Translator: liliane Bea Matongo Reviewer: Queenie Lee
17 years ago, I went to Florida to swim with the dolphins
with my mom and my little sister.
We were standing on the dock, watching the dolphins do their thing,
and I looked down, and I noticed this bump on my leg where it met my body.
I showed it to my sister and my mom,
and they didn't think it was anything too serious,
and I went home and showed it to my doctor, neither did he.
He gave me some regular blood test and said,
"Come back in a week,
and we'll see what this is and get it cleared up."
I got a phone call a couple days later,
and he said, "Your blood work is inconclusive and shows something.
We want you to come back in."
So I sat in an exam room for a while
until they brought me to his private quarters, which was strange,
but they said, "We're just overstretched with people today;
we need you to be in his room."
And then the door banged open and five people in lab coats walked in.
The first thing I thought was,
"Oh my God, this is so serious that my doctors brought in backup."
And the second thing I thought was,
"What, in God's name, did the dolphins give me?"
I mean, I had been kissing them,
and I was to get some weird tropical disease from the dolphins.
He said, "I don't really don't know how to say this,
so I'll just tell you that you're living with HIV."
My mind just exploded. I'd been so careful.
I really thought I had known what I was doing with my body over the years.
I'd been careful, but obviously not careful enough.
I'd had unprotected sex and contracted HIV.
So I asked him how long I had to live. It was 17 years ago.
He said, "About a year, maybe two." I said, "May I have a baby?"
He said, "Probably not a good idea."
We now know that you can have a baby, as a woman with HIV,
and not pass the virus on to the baby.
And then I said, "Can I have sex?"
Because if I would die, I don't have a baby, leave nothing behind,
I could at least maybe have some sex and enjoy myself before I died.
But he said, "Also, probably not a good idea."
Fortunately, it was okay - I got a second opinion on that.
(Laughter)
But I didn't know what to do. And neither did he.
He was a GP, and this still happens today,
where people get diagnosed by someone who is not aware of HIV
and doesn't really know how to talk to their patients about it.
Luckily, he gave me a prescription for Xanax
and the number of the Gay Men's Health Crisis.
I filled the prescription,
which was disappointingly but wisely only a couple of pills,
and called the Gay Men's Health Crisis.
And I said, "I'm not gay. I'm not a man, but I'm totally in crisis."
This young man on the phone talked to me for about an hour and a half
and, over the days since my diagnosis throughout a week,
really held me together, and so I made it through the first week.
I didn't tell anyone for a long time;
told the person I had recently been with;
he was tested and positive.
Then I went back through my history.
You can imagine some unpleasant phone calls,
but luckily no one else was positive.
So we isolated the person and he was cared for.
But, you know,
I survived that first week with the idea that I would be medically okay,
but even from those first days, I thought, this is not a disease,
emotionally, that anyone is really prepared to take on.
And I didn't tell anyone for three months.
I just could not do it.
I could not bring myself to say the words to my parents.
But eventually, the secret was eating me alive.
So I told my mother, who was wonderful and gracious.
I told my father, who was awesome.
And then my mother told my little sister.
And my little sister - on the right.
And I met her at the train station.
We were best friends.
And I could see - how she came off the train down the platform -
that she had already been told.
I could see it on her face.
And she said to me, as soon as we were close,
"We'll kick this thing's ass. You'll survive this."
And we went into Burger King -
we always did at the train station - and we made our lake of ketchup,
we used to mix ketchup and barbecue sauce and share that together between us.
And she didn't not share my ketchup,
she double-dipped her fries in my ketchup.
And that was the first moment I felt like I was going to maybe be okay
because she was not treating me like a leper.
And to not be treated like a leper,
and to have three of the most important people in my life
say it was okay that I had this disease - not great, but they would stand by me -
was critical.
So I was medically okay, and the drugs really do work.
It was - at the time when new drugs were just being released,
we weren't really sure what the long-term side effects would be.
We didn't really know whether they would work long term.
We now know that treatment doubles its prevention
in people who adhere to the drugs properly,
and your viral load can be completely suppressed
so that, actually, you're not infectious.
I mean, you are technically still living with HIV,
you do need to take precautions,
but it's like being on antibiotics when you have a flu.
People around you feel a little bit safer
and in fact, you have reduced the risk of the spread of HIV.
So, I was medically okay but not emotionally.
And the stigma was crushing.
And I thought, "Well, how can I -
I don't want to put this level of shame on myself.
And I don't want to wear the shame that some in society would have me wear.
So, how can I change my mind? How can I see this differently?"
I started with the fact that - what had I done?
So I'd had unprotected sex,
which is something, literally, that all of our mothers did, right?
So, I mean, somewhere along the line, I don't know -
Just keep going forward. Oh! this is me. Hold on. There!
Somewhere along the line, everyone's mother had unprotected sex.
So if I did something truly terrible, then everyone's mom was in the same boat.
The other thing I realized was that HIV really is just a virus.
It's a beautiful, beautiful virus in terms of how it works.
I went to my doctor and asked him to show it to me.
I said, I want to know
what this uninvited house guest looks like in my home.
And I came to appreciate its beauty
and understand it was just trying to live, like I am.
It was just doing what all living creatures do.
But more importantly,
it was a virus, nothing more, nothing less.
I'd had unprotected sex, and a virus happened to be present;
someone else had unprotected sex and a virus didn't happen to be present.
That doesn't make me a terrible person, it makes me a biologically unlucky one.
And that's an important distinction.
And then I thought about, well, what if we didn't get HIV sexually?
What if you could, like, inhale it,
and just sniff it in, and you could get HIV?
Would it be different?
Yes, because we associate HIV with sex and sexuality,
which for some people is an uncomfortable topic.
In a world where we're often driven by sex,
thinking about sex is all around us;
we still haven't gotten that comfortable talking about sex.
And so I think it's the association with sex and sexuality
that makes people uncomfortable about HIV.
When I talk to school children,
I often say, you know, this is a disease of my immune system.
Sexual transmission is one way you can get HIV,
but it's not the only way,
and it's really my immune system that is not well.
The virus borrows the cells of my immune system,
destroys them in the process of its replication
at a rate faster than the body can reproduce those immune system cells
so that your immune system eventually becomes unhealthy.
And so you die then of things that you wouldn't ordinarily die of:
pneumonia, opportunistic infections.
If you can keep your immune system strong, which the medications do,
you're perfectly healthy and normal, and you have a very strong immune system.
So, it's just a virus, it's got a medical solution.
We have tools that can really keep people alive with HIV,
but there is this thing called stigma that is just devastating.
When someone gets cancer, they get flowers.
When someone has breast cancer, they have a whole support system.
But for HIV, it's different.
You can get stigmatized, ostracized, discriminated against,
criminalized, even killed in some countries and some places.
So after ten years of not dying,
but living in silence and not telling even a single friend,
because I was so afraid of the shame that I might feel,
I decided to work as a journalist behind the scenes.
I worked for a magazine called POZ, anonymously.
Eventually, I decided that -
I'll come back to that.
This motto, silence = death, this is a piece of art from Grand Fury,
which was the clarion call of ACT UP in New York, in the early days,
remains true.
If we don't talk about this,
if we don't tell people how not to get it,
if we don't tell people that the drugs can save your life,
they will continue to die,
they will continue to get the disease unnecessarily.
So finally, I found the courage to come forward
and actually come out from being anonymous.
And I was on the cover of POZ magazine and became its editor.
And then I've worked since that time
and now have the good fortune to work at UNAIDS,
a UN agency focused on ending AIDS worldwide.
So I came forward and did my own brand of speaking up.
What has happened to me in terms of my own personal health
is that I now am no longer harboring that shame.
And the people around me who I meet,
who are in the same position and who haven't spoken out,
it just takes one person.
For me, it was the people who I saw, who came before me
that helped me.
And it was, in my case,
a group of young gay men in a support group.
There were no support groups for straight women.
So I just said, can I glom on, etc.
I wasn't comfortable talking about sex.
And this group of gay men made me very comfortable talking about sex,
my body, and everything that happened to it.
And also the agency that I could have with what would happen to my body.
You know, that's something we don't teach people,
and we certainly don't teach children.
Sex is something that we all are going to have, eventually,
I know that it makes people uncomfortable to talk about young children having sex,
but why not arm them with information before the fact.
Why not tell them what they can do to do this well and do this safely?
We don't put kids in cars and, say,
not teach them where the brakes are or the seat belt
or the turn signal, and say good luck with that.
We teach them how to drive a car.
So if we can teach them about their bodies, how they work,
and how to put themselves and keep themselves in positive situations,
that would be great.
In fact, I was probably, I am guessing, probably five years ago,
I had my first really good sex-ED class in that building.
That's the White House for those of you - It sounds a little weird.
Not in the white house, but we had a meeting about women and HIV
associated with a White House event.
And it was at that meeting, for the first time, when I saw an OB/GYN,
stand up in a group of 150 powerful women,
Congresswomen, diplomats, very very intelligent people,
and say, "Okay, who in this room
knows the angle of a woman's vagina when she is standing at the vertical?"
And we're all, like, I don't know
and, like, leaning back and forth trying to figure it out.
And she finally said, 45 degrees to the vertical on the back.
But I thought, here it is - one of the most important,
one of the most central issues in people's lives,
and we haven't found a way to become comfortable talking about it.
Then we don't talk about HIV because it is linked to it.
So I don't know if the solution is
making everyone comfortable about sex or talking about sex,
but it's a good place to start.
And I have, in the work that I've done,
come to realize that almost anyone can talk about sex comfortably
if they just are given license to, and they practice it a bit.
My mom and I had never talked about sex until I got HIV.
And I would sit in the doctor's office just with her and think,
"Here's a woman who had sex and had me,
and knows that I have had sex, but we'd never had these conversations."
The fact that we've been able to talk about these things
has brought us so much closer together.
So I'm hopeful that if my mom and I can have easy conversations about sex now,
that anybody can have comfortable conversations about sex.
I think that where we are in the world right now with HIV and AIDS
is that we have a solution that is the easiest one we've ever faced.
We have an opportunity before us that's remarkable.
We have two-thirds of the people in the world not on treatment.
But we have the treatment that works.
We have prevention that works,
we have political will,
we still have a great deal of capital being applied.
We're further along in the science that we ever have been
on the cure and vaccine fronts.
We're talking literally about ending this epidemic in our lifetime.
It will not be easy, it will not be cheap,
it will not be overnight, there is no silver bullet,
but the one thing that will help us do that
and allow us to apply the tools that we have
in a very broad and even-handed a way
is to take the hysteria out of this topic.
You know, when you think about it,
everybody deserves access to health care,
everybody deserves a shot at surviving
some viral infection that comes into their body.
And when you look at what happened with breast cancer
back in the early days,
they couldn't even talk about the First Lady's breast cancer
when Betty Ford announced she had it, because they couldn't say "breast"
and they couldn't say "cancer" on the evening news.
And the reporters were, like, how we are going to talk about this story?
So I think, now you can get on an airplane in October
and you can have a half-priced pink margarita
because we're going to give money for breast cancer and celebrate it.
We've come so far.
I don't see why we cannot come to the place in the world
where we can be on an airplane
and get a half-priced Bloody Mary for AIDS.
I mean, I just feel like we can get there.
And while all it takes is opening up our minds,
rethinking the way that we've thought about this,
and realizing that people who are living with HIV, like myself,
are not bad people,
but they're pretty good people with a really bad disease.
And that we will do better,
we will do much better in our personal health
and therefore public health,
because when we're on medication,
we're less infectious, we will improve.
And all we need is the support of people like you all around the world
who just rethink why we think HIV is so terrible,
and have the courage to talk about it with your friends,
with your family members, with your kids, with each other,
and take the hysteria out of it.
And that is the path to the end of AIDS.
And I am grateful for all the people who came before me
who had the courage to speak about this.
It still takes the spit from my mouth
when I think about coming to a group of people
and having to say I have HIV.
But I do it so that someone else doesn't have to sit in a doctor's office, someday,
and have that door bang open
and have five people in a lab coat walk in
and say, "I have something to tell you, you have HIV.
You're going to die of AIDS."
That doesn't have to happen.
And speaking about it is the key to ending it.
So, thank you very much.
(Applause)