Red Trese writes an open letter to an HIV "advocate" who misrepresented himself as a person living with HIV at the 2014 International AIDS Conference. “You have callously freeloaded on our personal struggles for your personal aggrandizement,” he says, adding that this is reprehensible.
Last year, in a workshop in Bangkok, Thailand, you saw me break into tears as I opened old wounds when I told my story on how it is to live with HIV. To share a well-hidden part of my life in front of people I mostly don’t know and who also don’t know me took me a whole great deal of courage.
You were there with me.
You hugged me after I shared and told me I have your support.
I believed and trusted you.
I was happy to talk with you on how we can work together on the issues faced by PLHIVs.
And for a while, it seemed that we both tried.
And so I was happy to know that you also got a scholarship for the 2014 International AIDS Conference in Melbourne, Australia. I shared your excitement on the great potentials on how our advocacy could be made better through raising the issues of Filipino PLHIVs and learn from the relevant updates from experts at an international level.
You had your speeches and I was proud that you got those openings to speak of our realities.
But I started to notice something wrong.
I heard from you and have read in programs of your speaking engagements that you represent an international network of people living with HIV. I started to wonder why since we met, we have not had the conversations on your status. I just found it odd that you didn’t trust me enough after I have been vulnerable with you during my disclosure. Other PLHIVs I meet feel the need to share, as we share in the same pains and struggles.
I just found it odd and have shared my confusion to some PLHIV friends.
Then I read a Facebook status from Fr. JP Heath, a close friend who openly lives with HIV:
“I’m deeply disturbed.
While in Melbourne I have heard talk of a person who is misrepresenting himself as a person living with HIV. This afternoon I bumped into him in the PLHIV lounge. I will always give every person the benefit of the doubt, and so I asked a few questions which could help me show he was not a fraud.
1. What medication are you taking?
2. Where do you receive it?
3. How frequently do you have to take it?
4. Who is your Doctor?
The answer he gave was of a medication which is not available in his country yet, the frequency he claims to take it inconsistent with that medication, which I happen to take as well. If you are reading this and know it applies to you please know that it is offensive. Those of us living with HIV have and continue to fight a long and hard battle just to have our voices heard at the table. For you to be here claiming to be living with HIV and using the resources meant to help people living with HIV from your country get here, and thus steal their place at the table is unacceptable. I have no intention of humiliating you publicly. Please leave gracefully.”
I was enraged. I felt so betrayed.
You were not at the AIDS Conference to talk about our struggle as PLHIVs in the Philippines. You were at Melbourne as a tourist. I saw your Facebook filled with what places you have been to, and the food you ate, and not much on any of the conference sessions you were supposed to comprehend, which was why we were given the scholarship.
You are an AIDS tourist.
What makes me really angry is that I can think of 10 Filipino PLHIVs who should have been in your place. They should have been with me in sessions where we could have challenged together research that declared that Efavirenz had no neurocognitive impact. They could have been me in different sessions in pressuring leaders on how ARV stock-outs have made many of us feel great panic and uncertainty for our future. They could have been there to be in solidarity with other PLHIVs and organizations from around the globe. They could have gone back to the Philippines and their provinces with full hearts and minds to serve our fellow blood sisters and brothers.
You pretending to be HIV positive is not a joke for all of us who are living the pain of the stigma and discrimination, the struggle of enduring the ARV side effects, and the dire state of our access to quality HIV treatment.
While you were busy taking photographs with high profile leaders, back in the Philippines, a PLHIV died for being not allowed to be transferred from a private hospital to a treatment hub for not being able to settle his fees. If you must know, his sister was stuck soliciting support from PCSO when he died. Another PLHIV went blind due to the lack of affordable medication to treat his opportunistic infection. And while you were enjoying Melbourne around the city trams, PLHIVs were pooling money to fund two other PLHIVs who did not have fare to reach treatment hubs.
You had the chance to be at a platform to pressure the powers-that-be on what should be done.
But you didn’t.
But then, how could you? You do not live our pain.
You callously freeloaded on our backs for your personal aggrandizement.
The day will come when I and many of my blood sisters and brothers will find the great courage to be the voice that has been silenced by stigma.
Today I start by refusing to be misrepresented.