Transcriber: Leonardo Silva Reviewer: Mile Živković
So, let me tell you a story.
It's not a fiction as much as you and I may sometimes hope it to be,
but HIV is a story that affects 33.4 million people around the world.
33.4 million people are HIV positive.
In BC, with a population of 4.5 million people,
13,000 of us are HIV positive.
There are about 300 people here today,
and in BC, one in every 303 people is HIV positive.
I don't mean to stress that the virus is so prevalent,
or that we should all start to panic or be very concerned,
but I just mean to stress the impact that HIV has on the human population.
And we can't simply think that we can just gloss over the statistics,
and that we can just hear about it on the world report
during the evening news broadcast.
But no, HIV affects people we know.
It could be your neighbors. It could be the person sitting right beside you.
It could be me.
I work with the STOP HIV/AIDS Project,
which stands for "Seek and Treat for Optimal Prevention of HIV/AIDS."
And it's a three-year pilot program here in BC,
dedicated to providing access to medicines in vulnerable populations
in the Downtown Eastside and in Prince George.
I have a really neat job where I get to be responsible
for the education outreach surrounding rapid HIV testing clinics
right here at UBC.
And we had our first one just last week, the rapid-testing clinic. (Laughter)
And the response was tremendous.
We had students who came up to testing and students who talked to us,
and it was just so inspiring to get so much good discussion going on,
about why talking about HIV is so important.
But before I get into that, I'm going to go back to the introduction,
and to how HIV started,
because in 1981, a virus was first discovered
and two scientists, Robert Gallo and Luc Montagnier,
both published in the same issue of Science
that they had discovered a new retrovirus that was prevalent
amongst the gay male community.
Now, 1981. That's only thirty years ago.
And in these meager thirty years, HIV has really risen
to the forefront of public health.
And we hear about AIDS a lot.
As a science student - I'm studying physiology -
I learn a lot about it in my microbiology classes.
And I learned that HIV is a virus that lives within our own cells,
and it turns our immune systems against us.
And what it does is that it spreads and replicates
until we're somehow defeated almost, and then we get AIDS,
and that makes us susceptible to other illnesses.
But AIDS does not equal death, and HIV does not equal death.
When I first started my outreach training, one of the first things we learned about
was the importance of language.
You may have noticed that already in how I speak,
but I'm very careful in how I talk about HIV,
because when language developed, it developed along the lines of:
"Well, HIV is really unfortunate, but I don't have it."
And that's why we might be used to saying things
like "those people who have HIV,"
as if somehow suggesting that the fact that we may have this disease
somehow makes us subhuman or different.
And I don't believe in this othering.
I feel like it's primitive to separate people this way.
And instead, when I talk about HIV,
I like to express it as "those of us who are HIV positive,"
because each and every one of us has an HIV status.
And the story of HIV is a collaborative one.
We sometimes think that it's only about the narratives
of those who live with HIV.
But no, each and every one of us contributes to this overall story,
and how we talk about HIV, and how we react to HIV.
And it's not just those living with HIV.
But did you notice how I said that?
Once again, the language defines how we think about HIV.
"Living with HIV." "Living with AIDS."
We say things like, "She has the flu," or, "He has allergies,"
but with AIDS, it's almost as if you're living, ball and chain,
to this virus that's with you for the rest of your life.
And I don't think that's fair.
Let's talk about diabetes.
Diabetes is an illness. There is no cure for diabetes.
Diabetics constantly monitor their blood sugar levels.
Yet, I would say that there's a lot less stigma
associated with going to the drugstore and buying our blood sugar monitors
than there is being seen taking our daily antiretroviral medications.
And what causes this difference in how we perceive
these two very similar illnesses?
I've been doing outreach at UBC for about 6 months now,
and I get asked some common questions here by UBC students,
some of the smartest young people in the world.
But they will ask me questions like, "Can I get HIV from toilet seats?"
Or: "I don't need to get tested. I'm not gay."
Or they will say things like: "Oh, I'm not promiscuous, I don't need to use a condom.
I don't need to get tested. Everything's going to be OK."
And I understand that sometimes it's hard to talk about sensitive issues,
like HIV, like sex.
And I don't mean to insinuate that UBC students
are not as smart as this establishment repeatedly proves,
but that, instead, these are some of the many misconceptions
that surround HIV.
It's really important to identify them and to move past them,
because no, you cannot get HIV from a toilet seat,
or holding hands, or kissing, or even breathing the same air as somebody else.
And no, HIV is absolutely not just a gay problem.
And no, HIV has no specific symptoms.
So, the only way to know for sure is to get an HIV test.
And yes, if you are sexually active,
you should be getting a regular HIV test yearly, or more often.
But one of the most common questions I get asked, and often not directly,
is about what it's like to live with HIV.
And people are terrified of this thought, they're terrified about that idea
that, one day, they're going to walk into a clinic,
and sitting across from them will be a nurse, a clinician, a doctor,
somebody that tells them that they are preliminarily positive for HIV.
Can you imagine what it would be like in that moment?
All these thoughts must be racing through your head:
"What does this mean? What do I do?
Can I tell my parents? Can I tell my friends? Should I tell them?
Am I going to die?"
And you know what, those are the questions that I don't have the answers to,
but what I can do is go a bit deeper into this story.
I have a friend. Let's call him Steve. And Steve is HIV positive.
And I asked him once about that moment, sitting in that empty room,
and finding out that he was HIV positive.
And I asked him, "What did you think?"
And Steve said: "It was the scariest moment of my life."
And if you knew Steve and how seriously he takes his words,
you would really feel the force of them.
But he continued, and he explained, and he said:
"I was terrified. At that one moment, I didn't know what to think.
I felt like I was two separate people:
one person, a dead person;
and one person was alive, but struggling.
And all I could think about as this nurse was talking to me was:
'How do I tell my parents? How do I tell my friends? How do I tell my partner?'"
But Steve did tell his parents, and he did tell his friends,
and he did tell his partner.
And now, he tells others about how he lives as an HIV-positive individual,
but he lives a full and healthy life,
and he explains how he's gone so far past that initial moment,
infused with all of these misconceptions and all of these fears.
And he explains that that moment wasn't life-changing for him.
What was life-changing for him was when Steve finally married his partner.
So, we're so used to this idea of HIV
being this terrible, all-encompassing disease.
But I'm going to argue that while HIV is life-changing, it is not life-defining.
HIV is a chronic, manageable illness.
And, can we just say that all together, for full effect? (Laughter)
Yeah, let's do it!
Everybody in the room: HIV is a chronic, manageable illness.
Paige Zhang: And wow, that is so refreshing to hear,
because sometimes we hear the opposite,
and it has a really damaging effect not only for those who live with HIV,
but for all of us; it prevents us from getting tested,
it prevents us from finding the truth behind HIV, and the real stories,
and the real experiences of those who are HIV positive.
So, in 1985, antiretroviral medications were discovered,
and they created a new sort of way of dealing with HIV,
because what they do is they prevent the virus from spreading within our bodies
and, while it's not a cure, it's a huge step forward.
But even in a world where HIV is so prevalent, and we have medication,
and we have so much support, this idea that HIV is equal to death,
and that you are going to die if you get HIV, that it's the worse thing
that could possibly happen, and that you are subhuman if you get HIV,
how is it that this stigma is so misunderstood?
Well, I'm going to have to go back to the story again,
for before human immunodeficiency virus was even called HIV, it was called GRID,
which stands for "gay related immune deficiency."
And it was partly because HIV was so prevalent amongst the MSM,
or "men who have sex with men" population, when it first came into the public sphere,
but people so readily associated it with the gay community,
and they did it because they were scared,
they were terrified of this new virus that was spreading,
and they were terrified about what it would mean to get HIV.
And so, they held it separate, they associated it with certain people,
and they played the blame game, and they would say things like,
"Well, you got HIV because you're gay."
Or they would say things like: "You got HIV because you cheated on your husband."
And they would cope with it by saying:
"Well, me? I only have sex with my husband, I'm completely loyal,
and nothing bad will ever happen. I will not get HIV."
And they used it as a coping mechanism,
but it also distances ourselves from the truth.
Then, in 1985, a serious dent was put in this view,
and Rock Hudson, a popular Hollywood actor at the time,
died from AIDS-related causes and it also came out that he was homosexual.
And suddenly, this idea that we were so separate from HIV,
and that we were so distant suddenly shattered, because we're not.
HIV can affect anyone.
Other celebrities have been affected by HIV/AIDS.
Freddie Mercury died from AIDS-related causes,
as did Isaac Asimov, although he contracted HIV
through a botched blood transfusion,
before more stringent laws were put into place.
And one of the most prolific HIV/AIDS activists is Magic Johnson.
And when he came out in 1991, there was a huge uproar
about suddenly this American hero, this basketball player,
one of the most popular Americans at the time, being HIV positive.
And he retired.
But what gives me hope is that, in 1992, he was asked, I mean demanded,
to go and play for the all-star team where he led the west side to victory
and he was named the most valuable player.
How is it that HIV has only been around for thirty years
and there's been so much stigma, and so many misconceptions,
and so much truth that's been lost?
It has to do with fear: fear of HIV meaning death,
fear of what it's like to live with HIV,
and it's also a fear of what we can do to help it.
I know it's something that's frightened me for a really long time.
I mean, HIV is a devastating disease.
You, I, we really feel for those who have HIV,
but while it's easy to invoke compassion, it's a lot harder to invoke action,
because 33.4 million people are HIV positive.
What can I, as one person, do?
And we feel overwhelmed, and we feel that it's up to the doctors, the nurses,
the clinicians, and the leading scientists to do something.
But I'm here to tell you that we can change the face of the illness,
and it's up to us; each and every one of us can fight HIV.
And one of the most important ways I think we can do this is to get tested.
Testing! Is it scary? Yes. It could mean that we're HIV positive.
It could mean that we would have to find out.
It could mean that we would have to think about HIV and how it affects us.
But testing is so important, because if you get tested,
it gets you on essential medications earlier, it stops transmission,
and it breaks the stigma about getting tested.
I once asked a nurse why she thought it was so important to get HIV testing,
and she said, "Why not?"
And if you think about it, it really is that simple.
I get my eyes checked every year; I get my teeth cleaned every six months;
I do my laundry, often enough;
(Laughter)
and I get an HIV testing yearly. It's as simple as that!
Just another part of my medical routine.
Because we should break past this stigma behind testing,
and we should just go and do it,
because, well, the story of HIV has been written by fear, stigma,
and terror for the past thirty years.
We can replace it with one of understanding, compassion, and hope.
So go, get tested, and know your status,
because your status will not defeat you, it will not destroy us,
and it will nor define us.
Thank you.
(Applause)