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I was diag­nosed with AIDS in 1986 and I’m still around

'My virus is older than all the young people that I now work with,' writes Mellors [Courtesy of Shaun Mellors]
‘My virus is old­er than all the young peo­ple that I now work with,’ writes Mel­lors [Cour­tesy of Shaun Mel­lors]

The Inter­na­tion­al AIDS Con­fer­ence is the largest con­fer­ence on any glob­al health issue in the world. First con­vened dur­ing the peak of the AIDS epi­dem­ic in 1985, it con­tin­ues to pro­vide a unique forum for the inter­sec­tion of sci­ence, advo­ca­cy, and human rights. The 22nd Inter­na­tion­al AIDS Con­fer­ence (AIDS 2018) will be host­ed in Ams­ter­dam, Nether­lands, between July 23–27, 2018. 

I was diag­nosed with HIV on Decem­ber 24, 1986. I remem­ber the day so well — I had a stu­dent sum­mer job at a super­mar­ket chain. I col­lapsed at work and was rushed to the Johan­nes­burg Gen­er­al Hos­pi­tal.

I was giv­en an AIDS diag­no­sis and a death sen­tence, just six months to live, after a doc­tor exam­ined me and assumed that (because I dis­closed my sex­u­al ori­en­ta­tion) I had to have AIDS. What fol­lowed was days of con­fu­sion, fear, anx­i­ety and iso­la­tion: bio­haz­ard stick­ers on my hos­pi­tal door, hos­pi­tal staff and vis­i­tors hav­ing to wear the full pro­tec­tive cloth­ing (look­ing like space mon­sters, I thought). I was con­fronting my death at the age of 21.

But I man­aged to beat the doc­tor’s death sen­tence.

Six years lat­er, in 1992, I attend­ed the Inter­na­tion­al AIDS Con­fer­ence in Ams­ter­dam under the theme “A world unit­ed against AIDS”.

By then, I had already pub­licly dis­closed my HIV sta­tus in South Africa. I had stopped see­ing myself as a vic­tim or a patient and start­ed see­ing myself as a per­son, a per­son liv­ing with HIV. I had found spaces where I did not have to fear dis­clos­ing my HIV sta­tus or be con­cerned about peo­ple dis­crim­i­nat­ing against me. I felt I was mov­ing for­ward with a greater sense of pur­pose.

Almost 8,000 peo­ple — sci­en­tists, clin­i­cians, NGO work­ers, pol­i­cy­mak­ers and peo­ple liv­ing with HIV — were with me at that con­fer­ence. It real­ly felt like the world was unit­ed against AIDS. I used this oppor­tu­ni­ty to con­nect with them, be inspired by them and share my expe­ri­ences. It was an impor­tant plat­form for bring­ing togeth­er all the dif­fer­ent stake­hold­ers and part­ners in the fight against HIV and AIDS.

But, back then, it was not easy to hold such con­fer­ences.

HIV and human rights

The organ­is­ers, the Inter­na­tion­al AIDS Soci­ety (IAS), orig­i­nal­ly planned to hold that year’s con­fer­ence in Boston, US. But in 1987, at the height of a glob­al pan­ic about HIV and AIDS, the Rea­gan admin­is­tra­tion had imposed a ban on HIV-pos­i­tive for­eign­ers trav­el­ling to the US; the ban was offi­cial­ly reversed only 22 years lat­er, by Pres­i­dent Barack Oba­ma. The IAS even­tu­al­ly decid­ed to move the con­fer­ence to the Nether­lands to avoid com­pli­ca­tions.

This was per­haps one of the first inci­dents that made every­one realise that HIV was a human rights issue — peo­ple liv­ing with HIV were being denied most fun­da­men­tal rights only because they were car­ry­ing a virus. Some politi­cians in the US (and in oth­er coun­tries around the world) thought they could pre­vent the spread of HIV by clos­ing their bor­ders. Of course, HIV knew no bor­ders and did not dis­crim­i­nate based on nation­al­i­ty. There was already a grow­ing HIV epi­dem­ic in the US, so these restric­tions did not make much sense.

Despite the venue change, the con­fer­ence was extreme­ly suc­cess­ful. By get­ting all those peo­ple togeth­er, against all odds, the organ­is­ers showed the world that in order to have an effec­tive response to the HIV epi­dem­ic, peo­ple with HIV sim­ply had to be includ­ed into the con­ver­sa­tion. They had to be part of the dis­cus­sions and the deci­sions about the dis­ease that they were liv­ing with.

At the con­fer­ence, I recon­nect­ed with many friends who I had met at a Lon­don con­fer­ence a year ear­li­er, and sad­ly, heard sto­ries of some who did not make it, as they had died from HIV-relat­ed com­pli­ca­tions. We were los­ing far too many friends to HIV-relat­ed ill­ness­es all around the world. There was no treat­ment back then — all we had was hope, pas­sion, activism and each oth­er.

At the Ams­ter­dam con­fer­ence, I also became painful­ly aware of the “health divide” between rich coun­tries and poor(er) coun­tries.

In the glob­al north, clin­i­cal tri­als relat­ed to anti­retro­vi­ral (ARV) treat­ment were being car­ried out. Many peo­ple with HIV lucky enough to be liv­ing in this part of the world were vol­un­teer­ing in these tri­als to see whether a cer­tain drug would work.

By doing so, they were not only help­ing them­selves, but also every­one else liv­ing with HIV — even the ones liv­ing on the oth­er side of the globe, like myself. I am very grate­ful to those vol­un­teers who par­tic­i­pat­ed in these clin­i­cal tri­als because they allowed sci­en­tists to demon­strate what worked and what did not work. But most impor­tant­ly, they gave us hope that one day there would be treat­ment for all.

The 1992 con­fer­ence also had ses­sions on “psy­choso­cial care and treat­ment” which includ­ed alter­na­tive, com­ple­men­tary and tra­di­tion­al ther­a­pies and lots of empha­sis on coun­selling pro­to­cols, treat­ment of oppor­tunis­tic infec­tions, deal­ing with death, dying and mul­ti­ple loss­es.

This was sad­ly the real­i­ty for many of us in the glob­al south — try­ing to live with HIV by try­ing dif­fer­ent ther­a­pies and rou­tines to stay as healthy for as long as pos­si­ble. We were shar­ing our fears and con­cerns in coun­selling ses­sions, with some of us even becom­ing coun­sel­lors our­selves. Although we had treat­ment for oppor­tunis­tic infec­tions, there was a con­stant sense of loss and fear dur­ing the mid to late 1990s.

Then Van­cou­ver hap­pened — the Inter­na­tion­al AIDS con­fer­ence of 1996. It was at that con­fer­ence in Cana­da that we learned ARVs were work­ing. Final­ly, we had hope for a treat­ment. I remem­ber stand­ing in the hall dur­ing the con­fer­ence when the results of the clin­i­cal tri­als were announced and say­ing to my friend, “We are going to live!”

Real­is­ing that a cock­tail of drugs could keep us alive was incred­i­bly emo­tion­al and empow­er­ing. Of course, the glob­al health divide was still as valid as it was four years ear­li­er. There was a treat­ment that could work, but we did­n’t know when it would reach the peo­ple liv­ing in the glob­al south.

It took anoth­er four years for the world to take action to right this wrong. At the 2000 AIDS con­fer­ence in Dur­ban, South Africa, a com­mit­ment was made to address this “health divide” and make sure every­one liv­ing with HIV, no mat­ter where they live, had access to ARVs.

Build­ing bridges

Fast for­ward to 2018. I am for­tu­nate­ly still around — a lit­tle grey­er, with more wrin­kles, a bit wis­er but still involved in HIV activism. And for this year’s Inter­na­tion­al AIDS con­fer­ence, I am once again head­ing to Ams­ter­dam — the city that host­ed us in 1992, when it was not pos­si­ble for us to trav­el to the US. The theme of this year’s con­fer­ence is “Break­ing Bar­ri­ers, Build­ing Bridges” and it will bring togeth­er 25,000 peo­ple work­ing in dif­fer­ent sec­tors of the HIV response.

Incred­i­ble strides have been made in the 26 years since the first Ams­ter­dam con­fer­ence. Twen­ty mil­lion peo­ple liv­ing with HIV are now on ARV treat­ment and due to more wide­spread access to effec­tive treat­ments, HIV inci­dence and AIDS-relat­ed mor­tal­i­ties are steadi­ly decreas­ing. There is also greater recog­ni­tion of the impor­tant role effec­tive treat­ment plays in pre­ven­tion, and the mere fact that peo­ple are liv­ing with HIV longer.

While we should cel­e­brate these con­sid­er­able achieve­ments, there is still much that remains to be done. Today, we are fac­ing an impor­tant turn­ing point in the fight against HIV. If we can low­er the num­ber of new infec­tions and ensure that those who are liv­ing with HIV are all test­ed and sup­port­ed to be on treat­ment, then we can real­ly beat AIDS.

But we are fac­ing some sig­nif­i­cant chal­lenges. HIV is no longer receiv­ing the polit­i­cal atten­tion and fund­ing that it requires. More­over, in some parts of the world, the virus is still wide­spread, espe­cial­ly in groups and pop­u­la­tions that are ostracised or crim­i­nalised — gay men and oth­er men who have sex with men, sex work­ers, trans­gen­der peo­ple and peo­ple who use drugs.

The fact that these pop­u­la­tions are crim­i­nalised makes it hard­er for them to access the infor­ma­tion and ser­vices that they require to pro­tect them­selves from HIV and as a result, we can see an increase in HIV in these pop­u­la­tions. We will nev­er end AIDS if we chose to exclude or ignore the needs of all pop­u­la­tions and peo­ple.

Accord­ing to the lat­est sta­tis­tics from UNAIDS, while there are 21.7 mil­lion peo­plein treat­ment, there are still 15.2 mil­lion who are not. We need to redou­ble our efforts and our resources to ensure that all peo­ple who require access to treat­ment, espe­cial­ly the groups that are men­tioned above, have access.

Treat­ment keeps peo­ple healthy, allows peo­ple to engage in soci­ety and live a nor­mal life and also reduces the chances of them trans­mit­ting HIV. For exam­ple, I have an unde­tectable viral load in my body — the treat­ment that I am on is sup­press­ing viral activ­i­ty so the virus is dor­mant. This means that I can­not trans­mit HIV to a sex­u­al part­ner. Sci­en­tists are still con­stant­ly work­ing to improve these treat­ments, make them eas­i­er and sim­pler to take and min­imise their side effects.

We also have a lot of work to do around HIV pre­ven­tion. There are still 1.8 mil­lion new HIV infec­tions a year and this is sim­ply not good enough. We know what works to pre­vent HIV and we need to ensure that every per­son, no mat­ter who they are or where they are, is able to choose what option they feel works for them.

We know that HIV is the lead­ing cause of death among ado­les­cents and young peo­ple in sub-Saha­ran Africa and the sec­ond-lead­ing cause of death glob­al­ly, but we also know that ado­les­cents and young peo­ple are not inter­est­ed in HIV.

We need to find dif­fer­ent ways of ensur­ing that HIV edu­ca­tion is inte­grat­ed into sex­u­al edu­ca­tion and that young peo­ple are active­ly engaged in design­ing and shap­ing strate­gies that work best for them. Yes, I, too, was young when I was diag­nosed with HIV and my virus is old­er than all the young peo­ple that I now work with.

This is why I remain com­mit­ted to ensur­ing that we have the polit­i­cal com­mit­ment, the resources and the will to break down bar­ri­ers and build bridges that allow us to have choic­es with dig­ni­ty, to remain health­i­er, imma­te­r­i­al of HIV sta­tus, no mat­ter who we are or where we live.

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