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Jul25

Lost heroes: talking with a friend

Friday, 25 July 2014 Written by // Philip J H Dawson Categories // International AIDS Conference , Philip J H Dawson, Conferences, Current Affairs, Features and Interviews, International , Living with HIV

New PositiveLite.com writer Philip J H Dawson interviews Peter J. Smit from The Netherlands about his work in HIV and AIDS and also how he got to work directly with plane crash victim Joep Lange who was heading for Melbourne and AIDS 2014

Lost heroes: talking with a friend

Joep Lange and life-partner Jacqueline van Tongeren

Philip: I want to keep most of the focus in this interview on the work related to HIV and AIDS, however, with the tragedy that happened obviously I want to touch on the crash of Malaysian Airlines Flight MH17: It has been reported 193 people were from the Netherlands – flown out of Amsterdam - perished in the flight shot down – and, over 100 of those people were going to the International AIDS Conference in Melbourne, Australia. Can you express to me what you are feeling, Peter? 

Peter: Philip, a correction first. The number of 100 was mentioned by officials of the IAS when they heard of the aeroplane being shot out of the air. However, we think that the number of people going to the Melbourne AIDS 2014 conference was possibly not more than 10. I knew five of them, and two of those were dear.

Despair, grief, deep mourning and anger is what I’ve been feeling the last week. With the first of the coffins now flown in into The Netherlands, and a national ceremony, broadcast on Dutch national television, as well as a silent march in white, yesterday, I think that healing of this trauma can start.  But I can’t say I feel that yet.  Such a disgrace; 293 people, among which at least five important workers in the field of HIV/AIDS, shot out of the air in a conflict between two nations who both have abysmally dismal records in (not) handling their HIV-epidemics. It is truly sickening and maddening at the same time. 

What did many of you and your colleagues/friends do once you started to hear the news? Did you congregate somewhere to console each other? 

Well, some of us were and are in Australia. They have been lucky in so far as they had each other to seek comfort for/with. Today,  July 24th was the first official remembrance gathering at the Amsterdam Medical Centre, the University hospital of Amsterdam where Joep Lange spent most of his working days as an HIV-physician and which enabled him to start his international career. In fact, PharmAccess, and the AIGHD (Amsterdam Institute for Global Health Development), two organisations both very much attached to the AMC-structure, and both founded by Joep, provided colleagues and speakers in a sober and short ceremony. A much larger memorial was announced today in approximately two months. 

All the work and all the preparation for the Conference must have been intense beforehand for many people who did not go to the Conference. Can you describe their shock in hearing the news? 

No, I cannot. I cannot possibly start to speak for others where their feelings are concerned. 

How great do you feel the magnitude of the loss is to Amsterdam – and to the Netherlands? And, furthermore, to the International AIDS community? 

Well, the IAS has already stated that a true giant, in the person of Joep Lange, was lost. But there was more. Joep’s life partner, Jacqueline van Tongeren, was travelling with him. A very, very sweet person with great emotional intelligence who sacrificed herself for HIV/AIDS work. Also on board of the plane was the Dutch political HIV/AIDS-lobbyist Pim de Kuijer, formerly employed by the EU apparatus. And his colleagues Martine de Schutter and Lucy van Mens - all three (see below) very dedicated professionals.

I cannot ‘calculate’ that, or give any figure to that. The loss is immense. 

You mentioned world-renowned AIDS researcher Joep Lange  was among those killed. You knew him and his partner, Jacqueline. What did you respect him for and can you share your feelings?

Prof Dr. Joep Lange (born 1954) was the greatest HIV-specialist and -activist this country has produced. Joep discovered decades ago that determining viral loads was essential for assessing the health and health prospects of people with HIV. He was one of the, if not THE, founding father(s) of the principle of combined ARV’s (combination therapy), he devised the methods for countering MTCT (mother to child transmission); he was instrumental (after the World AIDS conference in Durban (2000)) in convincing the world that ARVs could and should be brought to Africa and with that, he became the founding father of universal access. He worked together with all the big institutions (WHO, UNAIDS, Global Fund, the Gates Foundation, Open Society Foundation), with captains of industry and with patient organisations to bring health and human rights for those who needed it mostly.

Only last year, he started a new initiative. The H-TEAM, HIV Transmission Elimination Amsterdam, a multi-disciplinary, multi-organisations-involving initiative directed towards a few simple improvements. Although we in The Netherlands follow the US Guidelines for treatment (meaning everybody with a diagnosis should be treated, regardless of CD-4cell count), in practice most doctors do not follow that. They maintain the 500 boundary. However, it is important that people are treated as soon as possible, as untreated HIV can still do damage and negatively affect  your health.

Also, in this country we are doing not so well with our migrant communities. Most of them are tested relatively late. Joep wanted this to be addressed. And finally, Joep was a great proponent of PrEP. PrEP has not taken off in Europe as big as it has for instance in the US. Over the years we came to speak on Treatment as Prevention, I believe since 2009, when I’ve interviewed Joep for our issue 120. I think that his Canadian colleague, Julio Montaner was the agent-provocateur (in the best possible sense) on this. Joep was at the time more involved with global health issues, but had a keen eye on the debates over this already.

Joep was able to phrase his sharp and bitter criticisms with the softest voice, the best arguments and with boyishly playful mockish gleams and little lights in his eyes. He was a man to love and to immensely adore.

Who else of those who perished did you know?

Joep’s life partner Jacqueline van Tongeren, a miracle working woman in her own right.

Pim de Kuijer, HIV/AIDS-lobbyist at the AIDS Fonds, the Dutch HIV/AIDS fundraising organisation, and StopAidsNow! I knew Martine de Schutter and Dr. Lucy van Mens, also victims of the incident, less well.

With the present Pro-Russian Rebels in the Ukraine taking full charge of the bodies, do you think you will have the bodies of Joep Lange, his partner and others returned in time for a Remembrance Service? 

The first few dozens of bodies were recovered to The Netherlands yesterday, July 23rd. I think that the intact bodies will be recovered. They are registered in Charkov, Ukrain, now, and are then flown into The Netherlands where a forensic sciences identification team will try and identify the remains. I believe that funerals will be held later. Remembrance gatherings are already happening. 

You will write the eulogy for Joep Lange for your organization. Was there anything you found that surprised you once you reread it? 

Yes, the combination of it all. What a formidable man he was. And what a loving human being and humanitarian. For instance, somewhere in the early 90’s, one of his patients was suffering with AIDS-rlalted dementia whilst spending a fortune, which he did not have, in a five-star hotel in his homeland Mexico. Joep flew into Mexico with the patient’s male partner/lover, also one of Joep’s patients, and retrieved him and brought him home. He told it later in a way that one could laugh and smile. But he basically had to drug his patient to make him more amenable for taking a plane home and being restored to his house; administering injections in the plane in a way that would not arouse too much suspicion with the fellow flight passengers. 

We have seen many photos and videos of the personal effects of those passengers on Flight MH17 scattered across a field at the crash site. What does it mean to the HIV/AIDS Community as a whole to know a large part of their hope – and certainly the Dutch hope -  has vanished in this way? The void seems enormous at present. Does the hope diminish for people living with HIV or the researchers in the Netherlands and Europe? 

No, hope was not lost. But for me two most important impersonators/embodiments of that hope, they were lost in an inhumane act of terror. 

How do you see your organization proceeding in the future? And, how do you face your colleagues with such a void? 

We will continue our work as a community organization. That work is not influenced by these losses. The projects we worked in with Joep and his consortium will go on. Although it will be more difficult, as Joep (and Jacqueline) were able to bring so many different people, so many different organisations together, dovetailing for a greater cause. It means that we have to find inspiration and strength in our hearts and minds more than ever. 

In a world with so few heroes today would you say the people lost on the flight were seen as such? Were they heroes to the AIDS/HIV movement? 

Joep Lange and Jacqueline van Tongeren were two of my personal heroes. Joep by his formidable intellect and his humanitarian involvement, by his combination of sharp intellect, unceasing energy, of his sharp wit and soft voice. Soft spoken as he was, he did not suffer fools gladly. He was a visionary, catalyst and thought leader, who would bring people and institutions together to leap over boundaries, worldwide. He could be angry and laugh with you at the same time. Jacqueline his life partner, former HIV-research nurse, and more recently head of communications at the AIGHD, one of the institutions Joep founded, was a hero through her embodiment of gentleness and egoless devotion and service to the cause. 

Will the work go forward?

Indeed, yes it will. 

Do you think there will be a legacy of those who perished to possibly bring new people into helping those living with HIV? What do you think the impact will be? 

Well, they already did that! Joep trained doctors and personally oversaw approximately 40 academical PhD-doctoral thesis promotions in the field of internal medicine and HIV, and was currently overseeing 15 Ph-D students still up until now. His legacy is constituted by his medical and humanitarian improvements to this world (combination therapy and universal access). Joep was instrumental in saving millions of lives worldwide. Jacqueline was a person whose legacy consisted of her ‘way of living’, in diplomatic, tactful service to the world. Pim was an inspiration to his co-workers and friends. Lucy and Martine were examples of devoted advocates in the AIDS service organisations. 

Thank-you Peter! 

Extra: the text of the interview in Hivnieuws 120 with Joep.
De noodzaak van een masterplan: Interview met Prof. Dr. Joep Lange

About Peter J. Smit 

Living in Amsterdam since 1986.

Studied philosophy at the University of Amsterdam.

HIV-diagnosis in 2000.

Member of Hiv Vereniging Nederland (Dutch HI Association, the Dutch PHIV membership organisation) since August 2000.

Civil servant for the municipality of Amsterdam; currently vice-chair of the worker’ council of the infrastructure, traffic and transport directorate. 

Pro bono work

Co-ordinator working group for Decriminalisation of HIV at the Dutch Hiv Association, since 2001: criminalisation of HIV was ended by the Dutch Supreme Court in 2005/2007.

Organising the first European Hiv-decriminalisation conference in 2004. 

Member editorial board of Hivnieuws (Hivnews, a bimonthly Dutch community magazine) since 2005.

Board member of the HIV Association managing board since May 2013, portfolio for sexual health and testing and psychosocial health.

Acting Secretary of the executive board of the HIV Association since May 2014. 

About the HIV Association Netherlands, a PHIV service organization in Amsterdam.

Hiv Vereniging Nederland, (Dutch HIV Association) is a PHIV membership organisation in The Netherlands. Founded in 1989/1990, as a merger of two different organisations, one for people with an AIDS-diagnosis and one for people with HIV.

HVN is a community organisation; it has approx. 1.600 members, with 200 volunteers. It has its own bureau where seven people are employed. It is currently governed by a board consisting of six volunteers. 

The HIV Association is working principally for its members, but also with other HIV and AIDS Service organisations in The Netherlands

Photo of Peter byTon Hendrikx, Amsterdam. 

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