Science & Medicine

Corrupted by the Internet

 

The Internet can make freeloaders of us all.

MPN survival is not a spectator sport.  On this journey, you can’t expect to sit back, ask a question or two and then just lurk in the shadows observing.   It’s also not a free lunch. Somebody pays.

Blame it on the Internet. Gmail, Facebook, Google…all free. Except they make hundreds of millions of dollars by tracking our activities and selling the data to advertisers.  That free ride costs us our privacy…plus the hidden price increase we pay for stuff we buy since those advertising costs have to get covered.

And the Drug companies. They donate funds, support events, offer free help on-line. It’s all a PR/marketing trick. Did you know our friends at Incyte raked in 1.3 BILLION dollars on Jakafi in 2017 alone. $1,300,000,000

And then there’s that other world.  Our world. MPNforum. We’re the MPN community and we’re in this together. No advertising. No grants. No subscription fees. Just us

But some of us are confused. This is the Internet, right, What’s with asking for money?

Here’s why. For the privilege of covering the ASH San Diego conference, an exhausting affair for even the most hardy of us, we need $2487. To cover direct out of pocket expenses. No charge for interviews, writing, production and printing the magazine. 12,000 of us read each issue. If we each coughed up a 25 cents —  15 minutes on the local parking meter — we would have the trip covered with change to spare.

  Not everybody can contribute funds. That’s why we set up the Small Donation Program. Anything                                                           from $5 on up to $100. We put a lid on maximum financial contributions because none of us should have an outsized influence on content based on big bucks..

  And that’s the final point. There’s only one non-commercial, on-line, all volunteer medium serving the MPN community. It’s managed by professional editorial and science writers and serves up the creative contributions of over 200 patients, caregivers, physicians and scientists. You can see our track record in the Graphic Catalog of Articles.. More breaking news, more investigative journalism, more pure science and medicine reporting than the combined MPN commercial media supported by Big Pharma advertising.  When MPNforum reports a story it has been fact checked and validated at the source.

So when we ask for carfare to cover a meeting, we’re not doing it lightly. We doing it for you. And me. And all of us. There are real world costs to cover, real results to report.  Thank you!

The Small Donation Program — Any amount from $5 but nothing over $100.

MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

 

Comments on: "Corrupted by the Internet" (9)

  1. CharlieNielsen said:

    Hi Zhen, I sent a donation; but not sure it went through. Perhaps I missed a click somewhere. Let me know if you did not receive and I will redo. Thanks, hope you’re enjoying a great long week-end! Charlie

    >

    • Andrew Schorr said:

      Charlie, i understand your comment but I don’t totally agree on a couple of points. First, the drug companies have to make a profit irvelse they will have no investors for drug development. Second, i do not think most people in drug companies are money grubbers. I think there are many who want to help us do better and be cured.. how do we get new drugs if there is not enough govt research and we leave ut to capitalism? My hope is more competition. And I am down on broad drug tv advertising. I am for supporting independent education, as you know.

  2. I applaud you for your efforts and passion. But I don’t agree that media, supported by advertising or sponsorships are necessary suspect. Do you feel that way about the NY Times, CNN, MSNBC? I don’t. It’s independence and credibility that are critical. As for us, we have many patient contributors and no one tells us or the medical experts what to say.

    • You have an excellent point, Andrew and I thank you for raising it in this context. The NYT, Washington Post, and NPR are among the few glittering media exceptions that are beyond advertiser influence, generally. The examples on the other side are legion. Think National Enquirer. I worked for a newspaper bought by Rupert Murdoch and saw the process up close. As I’ve said in the past, I think Patient Power performs an enormous service for our community by bringing professional level video to our computers, by traveling to major MPN events. I have, however never seen a PP video critical or seriously probing an interviewee or present a serious independent investigative report beyond the interview format. (It really might be an option for you and your talented crew.) For what it’s worth I am also against medical professionals receiving monetary compensation of any kind for corporate consultation or promotional appearances on behalf of drugs for which they are also investigators. It is hard to be independent when your sole sources of income are the drug companies and medical institutions on which you report and the advertisers seeking to reach that market. MPNforum elected to be dirt poor and unencumbered by potential conflicts of interest. It’s not always comfortable and never really easy but we’ve been doing it for seven years and I’m convinced it’s the appropriate path for a patient advocacy medium. Just as I’m convinced that Patient Power is a significant educational force in our community.

  3. Jane Frantz said:

    Thanks as always, Zhen. Donation send and seems to have worked!

  4. Tried twice to donate and wouldn’t process.

    Bradley J. Schram, Esq.
    Hertz Schram PC
    bold, forward thinking & uncommonly creative
    bschram@hertzschram.com
    http://www.hertzschram.com
    Bio

    • Hi, Bradley… Sorry for the difficulty. I just tried that link, made a donation and it went through. I wonder if the problem is your browser…maybe try Chrome or Fox? You also might try clicking on the DONATE button in the sidebar of the email or page you”re on?

      Thanks,

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