I thought that ABC made a feeble attempt at fair and balance journalism. However, overall anyone that saw the clip got the message, “Mikaela should be allowed to be treated with anti-PD-1”

    Don’t take my word for it. Look at the number of people that signed the petition since the GMA segment aired.

    When you asked a media outlet to tell your story, you have no control how they will spin it.

    Dr. Richard Besser should have taken more care in what he said. I really don’t understand anything he was trying to say.

    As for any supporter in the #WeGotThis community, I recommend following suit with Erin Harreld and send constructive criticism to the good Dr. on twitter @DrRichardBesser.

    Mikaela getting access to the anti-PD-1 drug is not a question of science … It is a question of humanity. The people that will have Mikaela’s best interests at hand are her family … Not the FDA, not doctors and certainly not the drug companies.

  8. Shea says:

    Hi Keith,

    I definitely think that GMA could have done a better job toward the end of the video. Watching it that day I remember the hosts commenting afterwards that they were not satisfied with it either, like us!

    In the Forbes article, David Kroll tastefully and briefly writes, “We’ll continue to follow this case and, in general, the effect of social media on compassionate use requests” (http://www.forbes.com/sites/davidkroll/2014/03/26/husband-seeks-compassionate-use-of-anti-pd-1-drug-for-wife-with-rare-kidney-cancer/). The rest of the article addresses the heart of the matter: getting Mikaela that drug! Unfortunately, we (i.e., past, present, and future generations) are at a time where social media is embraced more than ever but still controversial. So, while it is fair, to a degree, to mention its controversies, it is unfair for GMA to let it detract from viewers’ understanding of Mikaela’s overall need.

    As others have suggested, perhaps it’s best to continue pressing the drug companies and let the public filter out careless responses. At the same time, if #wegotthis troops are able, it could be worth contacting GMA and asking for the air to be cleared surrounding Dr. Besser’s comments. A small team could be devised just for this! On the other hand, it might draw more attention to the issue stealing valuable time away from the pursuit of anti-PD-1/anti-PD-L1.

    It totally rubs the wrong way, too! All in all, my answer is that I do think it would be worth it to put together a small team from #wegotthis to do the groundwork here while every other bit of effort is geared toward better editing in the future and chasing those drug companies down.

    You both have my support either way! Praying God to help guide your decision.

    Sincerely,
    Shea

    • KJ says:

      Totally agree with Shea. While your time is best spent together right now fighting, perhaps a group can assist with other areas. Whatever you decide prayers are with you.

  9. Kierrah says:

    Don’t pursue it, you have other, far more important challenges to take on rather than to point out the shortsightedness of one unfortunate comment. There’s a point but it’s not that important, besides, it really only looked bad for him, not you. Don’t give it another thought.
    Definitely let it go and focus on moving forward!

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