New MS Drug

Today’s New York Times story about a new MS drug is tantalizing. FDA Approves First Drug for Severe Multiple Sclerosis, the banner reads. What could that mean? I have been known to complain about medical hype, but this =is the Times.  I read on, curious to learn if my SPMS or the more virulent PPMS could be helped..

“Ocrevus by Genentech, showed the most notable results,” according to the Times, “in patients with relapsing multiple sclerosis, appearing to halt progression of the disease with few serious side effects. In patients with the more severe form, primary progressive multiple sclerosis, the drug only modestly slowed patients’ decline, but medical experts described it as an important first step.”

Wow. Another first step. Should we be excited? I guess every step forward matters. How much is open to question. Am I overly negative or just cynical? Big headlines sell products. Genentech said Tuesday that it would charge a list price of $65,000 a year. That is a hefty price tag for uncertain results.

13 Responses to New MS Drug

  1. Jan March 29, 2017 at 1:14 pm #

    All good questions, and with a helpful link (read it all, the fine print, and associated links).

    I think that many really do aim to help. But also, business is business, and meds are big business. (Just how much money is spent on all of the mostly annoying pricey drug commercials, and who pays for that?) Hmm.

    Even though life is not simple, I’m sticking to the emotional, diet, PT and exercise, and living life amidst it all right now, thank you very much.

    • r. cohen March 29, 2017 at 4:12 pm #

      I think Big Pharma exploits veulnerable patients.

      R.

  2. Jan March 29, 2017 at 5:30 pm #

    I think so, too, and it is just not in my DNA to follow doctors’ status quo ideas in that regard. Other than the pay, I would imagine that being a neurologist has particular challenges in trying to help when there is no cure. At least with what I do, albeit very part-time, there is a sense of accomplishment.

    Statistical evidence can be helpful with overall numbers but not always so much so personally. Too risky and costly for me.

    My issues have gotten harder with a lot of stress, but I still operate was a can-do attitude and aim to do that which I can do.

  3. Jan March 29, 2017 at 5:33 pm #

    with, not was…
    I do not think there’s an edit button here, so I should do a better job of proving.

  4. Jan March 29, 2017 at 5:35 pm #

    I am laughing… I just did it again as you can see. And next time I’ll use my PC so I don’t take up so much space!

  5. Laurie March 29, 2017 at 9:19 pm #

    I’m 63, long in a wheelchair, with, like Richard, SPMS. This would have been terrific news for me 20, even 15, years ago; today, at $65k/yr (even with pretty good insurance), not so much. I will wait, at least 6 months and more likely a year or more, to see how patients do on this drug and what, if any, problems develop (the article did mention a few tumors in the PP cases) before talking to my neurologist. But, if anyone reads anything credible that uses the word “reversal,” please let me know — that would be a great day.

  6. Christopher March 30, 2017 at 3:55 am #

    I made a mistake in the post. I should have written ‘the scariest variant of MS’ instead of ‘scariest version.

  7. Jan March 30, 2017 at 9:14 am #

    “The Today Show” just had a spot on Ocrevus about a woman from Converse, TX (near San Antonio–love Google) who went from a wheelchair an inability to rise in the morning to walking her dog. It sounds so simple. (Sounds so).

    And Christopher, so I am not the only one who makes online mistakes (but for me, I need to always stick with my PC, not phone :).

  8. Christopher March 30, 2017 at 2:17 pm #

    My post hasn’t shown up yet because it has links embedded in it and needs to be approved first. But basically I was commenting on the point that this drug, even though not perfect, is a chance at hope for people with the worst form of MS (actually fulminant MS is the worst, but it’s extremely rare). Also there’s pretty cool news about how MS works, and ability to repair damage to the myelin using genetic engineering–which should come much sooner than widely available stem cell therapy.

  9. Yvonne April 1, 2017 at 11:07 pm #

    Snake oil salesmen with their magical elixers. Wizards of Oz. Unfortunately many of us looked behind the curtain so we can no longer be fooled by the spectacle. After 40 years of promised miracles I am annoyed not hopeful by these announcements. Pharma is about money not cures. This lastest BS announcement is just that… BS. The media loves BS these days so when you see flashy announcements hold your nose!

  10. Sarah April 3, 2017 at 9:56 pm #

    All the hype on this “new” drug is really an old drug being off-branded to get approval for a new disease to make big money all over again. Ask your near about Rituxan. Its an RA drug, but targets what this “new” MS drug does – B cells

  11. Sarah April 3, 2017 at 9:56 pm #

    neuro not near

  12. Maria J. April 21, 2017 at 9:11 am #

    I was one of the “lucky” study rats for the drug. It was confirmed that I was receiving the drug in the study. I am much worse now and the others also in the study at my location also didn’t fair well. My understanding is that if during a trial someone says that their big toe feels good it gets recorded as a positive effect of the drug. Wish the media would do a better job

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