Drug Hype?

The Daily Mail called ocrelizumab, “A Huge Breakthrough Drug” for Progressive Multiple Sclerosis, adding the claim it was a “game changer.”   Where have I heard that before?   When Biogen was ready to turn Antigren loose on the market, their PR machine went to work and elevated patient expectations to dizzying heights. Antigren became Tysabri, knocked off a few MS patients and was yanked off the market. Tysabri was then allowed back with no fix, only a bolder warning.

I do not believe anything I read in the popular press about new wonder drugs. I asked a few MS docs about Ocrelizumab and was told it is basically Rituximab. I did a few rounds of that drug with no result. Why would I have high hopes for the new stuff, especially when I have SPMS, not the real target, PPMS? The press lumps all progressive M together.

The trial results did sound promising.   Patients with PPMS need hope and have been surviving in their no-therapy ghetto for too long. I wish them well. I just worry about news-hype. Too often newspapers are sold with stories that overstate.   If a drug sounds too good to be true, Maybe it is.


12 Responses to Drug Hype?

  1. Jane Weaver January 3, 2017 at 6:53 pm #

    Thank you, Richard. I love your blog.

  2. Jan January 4, 2017 at 11:12 am #

    I’m about to waive the white flag today.

    I said, “about to” — not typical language in my DNA. If I’ve learned one major thing re this election (and I will make no comments about the topic itself), it is this: to be far more savvy regarding what I see and read, and more fully understand the source, the motivations, and impact.

    Likewise, re Richard’s post the same holds true regarding drug information. And other natural approaches, as well. All things seem to work for some, not for others.

    What I can say is that I think that items of major stress have exacerbated my issues of walking (rather, non-walking), and pain. It is daunting with SPMS at nearly year 12.

    But I’ve also encountered people or myself have known others who have died because of cancer, drugs, suicide… all that is very daunting, too. So each day I forge ahead and aim to be grateful for something.

    RICHARD, a Q: with MailChimp, I’ve noticed that we no longer seem to be able to see a response number after each post (only the current/previous one). I think it could be helpful to be able to scroll back farther to read others’ insights when I aim to find something. Can they do that if you are interested and ask? Thanks.

  3. Jan January 4, 2017 at 11:16 am #

    To be specific, a friend mentioned ibudilast. If I recall correctly, Christopher commented about it, and I’d be interested to review what he had said. Thx.

  4. Yvonne January 4, 2017 at 6:13 pm #

    Thanks Jan. I noticed the same thing with post. It is nice to be able to see past responses as there is a lot of good information that I was unaware from posters as well as Richard. The drug rollercoaster for headlines is dizzying. Those of us that have been around for a while waiting know better than to buy a ticket. Feel bad for newly diagnosed who are desperately searching for relief. Shame on the FDA AND THE DRUG COMPANIES when they know better.

  5. Jan January 5, 2017 at 10:15 am #

    I agree, Yvonne… and it is rather amazing what making a profit I will do to people.

  6. Jan January 5, 2017 at 10:19 am #

    Ignore that “I”… i’m on my phone and obviously do better with my PC.

    Case in point: the EpiPen debacle.

  7. Hilary January 5, 2017 at 10:26 pm #

    Sometimes all we have are hopes. What is the other option?

  8. Yvonne Brewer January 6, 2017 at 12:01 pm #

    False hope is not comforting. It can lead to depression once you realize that you are still without a viable drug to help. Remarketing this as a breakthrough is for profit not hope.

  9. Jan January 7, 2017 at 5:58 pm #

    I think that Hilary has a point about hope… I think we humans need hope, but the thing with this, though, is that hope may need to come from other sources, and for other reasons and purposes to be inspiring and make a difference.

  10. Ann Wells January 10, 2017 at 7:20 am #

    I have a close family relative who has been living/dying with PPMS for over 25 years. He still has hope that he’ll walk again, though the disease has rendered him quadriplegic and in full-time care. I wish I could see light at the end of all this, but the slow, steady peeling away of his persona brings a grieving that is hard to describe. No hope here.

  11. Sandy Stolaronek January 12, 2017 at 9:44 am #

    I have been waiting for this drug with baited breath, thinking that it would be the answer to my hopes and dreams to at least help me feel better and hopefully slow down my progression, as Tysabri is no longer providing any relief. I’m still excited for this drug and I can’t wait for it to be available, but I just hope that my insurance will pay for it!

  12. Sue in TX January 19, 2017 at 12:29 am #

    I noticed that my large health insurer contracts with express scripts, which dispenses many generic drugs which are made in India. I felt one of my non-ms drugs wasn’t doing its job after I was switched over and so I looked at FDA approval letter (yah nothing much better to do) and I discovered it was deemed to meet the range of active ingredients. So (having nothing much better to do) I looked up the study done by the the Indian plant. It tested the generic drug compared to the brand in healthy [presumably Indian] men ages 19-40 years old with BMI of 25 and while fasting. Humm. I meet none of those criteria. And the drug doesn’t require one to fast or refrain from food. How is it that the FDA finds this: 1) an acceptable comparison to brand and 2) an acceptable measure of effectiveness in people with other demographics?
    So not only do I feel MS drugs are over-hyped, I think are other medications are as well. I’m disappointed in FDA, big pharma, and researchers. blah