What Would an HIV Cure Mean for You?

I think what we will have in five or 10 years is some kind of cure that might allow people to live without daily treatment, for example. So, it's not being cured in the sense that there's no more HIV in their bodies, but that HIV is so well controlled that there's no need to take a pill or pills every day. I can imagine this.

But any other research that is done to eliminate HIV in the body -- it's so far away, and it's so complicated and so cost-intensive and has so many side effects that it's hard to believe it could be something for now.

Wow. I've been HIV positive for 20 years. It would mean the world to me because, for 20 years -- I'm not going to say I've been living in a living hell; I'm going to say I've been living. Because I've been to 46 of the 50 United States and 28 countries, organizing and advocating for people with HIV and AIDS.

I'm a humanitarian. I'll feed you. I'll give you the shirt off my back. That's why I came down to this conference -- to get more information on new medications, new treatment. How close are we to a cure? I want to be cured before I close my eyes. That's how much it means to me.

The Elizabeth Taylor AIDS Foundation focuses on prevention, support, care, awareness, advocacy. Even if there were a cure today, there would still be the utmost urgency and necessity to implement that, to make sure that everybody has access to that and to create an infrastructure of support around it all.

The HIV cure, that's very important. That's very important to the world. To all countries it's necessary.

But for me, the cure is being part of the last 90 in 90-90-90 [the goal that 90% of HIV positive people will know their status, 90% of those people will be on antiretrovirals (ART) and 90% will be virally suppressed by 2020]. I have a sisterhood of transgender women and young sisters of transgender women. So I understand the real situation. The cure right now is more treatment for people living with HIV. That's very necessary.

We have actually talked a lot about it in our group because we are connected to the hospital quite strongly. So we have talked with researchers about those people who have already been cured because they had leukemia followed by a transplantation.

The way it is right now, I take one pill a day, and it's not a big problem. So it depends what the cure will look like. If I have to go through a whole year where I will suffer to get cured, then it's not worth it for me. But of course, I would love getting cured.

I also strongly believe -- I'm only 27 -- that when I die I will not have HIV anymore. I'm pretty sure.

A cure will be a very big relief for women. A big, heavy load will have been removed from their shoulders, given that our women are burdened; they're burdened with HIV. And now we have a new low, which is that we expect a woman who has tested and found herself positive to disclose to her husband. She has to disclose, she's expected to disclose it.

Even the law is a burden on the shoulder of an HIV-positive person. So when we get a cure, I think that will be support for our positive people living in Uganda. First of all, we'd have been unchained from our law that criminalizes intentional transmission and attempted transmission and, again, requires medical personnel to disclose my HIV status to the people that I am always in close contact with, whether I've consented or not, which I feel is a violation of my privacy and my rights as a human being.

My status of being HIV positive does not stop me from being a human being -- I should be able to enjoy my rights and the UN declaration of human rights just like any other human being.

For me, personally, I've been HIV positive going on 26 years now. So I have never imagined being cured. I've imagined a longer life. But I would love -- obviously, I would love it for all those people. Less for me, personally, because I have access to medication. I have a great life. I have support. But I think about the people around the world who aren't even on antiretroviral therapy [ART]. If we could cure those people so their lives would be as long as I know mine can be, to me that would be the best thing.

The nice thing about Elizabeth Taylor AIDS Foundation and a lot of organizations is -- and I went to school for this; I went to Indiana School of Public and Environment Affairs -- the goal is to put ourselves out of business when you do this kind of work. You don't want to have to always be doing this. You want to have an end goal.

There is an end goal for HIV/AIDS. And Elizabeth Taylor, in her wisdom, actually laid out in her trust documents what happens next, which we can't disclose yet. I don't even know them fully, but she has a plan for where this Foundation goes. I do know it will be around access to health care, still -- like what we do in Malawi where we're providing mobile medical clinics to get to the hardest hit areas, the hot spots that are so far off the grid that there's no infrastructure.

You know, to me [an HIV cure] is really the sense of not having to deal with the stigma. And I don't know that the two will always happen, one after the other. If we get the biological intervention, then stigma will be reduced. But to me, having people not carry this burden is really what it's about.

But I think as far as a definition, I think the first step is really permission. It's thinking about -- just getting to a place where you don't have to be on treatment, and you are not going to transmit the virus, is huge. It's something we have to keep working towards.

First of all, it would reduce the disease burden, in the sense that we wouldn't have many people who have to occupy hospital beds. The other thing: It will reduce the burden of taking care of orphans. As much as ART has been there for quite a long time, we still have people who are not taking ART. And then at the end of the day we are left with orphans. So there is a lot of suffering, whether emotionally, spiritually or psychologically. So there are people who may not even be in a position to take care of these orphans. And not just that, sometimes we even have children in the street.

An HIV cure would be -- I mean, I can't even define it. It's just amazing. And that is what we are looking for. I work in an organization that is looking for an HIV vaccine. And I'm very enthusiastic to bring people to understand the role that they have in helping us realize an HIV vaccine. It would be just amazing because that would mean that more people would be protected. More people would live longer.

Gcina: People would be free, so many people. There are obviously so many other viruses, and I'm not saying it would be a matter of ... everyone's going to be loose. But it's a matter of expression, you know? Like a physical expression with a good partner.

It would also mean less debt, less people lost. Losing people means losing knowledge, losing talent. So we're just going to accumulate and be a greater species, I guess.

Ndalo: I think, with a cure, you also have a bad side, because people will just do whatever, because they know they can always cure it. So it could actually affect in another way.

What about you? What would an HIV cure mean for you in your life, community or work? Share with us in the comments!

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