Hidradenitis Suppurativa Patient Website: Does It Live Up to Its Name?

Feb 22, 2019 | AbbVie, Blog, Hidradenitis Suppurativa, Humira, Patient Website

Recently, a TrialSite News reader—a Hidradenitis Suppurativa (HS) patient—brought a website to our attention. Apparently, this individual, who has been struggling with HS, was searching for an HS doctor. She Google-searched the search term “best Hidradenitis Suppurativa doctor,” and found what appeared to be an interesting and independent informational website titled “No BS about HS.” The website design includes a photograph of a purported HS patient with a quote—thankful that her doctor was able to provide a diagnosis for the HS—plus treatment options. Overall, this was a promising find.

When a website has a name like “No BS” in it (read No Bullshit), we are inclined to think of it as an independent, objective and frankly, non-industry sourced property. However, the website is sponsored by multinational pharmaceutical company AbbVie—the makers of Humira. Now, there is nothing wrong with a pharmaceutical manufacturer producing a website to market its products. After all, these companies spend enormous amounts of money on research and development (R&D). It is normal to promote approved products to generate sales, and without a reasonable return on investment (ROI), the continuous R&D would cease. AbbVie has done that and more with Humira. It is the number one selling drug in the world—approaching $20 billion in sales. We have written extensively about HS and the fact is that Humira works for some with the ailment, but certainly not all by a long shot. Moreover, a few patients have sent us reports of material side effects and concerns about using the powerful biologic.

As a result of this, we decided to dig deeper into the website. Did it live up to the spirit of its name? The dermatologist doctor search is a prominent feature, as the site makes it easy to find a skin doctor based on the searcher’s zip code. We wondered, however, are these physicians in any way connected with the drug maker’s sponsored website, or is it just a generic dermatologist directory? We do have some reason for concern as we have covered ongoing situations such as the California Attorney General Office suing AbbVie for allegedly pushing Humira prescriptions on to patients.

These allegations are not proven yet, but they are alarming. At the core of the government’s case is an allegation that AbbVie structured a “kickback scheme” in connection with Humira. Namely, the California Attorney General alleges that they are violating the Insurance Frauds Prevention Act (IFPA) by providing kickbacks to health providers throughout California.

Messy allegations aside, and assuming that the intention of this site is indeed no BS, we commend AbbVie for investing in a nice-looking website which includes searching dermatologists by zip code for the ease of finding a doctor, videos sharing HS patient experiences and other informational resources. From “daily management tips” and “tips for inflammation care” to “tips for lifestyle changes,” there is a recognition that the company is making a good-faith attempt to socialize good information with those struggling with HS. The section “Being Social” encourages the visitor to, well, be social and share their stories with HS via an “Add your Voice” feature which supports the upload of text, video, etc. Several examples of HS patients appear to be sharing various experiences that others can learn from.

Under “Treatment Options for HS,” the sponsor doesn’t exhibit any overt bias toward its Humira product and objectively outlines the categories of treatment with additional information—from antibiotics and corticosteroids to biologics and surgery. Of course when we selected the biologics link it led directly to a page on a different website—Humira. But the reader must understand that there are no other biologic choices within the United States, and all Humira biosimilars are blocked from the U.S. market until 2023. From the perspective of an MBA, AbbVie has brilliantly designed and executed on a hundred plus patent thicket that effectively blocks competition. From a patient perspective, it means less choice.

TrialSite News felt that we could share this website with our HS reader community. We seek feedback as to your opinion on the usefulness of the site. Does the HS community feel that the website is providing unbiased, useful information? Does it help you understand more than other sites do, or is it in someway not meeting the bold connotation of the name—no BS? We look forward to receiving your feedback.


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