The announcement on social media appeared everywhere all at once in late December, from Instagram to Facebook to X.
“CASTING: People Living with HIV,” it trumpeted. After brief demographic requirements (no one past their 60s need apply), things got down to business. “If selected for the final project,” the ad informed us, “you will be paid $750 for a 1-day shoot plus $5,000 for usage for 3 years and featured in a digital video and/or print ad featuring real people living with HIV.”
That was it in terms of details, beyond a link to apply and an email for further questions. I had further questions.
Who was behind the project in question? What was the nature of the project – was it a public health campaign, an anti-social stigma message, or a pharma ad?
I tried to set aside, as best I could anyway, the low-ball payment being offered and the fact it was below SAG union scale – even though people living with HIV were being asked to disclose private, and sometimes outright dangerous, medical information about themselves. Okay, maybe I couldn’t set it aside entirely. I have written before about how people living with HIV are often devalued, a narrative that feeds into our shame and our sometimes troubling sense of self-worth.
First, I looked up the company doing the casting. GENUINE prides itself on casting “real people!” for ad campaigns, primarily for pharma. I know people who have been cast by them and they were treated respectfully. Still, the absence of the nature of the campaign in their outreach was irksome, like they were holding a shoe they weren’t willing to drop. Not yet.
I took to my keyboard and reached out to the email provided for questions. I said, in part:
When dealing with people living with HIV, who have a long history of harm and exploitation — most particularly due to the policies of the pharma industry and the monumental costs of life-sustaining medication — it would be best for you to practice “genuine compassion and thoughtful preparation,” as your website promises. Tell us the nature of the project first (“We are searching for people living with HIV for a pharmaceutical ad/anti-stigma campaign/public health message”).
Instead, your social media ad mentions only how much money participants might earn. What a cynical and troubling approach to gain our involvement. While you will get responses, certainly, from people living with HIV who could desperately use the cash, the blind nature of your outreach does nothing to mitigate our actual needs. It only exploits them.
A few days later, I received a response from GENUINE team member Franchesca Agramonte, who assured me that “The goal of the project is to humanize people living with HIV and challenge persistent misconceptions. Participants are not asked to endorse a specific medication or share anything they are not fully comfortable sharing. The inclusion of payment information is for transparency, but I understand how it could be read that way…”
Franchesca went on, presumably in hopes that I would run along and be a good little person with HIV, by wrapping up her email with, “If this project is not of interest to you, we completely understand. I do want to assure you that exploitation is not our intention, nor our practice.”
Well, you know what they say about good intentions. And yet, still, no transparency about the client for whom participants would be working. I tried again.
I responded to Franchesca saying she hadn’t answered my question about the nature of the campaign. “I’m not asking you to identify your client,” I wrote. “I am asking what the project is, not the (rather vague) goal of the project you mentioned. And this is why there is inherent distrust between people living with HIV and those who would use us as window dressing.”
More than a week passed. Nothing. I wrote again with the same questions. Finally, Franchesca responded with this:
Hi Mark!
This job is for an HIV lifestyle shoot. At this stage in the casting, the client is not being shared. Anyone moving forward with the project will be aware of the brand name. If you are interested in being considered, feel free to submit asap!
No girl, I am not interested. I’m trying to get information from you, and this teeth-pulling to get answers rivals my wisdom tooth extraction.
I answered Franchesca saying I was giving her one more shot at any sort of transparency, and then found the name of GENUINE’s founder, Jill Strickman, and wrote to her as well, outlining my concerns. In both those emails I shared a link to my Facebook post about this sketchy casting notice and the many comments from people living with HIV who were likewise skeptical.
I got a response back from Jennifer Kitchin, an executive producer at GENUINE. Founder Jill Strickman must have been busy scrounging up diabetics or whatnot, but at least Jennifer was higher up the food chain.
After paragraphs devoted to the GENUINE mission statement, Jennifer offered this morsel:
You are correct that our initial online outreach is not specific as to the nature of the project. Social posts draw a lot of scrutiny, as is modeled here, and we want to be mindful of details that may trigger heated online conversations and, therefore, keep our forward facing outreach broad. We prefer to answer questions and address concerns on an individual basis. To that end, we thank you for reaching out to Franchesca with your concerns. We are currently in discussions with our client for approval on more detailed language to explain the nature of the project (bold mine) and will share that with you, once it is received.
First, some applause, please, for actual movement from the folks at GENUINE for discussing all this with their client. I responded by praising their willingness to move the ball on this, but I also couldn’t resist pointing out the obvious in my response.
“If by revealing your client to be a pharmaceutical, your outreach draws ‘scrutiny and heated discussion,’ as it already has, then so be it,” I wrote. “That’s the wagon to which you have hitched yourselves.”
And then, a few days later, this email from Jennifer Kitchin:
Thanks again for sharing your valuable feedback on GENUINE’s social media recruiting post.
Both our team and our client are grateful for the opportunity to hear directly from the HIV community. Based on your input, we will revise our posts to state that the project is part of a pharmaceutical health and wellness program. This should be completed by Monday.
We appreciate your advocacy and the time you took to guide us.
That next Monday, as promised, Jennifer sent this:
Hello Mark,
We just wanted to let you know that our outreach materials have been updated across all channels. Here is a link to the revised Facebook posting:
Revised casting announcement stating the project “is part of a pharmaceutical health and wellness program.”
And there you have it. As I mentioned several times in my exchanges with GENUINE, there are people lucky enough not to risk social stigma or violence by revealing their HIV status in a national campaign. One of those people might be you. You have my support and well wishes.
Now can we do something about the criminally low amount Big Pharma is willing to pay for our stories and likenesses?
Mark
p.s. You can read every word of my emails with GENUINE right here. I’m all about transparency.
