DTCA 2.0 & RareShare

I know, I know, everything is “such and such 2.0” now, and it’s getting really old.  I agree!  However, this really is “2.0,” as direct-to-consumer advertising (DTCA) of pharmaceuticals has officially moved from being all “push” media into its own special social networking universe. Check it out:

The Toronto Star called my attention to the social networking website http://www.RareShare.org last week. The uncritical article by the “Faith and Ethics Reporter” acclaimed RareShare for creating online support for the “forgotten people” who have diseases so rare that there are no local face-to-face support groups.  Call me cynical, but I wish the article went a little heavier on the ethics and a little lighter on the faith in altruistic corporate goodwill.

The RareShare site is tight-lipped about its corporate sponsors. From publicly accessible information, we know that the 2 founders of the site are U.S. business guys with specialisations in high-growth tech and biotech and communications. We know one of the corporate partners behind the RareShare site is Nutra Pharma, currently testing a drug for the rare disease adrenomyeloneuropathy.  And we know that, in addition to “moderated” (by whom?) discussions in communities organized by disease, the site plans to have doctors (presumably those who are friendly with the corporate sponsors of the site?) holding online Q&A sessions with community members.

The Privacy Policy is a bit odd, in that it appears to have been written for another website. ?? They collect your email address and track your travels in order to improve their page, customize their content to you, etc. They’ll remove your name and phone # when they share your info with other companies. They use cookies, and record session info, “such as items that consumers add to their shopping cart”?  Shopping cart?  Huh?  If you give your telephone #, they’ll only use it to contact you regarding orders you have placed online? What kind of a website is this anyway?

It is perhaps worth noting that the RareShare defintion of “rare” is considerably broader than some other lists of rare diseases, including such conditions as gestational diabetes, which occurs in about 4% of pregnancies, according to the American Diabetes Association. According to the Canadian Organization for Rare Disorders, “A rare or “orphan” disease affects fewer than 1 in 2,000 people.”  While expectant mothers with gestational diabetes may legitimately feel the need for more support, they are hardly living with a rare disease.  The inclusion of such common ailmentsparticularly ones such as diabetes that are hotbeds of new pharmaceutical interest, and sometimes lead to ongoing monitoring and medication for the rest of one’s life – do raise a question of drug company profit motive.

It’s all not necessarily fishy, but it is a perfect setup for embedded DTCA with a social environment created to reach vulnerable and isolated populations. Sort of makes me want to lurk around and see what goes on once things get kicking in their forums…

…So I admit it: I did just that. Here’s my report. The site is so new that there’s not much there yet, so it’s a bit hard to assess where it’s going.  There were about 160 members as of when I peeked in, most of whom appear to be patients or family members of patients. These individuals post seeking help, advice, and connection with others.  Many of them are disclosing their personal stories: their ages, location, when they were diagnoses, what drugs they’ve already tried, etc. They join ”communities” of diseases based on their actual or suspected diagnoses.

Then, there are 2 members who appear to be doing far more posting then everyone else: one of the 2 site founders, and the CEO of a drug company.  The site founder has joined several communities and posted welcome messages in the forums.  The CEO has similarly joined many communities and in some he has posted messages such as:

“We’ve found that an already existing class of drugs is effective about half the time in XYZ syndrome. Please contact me for details of our Next Generation Disease Management service.”

“We think an already existing class of drugs may help in XYZ disease. Please contact me for details of our Phase IV trial.”

”We think already existing drugs may supplement standard chemotherapy and radiation treatment for XYZ cancer. Please contact me for details of our Phase IV trial.”

In addition to clinical trial recruitment, there is already some advertising for lab tests, for example Designer Diagnostics test kits of Nontuberculosis Mycobacteria (NTM).  Each disease community “home” has a link to more information about the disease.  Many of these pages are still pretty empty, but in the case of a few, this link leads to a full page that does not document the source of most of its information.  On the NTM disease information page, for example, under “diagnostic tests” there is only one brand of test mentioned.  If you follow the link to more information about the test, you can read about why this test is allegedly better than other tests, and you can follow another link right to the website of the manufacturer of the test.

Annnnnd, if you follow enough links on the Designer Diagnostics website, you can eventually get to the fact that they have a parent company.  This parent company, unsurprisingly, is the very same Nutra Pharma that you may recall is one of the corporate partners behind RareShare.

What a coincidence.

There is a clear and present need for more support and networking among patients and doctors dealing with rare diseases. If the public sector is not going to provide this type of health care, information and support, it is natural that the private sector will naturally seize the opportunity. We should not for a moment, however, forget that firms, unlike public health infrastructures, work from a place of their own bottom line and fiscal responsibility to their shareholders. For them to actually act out of total altruism and concern for the patients would be a conflict of interest.

– Greyson



Filed under Health, privacy, privatization, technology

6 responses to “DTCA 2.0 & RareShare

  1. I’m sorry you feel that RareShare is “fishy”; however, it was started by me out of goodwill.

    The Toronto Star article was inaccurate in stating that Nutra Pharma launched it. The correct story is that I’ve worked for Nutra Pharma for several years and saw a need for this and decided to create it. In my personal life, I serve on several non-profit boards and thought that this would be an additional good use of my time and energy.

    In general, I think this post is overly critical of people trying to do a good thing for others.

  2. greyson

    Hi David,

    Thanks for your comment! It’s great to have you reading – and perhaps you can help us make better sense of some of the confusing elements of your new site.

    If Nutra Pharma is not providing corporate sponsorship of the RareShare site, who is providing the funding? Where can we find such information?

    What’s the deal with the privacy policy? Are there plans to expand and offer some sort of sales on the site?

    With whom does or will RareShare be sharing member information?

    Doctors and medical researchers are generally “trying to do a good thing for others,” but that doesn’t stop us from being critical of their conflicts of interest. Consider yourself in good company, perhaps.

    And if you are truly in this to provide online support groups without a profit motive, keep dialoguing with us so we can help you make the necessary changes to RareShare, such as making the potential conflicts of interest more transparent.

  3. greyson

    As an update, I have not heard back from David on any of the above points, but I did check back tonight and saw that the RareShare privacy policy has been revised. It no longer contains the references to e-commerce/shopping cart/orders, nor of using your telephone number to call you for any reason. What was behind the changes is anyone’s guess. The effective date at top of the privacy policy has not been altered to indicate that it has changed, interestingly.

  4. Greyson–interesting post. i love it that you read the privacy policy of a site.

    David–if there’s nothing fishy going on, why not be transparent and explicit about a possible conflict of interest with your former employer Nutra Pharma?

  5. greyson

    Further to my above update, it now appears that all postings from the drug company CEO that were promoting his “Disease management” and/or recruiting for phase IV clinical trials have been removed. Good. Still no official word on what’s behind the changes, whether they are the results of new site policies or just a one-off reaction to current criticisms such as the above.

  6. Pingback: Online drug advertising & the regulatory challenge « Social Justice Librarian

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