American Acne & Rosacea Society, too close to Big Pharma ?

Written by on September 20, 2013 in in the news, research foundation with 1 Comment

A really interesting post over at `medpage TODAY’ is asking just what is the American Acne & Rosacea Society is up to, and asking the question are they too close to the bigPharma that they are funded by.

We first learned of the existence of the AARS in 2006. Whilst it was puzzling as to why a new society was needed, it was still a welcome sign that a new body with an emphasis on rosacea was being created.

Since 2006 the AARS has released their Rosacea Treatment Guidelines and also their recommendations for treatment of childhood acne. It is this childhood acne recommendations that has raised the interest of medpage TODAY.

In particular Mr. Fauber is asking why the childhood acne recommendations seem to favor very expensive `combination treatments’ when two much cheaper treatments could have sufficed. Further Dr. Lyon asks why the AARS didn’t take into account the cost of their recommendations.

It certainly is tempting to ask why does it appear that the same expensive front line products manufactured by the companies who sponsor the AARS appear to gain prominence in the AARS recommendations.

In particular Mr. Fauber asks why Ziana which retails for $743 was given an A level in the guidelines, and why Acanya, which retails for $426, is mentioned when two equivalent treatment components for benzoyl peroxide and clindamycin would cost just $140.

Guideline$: Following the Money in Acne Treatment

By John Fauber, Reporter, Milwaukee Journal Sentinel/MedPage Today

When the American Academy of Pediatrics endorsed guidelines recommending expensive prescription drugs to treat childhood acne, it didn’t tell doctors this: 13 of the 15 experts who drafted the guidelines were paid consultants or speakers for companies that market the drugs recommended in the guidelines.

Or this: The organization that developed the guidelines — paid the academy to publish them — received 98% of its 2011 revenue from companies that make acne drugs.

The guidelines give a special nod to combination products, saying that, even though they may cost more than single agents applied separately, they are “very convenient” and because of that it may improve how well kids use the products, or what is known as adherence.

She said the guidelines could have done more to compare costs of the various treatment options.

Lyon said she always asks parents about their ability to afford a treatment option. Often, she finds that the combination products are too expensive.

“When you are talking about treating somebody, that’s really what matters,” she said.the guidelines could have done more to compare costs of the various treatment options

What about the AARS Rosacea Recommendations?

Is there implications for the AARS Management Guidelines? Well the AARS doesn’t recommend any rosacea treatments by name and seems to cover many topicals and oral therapies equally regardless of who manufactures them.

There is a good mention of `40mg controlled-release’ doxycycline before pointing out that >= 50mg of generic doxycycline is considered anti-biotic and thus may be inferior.

This promotion of Oracea by inference is a a bit specious in my opinion as 50 mg a day vs. 40 mg a day calls into question the additional cost vs. benefit of Oracea. Given that Galderma funded the AARS to the tune of $176,000 in 2011, we can at least ask look carefully to see what influence this funding may have had on the guidelines.

My Thoughts

As rosacea sufferers we need new treatments to be funded by someone. Big pharmaceutical companies are one of the few places where such funding could be sourced. That is all well and fine, but we do need to be sure that the official looking bodies that offer advice to consumers have clear trails of accountability and easily gleaned potential conflicts.

I continue to hope that the AARS will be able to supplement the National Rosacea Society and offer funding and support for the advancement of rosacea suffers. Lets hope so.

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About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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1 Reader Comment

  1. Nice article you wrote with some insightful comments on the AARS. The big difference is that the AARS is a 501 (c) 6 while the NRS is a 501 (c) 3. Big difference. The most famous 501 (c) 6 organization is the National Football League:

    http://sportsfans.org/2012/03/why-is-the-national-football-league-given-tax-exempt-status/

    Check out Wikipedia to understand the difference:
    http://en.wikipedia.org/wiki/501(c)(6)#501.28c.29.286.29

    Askville explains it this way:

    The 501 (c) 3 is for charities, arts organizations, and other groups in the public interest. They’re exempt from taxes but they are limited in the kinds of political operations they can perform. And money you give them is tax deductible. They’re not allowed to lobby the government; they’re supposed to spend their money helping people.

    501 (c) 6 is for business leagues: chambers of commerce, real estate boards, and (amusingly) professional football leagues. Donations are NOT tax deductible, but they have more freedom to engage in political activities (though specifically lobbying for a particular candidate is forbidden).
    source:
    http://askville.amazon.com/difference-501c/AnswerViewer.do?requestId=2400614

    For the official rules for 501 (c) 6 organizations:
    http://www.irs.gov/pub/irs-tege/eotopick03.pdf

    The NRS, while currently designated a 501 (c) 3 must provide proof to the IRS that “a substantial part of its income, directly or indirectly, comes from the general public or from the government.” If you look at the Form 990 they have a difficult time proving this since a substantial part of the NRS’s donations come from pharmaceutical companies. As long as rosacea sufferers continue to donate to the NRS they can keep its 501 (c) 3 status. It the majority of its donations come from pharmaceutical companies the NRS may lose its 501 (c) 3 designation from the IRS and may possibly have to be designated a 501 (c) 6, as the AARS.

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