AIDS Conference 2014

Dutch documentary maker Erwin Kokkelkoren, shares his experience at the AIDS conference 2014 in Melbourne via a series of blogs. The documentary titled the Time There-After is a triptych about life with hiv and aids in The Netherlands. The documentary was shown during the International AIDS Conference in Melbourne on 24 July, 2014. It was selected for the Red Ribbon Award, the world’s most prestigious award presented to community-based organizations in the response to AIDS. Its secretariat is hosted by UNAIDS. The makers of the documentary share their experiences with us as they presented their documentary at the congress.

View the trailer of the movie with English subtitles here. For more information on both the book and the movie, you can visit the website: www.detijddaarna.nl.

Blog by Erwin Kokkelkoren

Melbourne July 19

It’s a quarter to seven in the morning and I did not sleep last night. I’m exhausted, but cannot control my agitation. My entire body is aching, it shivers and trembles, I’m feeling hot and cold at the same time. No matter how hard I try, I can’t think of anything to comfort me.

Well over six hours ago, our plane landed in Melbourne, Australia. Exhausted by the long journey, but a bit euphoric, we set foot for the first time on Australian soil. “We’ve arrived”, we said. “We made it”. We exchanged a quick kiss to celebrate this moment.

We’d left Amsterdam three days ago, feeling fresh, excited and proud. Our documentary, ‘the time thereafter’ on thirty years of AIDS/HIV in the Netherlands, was chosen to be presented at the “AIDS 2014” congress. The fact that it took us two days of flying to get to Melbourne didn’t matter to us when we read the invitation at the time.

Because this biennial conference is not just any conference. Quite the contrary: this event is a magnet for global attention on every occasion. This conference attracts no less than 15,000 doctors, scientists, patients, activists, politicians, and people from pharmaceutical companies, artists and journalists. All of them to discuss really all that has to do with HIV and AIDS. What are the problems? Have we found solutions yet? Where have we been successful and where is more action required? What old enemies have been defeated and what new ones have emerged in our fight for a better world for HIV and AIDS patients?

Then, in the taxi from the airport to our apartment, we heard about the shadow that had been cast over this conference. On Thursday, the 17th of July, a plane that had left but an hour earlier than ours from the airport in Amsterdam had crashed, over eastern Ukraine. None of the passengers had survived; all 300 of them had died.

About 200 of them were from the Netherlands, the taxi driver told us. And some of them were on their way to the conference here in Melbourne…. They’d just mentioned this on the radio, so he informed us.

We rushed into our apartment. Finally, after 48 hours we had access to the internet again… It took two, three minutes, and then we knew, the taxi driver had not been lying.

There was more. Numerous friends, family members and colleagues in the Netherlands were deeply concerned and were looking for some sign of life from us. ‘Where are you? It is as if you’ve vanished from the face of the earth…’ Even more painful was the moment when a name was attached to the tragedy. Joep Lange, for years one of the most admired scientists in the field, had been on his way to Melbourne together with his wife and a number of his colleagues and was among the victims.

We knew Joep. Everyone in Amsterdam, everyone in the Netherlands, everyone in the world who has anything to do with AIDS and HIV knows Joep: he was not afraid to take the lead, to be a front runner. He matched skills and knowledge, with great commitment to his patients. He had helped to change the face of AIDS, turning it from a deadly disease into a chronic one.

Joep played an important part in the fact that after my AIDS diagnosis 25 years ago, I’m still alive. That to me is the most precious gift someone has ever given me. And now, just before Joep was coming to Melbourne to contribute to the conference, he got into the wrong plane. At times life can be so unfair.

My body is still aching. But inside my head a comforting thought came up. The upcoming conference must be a success. It really does! We owe it to Joep and we owe it to each other.

Melbourne, July 20

Setting eyes on the congress center for the first time is an intimidating experience. Its size is enormous! You slow down automatically just seeing it. Funny, how big buildings as a means of showing off influence and power are an ever-recurring phenomenon in 5000 years of human history: Just think of it, even the tiniest of pyramids is gigantic, every mediaeval cathedral tries to reach the skies with its towers and even in our current century, nothing’s changed. People only take you seriously if you can seat at least 50.000 people in your football stadium. “If you wish to make a statement, make a bold statement”, apparently.

Well, so we have a grand workplace. One that is fitting for the topic of our conversation: I’ve experienced AIDS and HIV as nothing less than huge, these last 35 years.

AIDS was enormous and intimidating from the very first day I it was confronted with it. The first patients infected with this new disease, in the eighties, passed away very quickly. It was often devastating. It all came as a great shock! What an impact this disease had. It was frightening, a disease that already left such a tragic mark, even before it had been given a name.

But also after the initial encounter, everything about AIDS remained enormous. The number of patients rose very rapidly. The list of countries and cities affected, seemed endless. There was no way of drying the tears that AIDS caused. Are thoughts were: where will it all end?!

Nowadays, we sometimes seem to forget that the world’s reaction to this disease has been impressive too. In spite of the sometimes dual and different motivations, the fierce battle, the prejudices that needed to be dealt with, as well as the hopelessness, great efforts have been made to tackle the disease and progress has been made in a relative short period of time. In 1996, hardly 20 years after AIDS first appeared, the first medication became available in some western countries that could stop the virus from multiplying. Of course, it had its teething problems, which caused pain and disappointment in these first years, but still…it was there and in hindsight it had come so quickly.

Now, twenty years on, medication has become even more effective and its side-effects easier to cope with. Looking back, that development has gone fast as well.

I refer to it as the forgotten revolution: that it took one generation to change a deadly disease, a plague almost, into a chronic condition. That revolution however does not mean we can sit and relax, no, we need to double our efforts to solve today’s shortcomings we still face. It helps though to reflect and think about all the amazing developments that have already taken place. If all your thoughts are on the enormity of the suffering and none on the enormous success we’ve had, we do injustice to ourselves. There’s no need to do that.

The first to welcome us at the congress center is a good looking young man, who’s very friendly, very tall (2.05 meters!). The way the Australians organise this conference is impressive. Thousands of volunteers are working round the clock to make sure that all is set for the official opening. They’ll manage, no one doubts that.

The motto of this conference radiates decisiveness: “stepping up the pace”. Stepping up the pace, there’s no time to lose, start working: that is the purpose of this week. I agree fully with it. We simply cannot accept that still millions of people do not receive the right treatment and medication. And, as long as there’s still even a single man or woman who’s discriminated simply because of the fact that he or she is ill, the work is not done.

I turn around and look at the huge entrance hall that we’ve just crossed. My eyes hover over all those tough guys, who are working constantly. Great I think. I’d like to tell them to take a break every now and then. Because it’s good to take some time to reflect what you’ve already achieved. We’re not there yet, still lots of work to do. Still, a revolution that brings good things is rare in history. It’s good to consider that.

Melbourne, July 21

Oktariana is her name, the young Indonesian woman who left the deepest impression at the official opening of the 20th HIV/AIDS Conference. She recounts her personal story in fluent English: what it’s like as a young girl to be infected with HIV in a country that doesn’t know how to deal with such an issue; the obstacles she encounters every day as a young single mother, and her future where nothing is certain, except the knowledge that it will be difficult and complicated. Not for one moment does she seem impressed by the enormous stage from which she is delivering her story, or by the five thousand people listening to her. She’s passionate, intelligent, and courageous.
If one purpose of this conference is to let people return home inspired, then Oktariana has already achieved this all by herself.

Four or five speakers had already gone before her, and there were five or six more after her. It made the program a bit long, especially as not everybody is up to the circumstances. So be it. The evening wasn’t the less memorable for it. I cannot think of any other conference where HIV and AIDS are approached from so many different angles within just a few hours. Medical, political, activism, cultural and the intensely personal; anything can be an occasion to start talking about HIV and AIDS.

I have slept for a few hours now and I am still in bed. I don’t know what time it is, but through a gap in the curtain I can see that a new day is dawning. The great Flemish playwright Jan Fabre calls this the ‘blue hour’. It is the best time to let go, to have your head in the clouds, and to open up your soul and your bliss. Tradition has it that this is the most productive time for artists, philosophers and anyone else who is on a quest. I know this hour very well. I love it. Even though I know I will always come back to the most sensible and at the same time most pointless question we can ask ourselves: What am I doing here?

When I was diagnosed with HIV nearly 25 years ago, they found I had been carrying the virus in me for some time already. Dr Danner told me with pent-up frustration the bad news he had discovered together with his colleague, Joep Lange. Danner was just as disappointed by the results as I was. I liked that.

‘There is nothing I can tell you,’ he said. ‘It would be unfair. Try to enjoy life as much as possible. There is a chance you will get into trouble soon. But if you don’t want to enjoy, that’s okay too, I think.’ Never has a doctor been more frank with me than Dr. Danner was then. He had let go, wavered a little, and then came to the point. At least that was my impression.

Danner, Joep Lange and many others then went straight to work to try and save as much as possible. And successfully so. For many in 1996, the drug cocktails came too late, but for many others they didn’t. For me, too, they came along in time, because as you can see, I’m still here.
I enjoy life to the utmost, as always. I want to get the most out of it, day by day. If I got the chance, I want to keep that up for a very long time still. That’s my answer to the question that comes up every blue hour.

At yesterday’s opening ceremony, however, all my wisdom and certainties were toppled for a few minutes. Oktariana was not the only person who left a deep impression. Lambert Grijs, the Dutch AIDS ambassador, did so too. He gave a touching memorial speech for the six AIDS workers who were killed in a plane crash on their way to Melbourne. Joep Lange was one of them. The same Joep who 25 years ago fought so hard for us, the men and women who had so little time left. For him, who still seemed to have so much time ahead, life had come to an abrupt end.

I took another glance through the gap in the curtain. The blue hour is nearly over. The new day is about to arrive. Time to get up and get to work.

Melbourne, July 22

We have started. All stands have been put up and decorated, all attendees have been registered, and all welcoming speeches at all opening sessions have been given. We can get to work.
We know where we have to be, we don’t have to go looking for the Global Village, the media area, the rooms where the plenary sessions are held. We can find our way blindfolded to the eating places and the toilets, while the more experienced participants have already discovered the quiet and secret spots in this busy place where you can have a good talk without being disturbed.
You notice as soon as you walk into the conference center. The nerves and excitement have made place for targeted action. Making a difference is what it is all about; making sure to make the most of all those months of preparation.

Today we start with a meeting where five renowned scientists give a picture of HIV and AIDS in 2014. Where do we stand in terms of new infections? How many people have died in the past year? What progress has been made with the production of that new medication?

The answers were shocking!
As an HIV patient living in Western Europe, you tend to view problems through rose-tinted spectacles. Many of us believe that we are gradually nearing the finish. It will take a while still, of course, but then we will have everything under control, and HIV and AIDS will have become history.
But, as I said, the answers were shocking.
Six thousand people are infected with HIV every day. 6,000!! Every day!
Nearly two million people die of AIDS every year. Two million!!
In South Africa, half the number of pregnant girls over 24 is HIV infected!
That’s a lot of girls!
One of the speakers said that we are still in the process of getting the epidemic under control, and that we are still nowhere near working on a solution.

I haven’t even mentioned any of the other problems, like stigmatization, discrimination and exclusion.

For the evening session, Janssen invited us to attend their annual HIV patient community lecture by Professor David Margolis, Professor of Medicine, Microbiology and Immunology, and Epidemiology at the University of North Carolina at Chapel Hill and the leader of CARE: The Collaboratory of AIDS Researchers for Eradication. The theme of his speech was: what progress have we made in our search for the final solution?

We looked forward to it.
We’ve been in contact with Janssen (Janssen Benelux) who supported first the book ‘the time thereafter’ and following that the movie, based on the book. We are artists, but feel at ease when working with Janssen, as we share the same commitment in fighting HIV and AIDS.

The participants came from all parts of the world and all brought along their own expertise. This made for a lively debate before, during and after the lecture.

The evening was flawlessly organized.

The focal point of the evening, of course, was the presentation by Professor Margolis. His account of the road that has been traveled and the work that has yet to be done was clear, stimulating and proof of great expertise. What struck me, and what rather disappointed me as an HIV patient, was the conclusion of his story: we’re not there yet, not by a long shot. Yes, we’ve made tremendous progress. And yes, many people are working very hard at a real solution, but THE pill against HIV and AIDS won’t be in the pharmacy yet next year. It’ll probably take longer than we would like.

I now lead a very happy life. Despite the physical limitations brought about by 25 years of HIV infection, I don’t feel short-changed. Quite the opposite: I am a privileged person. But I am also a person with desires that are universal. When a scientist starts talking about the medication that will make me an HIV-free, healthy person again, I just want to hear one thing: ‘It’s coming, we’re nearly there; hold on a little bit longer, and then we’ll have it.’

Sadly enough, it doesn’t work that way. ‘You can’t always get what you want,’ as the Rolling Stones would say. I know. Life isn’t like that. And believe me, I too can see the beauty of what’s missing. I am the first to appreciate the efforts needed to achieve the cherished goal.

But if a breakthrough had been announced last night, I would not have objected.

We spent some time talking about all this. Then it was time to exchange addresses, hand over invitations, and have a last drink. After that, everyone went their own separate ways and disappeared into the night.

Melbourne, July 23

Storm clouds had gathered over the start of this conference. First there was the disappointing news a few weeks ago that the Boston baby was again diagnosed with HIV, after the child had been ‘clean’ for three years. Then there was the horrific news of the airplane that crashed over Eastern Ukraine. We all know the sad consequences: nearly three hundred people were killed, including six friends and colleagues who were on their way to this conference. All fifteen thousand participants in the conference had to find ways to come to terms with those two events. Although they cannot be compared in any way, they both caused low spirits.

The answer to this question is to be found at the conference center every day from seven o’clock in the morning to far into the night: by not giving up, but by carrying on the hard work. What binds us together here in Melbourne, what will always bind us together as HIV and AIDS workers, is the need to make the utmost effort to achieve an HIV and AIDS free world as soon as possible.
That’s what it’s all about. That’s why we’re here. That's why we’re working so hard.

No one, literally no one of the large and diversified group working here every day is in any doubt that we will succeed. Opinions may differ about when we will achieve our goal, whether it’s a matter of a few months or many years. Yet we all firmly believe that the day will come when the world will at last be rid of HIV and AIDS. That belief is probably fuelled most of all by the deep-rooted conviction that it must happen! That we have no choice but to succeed. HIV and AIDS cause loss, suffering and stigmatization. We cannot accept that, and we will not accept that. Never. That is why at this conference, and precisely at this conference, we are probably working harder than ever before.

What lots of people are struggling with is how to deal with the facts that are presented at this conference. The scientific findings are not in doubt. They always provide the basis for the debate. Often, however, opinions differ on how to interpret those facts and how to share them with the rest of the world.

There was a spirited discussion at the reception of the Dutch delegation yesterday evening on how to deal with the successes of the Dutch HIV and AIDS policy.
We Dutchmen like to talk about the Dutch approach. It is a concept that stands for openness, transparency and extensive cooperation, both at the scientific and medical level, and between the many patients and interest groups. This approach springs in part from our character as a nation. We Dutchmen don’t mince words. We rarely keep our opinions to ourselves. Politicians play an important part in that process too, as the long-time driving force behind such extensive cooperation.

The result of that Dutch approach is that the problems surrounding HIV and AIDS in the Netherlands seem relatively surveyable and manageable compared with many other countries. Our healthcare system is highly accessible; virtually every problem can be discussed; discrimination and stigmatization are countered as much as possible, and the quality of the treatments is often good.
The central question of the debate, however, was: what can or should we do? Should we promote our approach, with its many positive results, with other countries, or should we rather show some restraint? Aren’t we being too self-righteous showing off how well we are doing things here? And would other countries really be happy to see those smartasses from Holland? Wouldn’t it be better to let them find their own way?

There are merits to both approaches, but I would choose the first. That’s because I believe in the Dutch approach. And I believe in sharing success. Always! Even if it’s from my own country. As a thoroughbred optimist, I believe that a combination of hard work, belief in success, and sharing that success is the golden combination that will ultimately lead us to the goal that we are all pursuing: a world free of HIV and AIDS.

Melbourne, July 24

Bill Clinton and I were the main speakers today. Bill, because for eight years he had been president of the world’s most powerful nation, and because he will always be heard, and rightly so. And I, I had the right to be heard too, after all these months of preparation.

Bill first: The buzz had been going round for several days that he would come on Wednesday. It wasn’t formally announced, but we were pretty certain. I don’t really know why.

We were right. He chose Wednesday for his appearance. And there he was! Suddenly, out of the blue, he appeared on stage. Smiling and waving as always. Exactly, as you’d expect him to be, only ten times more impressively.

You’ve grown old, I thought. His movements were a bit stiff. And what happened to that voice? Is that the result of a life of talking, or a lack of sleep last night? It was definitely, a much deeper voice than before, and with a heavy rasp. Quite nice, actually, but also quite worrying.

Once he had installed himself at the lectern, I thought: you ought to quit doing this, Bill. It’s time to take a break. Go home, read a good book, have a cup of tea with Hillary, and watch a good western movie tonight! Because why? Why are you still doing this?
You’ve spent your whole career trying to save the world. You examined and discussed every small and big conflict. You know very well how hard it is to make the world tick as it should. And we’re talking about a virus and a fatal disease here. HIV and AIDS are not the easiest adversaries. Even if you can’t see them, they’re not just little boys. Even when you think you made them bite the dust at last, they're off again. They just like to go their own way!

No, HIV and AIDS are not the kind of opponents you want to tackle at your age. They’re unreliable cheats, always have been. You just can’t win against them.
Why? Why, I ask you once more. It’s quite okay at your age to pass the relay to someone else. You can rest, Bill, now that you’ve reached the last quarter play.

But idleness is not a word you know. We know that. And of course you were perfectly right in what you said this afternoon, that the time has come to deliver more with the same money, because there is a lot of waste here and there. Well, it was great to see you come along and tell all those big guns some home truths. It was necessary and to the point.
Thank you.

The next stop was the Community Dialogue Center. Bert, my partner in crime and love, and I were to give a performance there, speak, and then start a debate with fellow artists. The theme of the meeting was: how can artists make a meaningful contribution with their HIV and AIDS-related work?

The key points of my argument were to make sure that your work needs to be of the best quality and that your work not only needs to be seen and heard in our safe HIV village, but that the whole world sees and hears it. The HIV village may be necessary at times, but usually it’s best to leave it far behind you. Especially, if you’re an artist.

We did our stint with passion and conviction, because there’s no other way we can do it. It went extremely well. Our contribution was professional, dramatic, and delivered with balls.
A debate began. Some people in the audience agreed with us wholeheartedly. Others barely understood that there is also a life outside HIV village.

Afterwards, we went into the town to relax and reflect on the day; we felt happy and proud. It seems we were able to open up a few windows. Some people suddenly saw life from a different angle. Quite an achievement, we thought.

‘What did you think of Bill? ‘, I asked my partner.
‘He’s grown old.’ He paused. ‘But I hope he’ll carry on for a long time yet, because we still need him.’
And what did you think of us, I asked him. ‘We are good, and if we keep going, we’ll surely become better still.’ I nodded. ‘Then we’ll do that. We’ll keep going, and we'll become better still.’

Melbourne, July 26
It’s over! We’re done. We meet again in Durban in two years’ time. We all kiss each other. I let myself be firmly hugged one more time by those fantastic Australian volunteers, pick up my bags, and walk slowly through the enormous hall that has become so familiar to me. I turn around one more time to wave. Now I’m outside. The weather is mild for the time of year.

Until the next conference in South Africa, we will go back to work and make every effort to add a meaningful chapter to the HIV and AIDS story in Durban.

We are tired, but inspired. After all, you have to be a cold fish not to be profoundly stirred and motivated by so much positive energy, so much goodwill and so much knowledge. No, the first objective this week – to recharge all our batteries – has been fully achieved.

But what else has this conference accomplished? Were there any major medical breakthroughs? Were any new drugs presented, and if not, were there at least any new insights? Or perhaps a new team of scientists stood up who fired up the hope of a final solution with amazing theories and promising trial results?

Steps have been made. Small steps in one research area, bigger steps in another. It may be a cliché, but when you think about it, it rings true: mountains can be moved, but it takes longer than one week in Melbourne.
It was my first time. I had no idea. Moreover, art is my occupation, a field which depends largely on dreams and the imagination! It makes you look at things from a different angle. Of course, I realise that my dreams do not easily square with the obstinate reality of science. All the same, a slight feeling of disappointment gnawed at the euphoria that had long prevailed.

Until I saw her before me again! That magnificent, proud woman from Uganda. She had not prepared a speech, she said. ‘I speak from the heart.’ She was a doctor, working with HIV and AIDS patients. In Uganda!

When she spoke from that immense stage, in the clearest possible terms, I realized how one woman can make a difference. I saw ‘courage’ as I hadn’t often seen in my life before. I was looking at human dignity in its purest form. I felt an optimism that couldn’t be dispelled by any thought. It was clear that her life was never safe in Uganda, but she decided that was no reason to back down. ‘I will speak!! I will speak!!’

We too, my husband and I, had worked hard to be heard. The tragedy of the plane that crashed in the Ukraine, with all those Dutch casualties, didn’t make it easier. But not impossible!
We did well! I dare say so with the utmost modesty. We told our story to the world: our film immortalizing, in a most penetrating way, the history of 30 years of HIV and AIDS. And it was seen. That’s great!

Finally, I would like to thank you, readers of this blog, very much. It was a great experience. I hope it has given you something, as it has given me. See you in Durban!

Sincerely yours,
Erwin Kokkelkoren