Migraines nearly got the best of me for a while. They took over my life for quite some time, keeping me in bed most of the time for a couple of years. I had the resources and the support system to get the help I needed, to get specialist care and get them under relative control. When the opportunity came along to do this kind of work, I wanted to help other people who need help learning about their Migraines or other headache disorders, knowing what kind of doctor to see, building a support system, and more. On top of that, four of our grandchildren have Migraines, and I want their lives to be easier than mine has been.
Unfortunately, a cold, hard fact of life is that no matter who you are or what you do, there will be people who look for ulterior motives and biases in what you do, and patient advocates aren't exempt from that.
One of the issues we're often questioned about is whether we've received any compensation from "big pharma." Personally, I don't see that as an issue for a person with good ethical standards because that wouldn't impact what they said or did, even if it were related to a product from a company from whom they'd received compensation. HOWEVER, I understand that quite a few people would have doubts about an advocate who had received compensation from a pharmaceutical company, so I have never accepted any. Never. I have had a couple of consulting contracts with pharma companies that offered compensation, such as contracting with Allergan to be one of the judges for their Rewrite Your Day contest, but I declined it.
For the record, I am paid by Remedy Health Media for writing content, answering reader questions, and managing the forum on their Migraine site on the HealthCentral Network. I'm also paid by Migraine.com, owned by Health Union, for blogging for them. Remedy Health Media and Health Union are businesses. They provide the sites to users at no charge by selling advertising space on them, as do most commercial web sites. All advertising is very clearly marked as advertising and distinct from site content.
That said, I have no hand in selling the advertising or collecting payment for it. I never even have any idea to whom the advertising is being sold or what ads will be running. Sometimes, the ads have nothing to do with Migraine. The ads aren't limited to "Big Pharma." Anyone can buy advertising. It just happens that most of the ads are for medications. Whatever the advertising may be it has no impact on what I write or say. There have, in fact, been times when I've written and published some pretty strong warnings and criticisms about something that was being advertised.
Also for the record, it's worth noting that I do quite a bit of work for which I'm not compensated financially, which is fine. Being a patient advocate isn't all about money. It's about helping people and teaching people to advocate for and help themselves. Like most other people, I do need a paying job, so I'm fortunate to be paid for part of my work as an advocate because that allows me to do it full-time. That income allows me to do two things:
- Make the financial contribution necessary to my family.
- Have funds available to do advocacy work for which I'm not compensated. Some of that work includes talking to Congress on behalf of Migraineurs during Headache on the Hill Events, traveling to the DC area to attend recent FDA meetings about their patient-focused drug development program, going to patient conferences such as the Clusterbusters conference and talking to them about advocating for themselves.
Why is this coming up now? This is coming up now because someone (and I'm not going to give that person the attention they seek by mentioning a name here) has been making public accusations that I accept "big pharma" money, "retarding Migraine science and misinforming sufferers." It's time to set the record straight, and that's what I've done here. Now you know.
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© Teri Robert, 2012
Last updated December 19, 2012.