Based on my experience, I would encourage people who value their privacy, who do not want their names and phone numbers given to drug companies without their permission, who do not want to be asked highly invasive, intrusive personal questions about their psoriasis by a stranger over the phone -- including whether or not they have psoriasis on their genitals and if it affects their sex lives -- to run as fast as they can from the National Psoriasis Foundation.
I received a phone call from a stranger out of state who said he was doing a survey. He asked if I have psoriasis, and I asked how he got my name and phone number. He replied “through random calls to people throughout the United States.” I asked who he was with and he said he would reveal that *only* if I completed the survey.
I believed, from the nature of the questions, that the survey was by a pharmaceutical company seeking information to market its psoriatic drugs. I repeatedly asked if this was the case, but the surveyor would only answer that I had to complete the survey to find out who was behind it.
After a while, the questions got intensely personal -- however, I was determined to find out how the caller got my name and phone number and who sponsored the survey, and the only way to do that was by continuing to answer the questions.
I was asked if I have psoriasis on my genitals and to rate it on a scale of 1 to 5. I was asked if the psoriasis on my genitals interfered with my sex life and again -- rate it on a scale of 1 to 5.
The survey took 45 minutes to 1 hour. After it was finally over, I was told that the survey was by Celgene -- a pharmaceutical company. I had never heard of Celgene and asked the surveyor to spell the company's name.
It didn’t take much detective work to discover that Celgene got my name and phone number from the National Psoriasis Foundation (not through random calls to people throughout the US, as I was told by the surveyor).
I called the NPF and was not allowed to talk to anyone, other than the receptionist, and she would not deviate from a prepared script except to say that every year there are angry phone calls from members regarding the survey. That's right, the NPF surveys its members every year and disregards the anger it generates. The prepared script from which she read said the NPF cannot afford to survey its members so it uses another company to do so (never mentioning Celgene by name).
A month ago, I wrote a letter to the president and CEO of the NPF, Randy Beranek, and cc’d Richard Seiden, Chairman of the Board, about my concerns with the NPF/Celgene survey. My letter was polite and thoughtful. Neither responded.
In my opinion, the survey violated this policy because 1.) my name and *phone number* were provided to Celgene by the NPF and 2.) Celgene is decidedly *not* a nonprofit, but instead seeks to make millions, perhaps billions of dollars off my disease.
I am sickened that the organization would, in my opinion violate my membership and trust. Now that my name and phone number and highly personal, intrusive information about my disease (and sex life) has been gathered by the NPF and Celgene and is sitting in their data bases, it can be used in ways in which I have no control. Who is to say it won’t be posted on the Internet? Or that I won’t be harassed with more invasive phone calls from NPF/Celgene?
Frankly, I don’t believe the NPF when it says it couldn’t afford to survey its members, so it used another organization (the never-mentioned drug company Celgene) to do so. NPF is, in my opinion, awash in money. Here is a link of NPF sponsors and donations, including the drug companies that fund the NPF: http://www.psoriasis.org/sponsors/our-sponsors
I worry, too about children targeted in surveys. According to its website, the NPF surveys children and, judging by what I was asked, I wonder if inappropriate questions are directed at them. As with adults, the parents of these children most likely have no control as to how the information gathered is used, along with their childrens' names and phone numbers.
I question NPF citing a lack of funds for farming out the survey to Celgene. According to the BBB’s Give.org., CEO Beranek's salary was $127,128 as of June, 2009. It jumped to $235,080 in June, 2011. Why did he receive a $107,952 raise in two years if the organization can't even fund a survey? Why does the NPF survey members every year? Why aren't the surveys anonymous?
Finally, I would like to ask Mr. Beranek and Mr. Seiden if they have genital psoriasis and whether or not it interferes with their sex lives. And please rate the severity of your genital psoriasis on a scale of 1 to 5 and indicate, using the same scale, how much it impacts your sex life. Since the NPF and Celgene believe they need to know this information of me, I would like Mr. Beranek and Mr. Seiden to be forthcoming, too.
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