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People Living with HIV Lend Our Expertise for Free. Let’s Stop It. 

by | Apr 8, 2022 | Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 0 comments


There’s a new survey produced by the Prevention Access Campaign (PAC) that addresses an important issue: people living with HIV being undervalued for their contributions. And too often, it is those of us living with HIV who let it happen.

Speaking at an event. Serving on a panel. Doing a workshop. Signing a fundraising letter. Appearing in a pharmaceutical or government campaign. 

Way too often, we say yes because we are flattered to be asked, or we believe passionately in HIV awareness so we don’t think to ask for payment, or we fear it is presumptuous to ask for money for our time and lived experience, or the project is for a non-profit organization and we don’t think they can afford to pay us.

All of these reasons are well-meaning and display a lovely generosity of spirit. None of these reasons warrant denying our worth as valuable resources.

I have been guilty of this for most of the 35 years I have worked in this arena and volunteered and given presentations. I used all the reasons listed above at one time or another. I thought I was being generous.

The question is, generous to whom? When I deny payment for my time and expertise, I am actually lowering the customary value of all people living with HIV. I am making it harder for the next person to be paid. I have prioritized the wants of a group or company or organization over the value of people living with HIV.

Sure, it feels uncomfortable. I have begun asking “what is the payment for this project?” as part of asking about the time and date and other details. Like any good negotiator, I suggest you ask the question and sit silently without jumping in to offer to do it for nothing. There should be a budget line item for us. We must begin conditioning groups to include it. 

It is true that some of us might be on some kind of fixed disability income that doesn’t allow us to earn money on the books. Fair enough. Ask what the payment is anyway, and then ask them to donate that amount to your favorite non-profit organization.

The survey Prevention Access Campaign is conducting should help them get a picture of how often people are asked to do things for nothing, or if and when we have received payment and for how much. The survey results should help them craft a policy or at least continue a conversation among our community about how best to know our worth and ask for it.

You can access the survey here, and a Spanish language version is available here.

You’re worth it.


P.s. As a thank you, PAC will be providing a $20 USD gift card to those who fully complete the survey. Once the survey is completed and the confirmation page appears, please click the link to an optional form to fill out should you be interested. You will need to provide personal information to receive the gift card but that information will not be tied to your survey responses.


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