Epilepsy Talk

What Is the FDA Thinking? | June 17, 2021

Getting the FDA to retract a decision is like getting the toothpaste back into the tube, once it’s been squeezed out.

Take the current all-star Alzheimer’s drug aducanumab. It’s not a proven but it IS approved. To the hefty price tag of $56,000 a year!

If the drug was prescribed to just one-third of eligible patients, it would cost Medicare $112 billion a year.

But that same society won’t pay for a caregiver who might actually ease the burden on families who have a loved one with Alzheimer’s.

The FDA does not and cannot guarantee that drugs that come to the U.S. market actually help Americans live longer or better lives (beyond what the drugs themselves can achieve).

At the same time, the FDA insists on interfering in the market and sets arbitrary standards for approval.

The combined effect is the worst of all possible worlds: we don’t know if drugs work, and the companies can charge massive prices for them!

Whose interests is the FDA protecting?

To find out more, read the MEDPAGE TODAY article by Vinay Prasad, MD, MPH: https://www.medpagetoday.com/opinion/vinay-prasad/93136?xid=nl_vanayprasad_2021-06-16&eun=g678261d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=VinayPrasad_061621&utm_term=NL_Gen_Int_Vinay_AYWDRL_Large_Active

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  1. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — June 17, 2021 @ 8:41 AM

  2. Whhaaaaat ? Is this the same FDA being questioned that I always knew opperates this way ? FDA NEVER CARES about 1 persons health to begin with. I would never had seizures for all my life if they did care. They ”will always” approve drugs that makes MORE side effects to come along with taking the drugs, so doctors can prescribe another drug or more to control those symptoms caused by side effects from a drug taken to CONTROL SYMPTOMS ONLY not stop the problem. Follow the money. That’s why there will never be 1 AED’s/ASD’s made that will stop seizures & make brain chemistry normal at the same time, or to help make normal brain chemistry with some other brain condition like MS, PARKINSONS, AUTISM & etc… IF there ever were 1 drug to help make for normal brain chemistry, I wouldn’t be typing this, and my brain would not need that drug for my lifetime, as it would heal itself after it was given what is needed to start that brain chemistry it needs.

    Liked by 1 person

    Comment by James D — June 17, 2021 @ 9:41 AM

  3. Yup. Just read the whole article (as I’m sure you did). You’re singing to the choir here, James.


    Comment by Phylis Feiner Johnson — June 17, 2021 @ 9:53 AM

  4. Nursed dad through Alzheimer’s, about all you can do is stop them wandering off or turning violent, there hasn’t been any magic cure found yet, it means actual brain damage

    Liked by 1 person

    Comment by Gail Barry — June 17, 2021 @ 10:19 AM

    • Thats what both my husband & twin brother did 5 yrs ago with their mom ALZ , & cancer on the check , dr wanted to do chemo , both sons said no way .. , had hospice come in too went peacefully .. but a friend told me for the persons with ALZ , Go to Home depot, Lowes , to pick up certain door knobs reversed doorknobs , usually for children with autism , but also works for those with ALZ

      Liked by 1 person

      Comment by Cathy Flowers — June 18, 2021 @ 9:24 AM

  5. They call care giving for an Alzheimer’s patient “The 36 Hour Day”.


    Comment by Phylis Feiner Johnson — June 17, 2021 @ 12:06 PM

  6. And some want more government healthcare.

    Liked by 1 person

    Comment by Tom Waltz — June 17, 2021 @ 1:24 PM

    • Notwithstanding FDA’s handicaps & mismanagement, corporate empires got more incentives to wreck the public healthcare system than the FDA.
      Therefore, be careful of what you pray for.

      Liked by 1 person

      Comment by Gerrie — June 17, 2021 @ 9:29 PM

      • Yes. Let’s not forget BIG Pharma. But don’t you think that’s whom the FDA is catering to? Follow the money. Lobbyists and politics will follow.


        Comment by Phylis Feiner Johnson — June 18, 2021 @ 9:00 AM

  7. I seem to remember that the original food pyramid – not the current one – came into being as a way for the government to support American farmers, rather than as an aid to us getting and staying healthy. Not sure who did the lobbying. In this case, I’d say it was the pharmaceutical industry.

    Liked by 1 person

    Comment by HoDo — June 17, 2021 @ 2:35 PM

  8. Who else??? 😦


    Comment by Phylis Feiner Johnson — June 17, 2021 @ 3:34 PM

  9. So long as the FDA oligarchy is not accountable to public scrutiny, the healthcare system does NOT serve public interest.
    Millions of helpless lives should NOT be left behind to languish in pain for political gambit & corporate financial gains.

    Liked by 1 person

    Comment by Gerrie — June 17, 2021 @ 9:56 PM

  10. yeah sounds like when the newer drugs ie : Keppra and many others after keppra came out , couldnt believed drug stores wanted 600.00, then when the generics came out many insurances didnt want to touch it … + even cancer drugs are outrageous

    Liked by 1 person

    Comment by Cathy Flowers — June 18, 2021 @ 9:27 AM

  11. A little off topic but, brand-name Viagra pills cost at least $67.12 each, or $2,013.70 for 30.

    That’s a remarkable markup of over 150 times the generic price, even though the pills share the same active ingredient and work the exact same way.


    Comment by Phylis Feiner Johnson — June 18, 2021 @ 9:32 AM

    • Thanks, Phylis. It’s an important part of the same subject because we can have an expensive month-by-month medical condition to keep our seizures under control. Some of our neurologists are aware how much the medication costs and many have not a clue. That’s a bit scary.

      One of the members of a support group I attend was talking about his neurologist thinking about putting him on epidiolex. I admit I am confused on what it costs due to different information in medical articles, insurance company coverage, discount coupons, etc … What I did ask the members of the group is whether or not they had ever asked their neurologist is if they knew what the prescription actually cost. Not one member of the group had.

      I have no problem being that annoying patient who will inquire about the monthly cost of the medication and recently my neurologist has taken to letting me know that he is not being “sponsored” by whoever it is that manufactures the medication. He usually prescribes a generic if available. I’m fortunate that a generic usually is available.

      Liked by 1 person

      Comment by George Choyce — June 18, 2021 @ 11:55 AM

      • My neurologist works part-time with underserved populations. He knows the cost of every pill he prescribes.

        Liked by 1 person

        Comment by HoDo — June 18, 2021 @ 2:42 PM

      • WOW. You never cease to astound me, HoDo. Even in your choice of doctors!


        Comment by Phylis Feiner Johnson — June 18, 2021 @ 3:00 PM

      • Good for you, George. An honest doc and a good advocate for yourself.

        The people in your support group should take a lesson from you.


        Comment by Phylis Feiner Johnson — June 18, 2021 @ 3:02 PM

  12. He is an amazing true physician. He also has a great sense of humor. Though not everyone would agree, I find it a relief to be able to make brain jokes with my provider.

    Liked by 1 person

    Comment by HoDo — June 18, 2021 @ 3:12 PM

  13. Hodo, you’ve found any “amazing Neurologist?” What luck! Would you or any others on this blog care to divulge their doctor’s identity, if on the west coast? This will be my 8th (and hopefully last Neuro), and I’m so frustrated. Thanks!

    Liked by 1 person

    Comment by skolly9 — June 25, 2021 @ 6:51 PM

  14. Thanks Hodo, I appreciate it! Perhaps he has some suggestions of his own, as well!

    Liked by 1 person

    Comment by skolly9 — June 25, 2021 @ 10:57 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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