A national speaker, trainer, advocate, and executive director of the Positive Women's Network-USA, Naina Khanna has worked in the HIV field since 2005, following her HIV diagnosis in 2002. She currently serves on the Board of Trustees for AIDS United and the National Steering Committee for the US People Living with HIV Caucus, is a member of the Women's HIV Research Initiative, and served on President Obama's Advisory Council on HIV/AIDS (PACHA) from 2010-2014.
Naina recently collaborated with AIDS United to help create new tool on Meaningful Involvement of People Living With HIV/AIDS (MIPA). We caught up with Naina to learn more about MIPA, ways that organizations can better embody the MIPA principals, and her motivations for social justice work.
Tell me a bit about yourself and how you got involved in this work?
I come to this work as a woman living with HIV. I was diagnosed in 2002 and through the course of my diagnosis and starting to try to access services, I realized that systems were not well set up for women and people of color living with HIV and that we weren't well reflected in leadership and decision making around how policies and programs get designed. As I started to become more active in HIV spaces, it became clear to me that some of my personal experiences were not unique. In fact, the inequities and disparities were widespread in the US around quality of services and representation in political and decision-making processes.
Positive Women's Network - USA (PWN-USA) was founded in 2008 in response to that, to build power among women living with HIV in the US, especially women in communities most affected by the epidemic. The US People Living with HIV Caucus was founded a couple of years later to be an organized political voice for people living with HIV across the country. The Caucus is a network of networks and individual advocates, a diverse array of voices, all people living with HIV thinking about how systems can be better designed and more accountable to the needs of people living with HIV.
Why is MIPA more critical now than before?
MIPA is more important now than ever in part because the folks who are being targeted by this administration and Congress, who are largely viewed as disposable, are the same people who are most vulnerable to acquiring HIV and to having poor health outcomes once diagnosed. So, building power and true representation that is accountable to the communities most affected by the epidemic is more urgent now than it's ever been.
The HIV movement has been at the forefront of many fights over the years, from reconfiguring treatment access through clinical trials and getting medications to people faster, to completely reconstructing how decisions about funding get made through the use of planning councils that require the participation of people living with HIV. In this moment where the HIV community and a lot of communities that we are a part of are under attack, we have a lot to offer to other movements fighting for social justice and representation.
Also, when you look at the landscape even within the context of HIV, we don't see that many of the organizations and institutions providing services to people living with HIV are truly reflective of communities they serve -- especially at highest level of decision making. As increased funding pressures have created an environment where small organizations -- especially those run by and for communities of color -- are falling off the map or being consolidated or acquired by other, larger entities, we're seeing less capacity for truly culturally-informed solutions around HIV and the issues that it intersects with like health justice, mental health, and economic justice. These large institutions haven't necessarily learned how to work in real collaboration and partnership with community. I think that's part of what a framework of meaningful involvement of people living with HIV can help organizations to understand.
MIPA is about so much more than HIV status alone. Can you talk to me about the importance of intersectionality for MIPA to truly be embodied?
Traditionally a lot of people have thought that it's enough to have a person living with HIV at the table -- and, by the way it's the same person who's been sitting there for 20 years nobody new has come. This happens across the spectrum on boards of directors, planning councils, and advisory boards for clinical trials. The problem with this is that the epidemic has changed. It has transformed in last 30-plus years to an epidemic characterized by severe racial, gender, gender identity, and other forms of disparities.
It doesn't mean anything to say a person living with HIV signed off on protocol or reviewed it. It's important that we have folks at the table who are reflective of the constituencies most affected: black and brown folks, young gay and bisexual men of color, trans folks and gender non-conforming folks, and younger and aging women. It is important that we have communities that are much less likely to be represented in those kinds of spaces in these processes. And it's critical that while they're there, they are able to participate effectively.
What are some ways that an organization or entity be more accessible for people living with HIV to be meaningfully involved?
MIPA is not just inviting somebody to come to a meeting and vote. It's also making sure you reduce all barriers to their participation. Are the meetings scheduled at a time people can get to? This culture of expecting people living with HIV to be perma-volunteers is predicated on a time when everybody assumed that we were just sitting around waiting to die and not working. That's just not true anymore. Folks always should have been valued and compensated for their time. That's more urgent than ever today, when people living with HIV have to survive in a really rough economy. This may mean working multiple jobs, taking care of kids and grandkids, and lots of other things.
Providing opportunities for people to participate in ways that are technologically and economically sustainable, that value their expertise and lived experience, and brings them into the space in new ways beyond expecting them to vote on something you've already decided on is crucial. True meaningful involvement requires getting people living with HIV the documents early, making sure they understand the decisions that are going to be made before they come, and finding different ways to disseminate through technology.
Talk to me about how compensating and valuing the time and lived-experience of people living with HIV is critical to MIPA.
Explicitly around involvement of people living with HIV, one thing we always say is your budget shows your priorities. Look at your budget and see exactly what you're allocating to whom. How are people being compensated or valued for their time? Are people living with HIV just the people who receive stipends or lunch? If you are running a program that is ostensibly for black gay men living with HIV, to what extent are black gay men living with HIV in the project being paid? Is that who is staffing, designing, or running the program?
For example, when you are putting together a grant proposal, think about how your proposed budget actually reflects what the funder might be asking you to do around MIPA. So, if a funder is saying that they want to see how people living with HIV or black gay men or women of trans experience are involved in this project design, they are giving you important information. Think about how your budget reflects that set of priorities. Really think about the link between budget line items and values that you are purporting to espouse.
How can an organization incorporate MIPA into their hiring practices?
Look at your organization's leadership structure and look at your constituency base. Ask yourself, how closely do they match? So, if your constituency base is all people living with HIV, mostly people of color, mostly low-income folks, and your leadership and management doesn't look anything like that, then you might need to think differently about what your hiring practices are, what you are prioritizing in your hiring, and how to build capacity across your organization.
It is also important for institutions to look at demographics of staff overall. In a lot of organizations, we see that frontline providers do represent the community that's being served relatively well, because they can work well with the community they're serving. But, as you go further up, the institution becomes less reflective of the constituency being served -- this is what we call a snowcap organization. Think about your hiring practices, organizational protocols, the professional development opportunities and career advancement opportunities within the organization that could (and should) be shifted. Even little things, like if you are hiring, do you post it where your constituents and their networks will see, like in the waiting room or in a support group? Or are you posting it on a website that they will never see?
Also, I encourage organizations to consider if they even have protocol for expectations about involvement of people living with HIV, people of color, people who are not cis heteronormative, to be involved in decision-making processes. Does your organization have any sort of mandate around representation on the board? Do you have any protocols about how new programs get designed? One really good practice I've seen is that organizations thinking about developing a new program consult with the affected community and compensate them for that time, before developing the actual program. And then once it's up and running, they make sure that someone is hired who actually has the expertise -- including lived expertise -- to run the program.
How do you stay motivated in this work?
Working with such a fierce, badass crew of advocates living with HIV around the country. It's the people I work with who keep me going and inspired.
Also, I think it's really important not to have a martyr culture around the work we do. What keeps me motivated is also my yoga practice, taking breaks, and being outside in the sunshine.
New Resource: Meaningful Involvement of People Living with HIV/AIDS (MIPA)
This new resource from AIDS United and The US People Living with HIV Caucus shares best practices to incorporate MIPA into your organization, including how MIPA benefits CBOs, tools to assess MIPA at your organization, and mechanisms for greater involvement of people living with HIV.
This work takes time but the investment in MIPA is critical, doable, and well worth the effort. Download the resource here!
New Funding Opportunity: Positive Organizing Project
The goal of the Positive Organizing Project is to increase grassroots mobilization and engagement among people living with HIV within service delivery systems to directly impact stigma, improve the policy and community environment for inclusive and effective HIV programs, and indirectly improve outcomes along the continuum of care. Learn more and apply today!
Sarah Hashmall is communications manager at AIDS United.