_Deplorable Conditions for the Community and People with AIDS


Please fwd this letter from your ASOs and NGOs.
The conditions for PWAs at the Barcelona AIDS Conference were insulting and atrocious, and must not be repeated.


Joep Lange, President
The International AIDS Society
Folkungagaten 49,
SE-102 65 Stockholm, Sweden

Dear Mr. Lange,

At the Barcelona International AIDS Conference, people living with HIV/AIDS were treated atrociously and with disregard. We protest you taking our knowledge while ignoring our needs.

You promote to the world that we are equal participants and contributors to the fight against AIDS, yet, we were marginalized and mistreated. This abuse is unacceptable and will not be tolerated in Bangkok. This is not negotiable.

Our complaints include:

1) In violation of the agreement to host the conference, numerous scholarship recipients were denied entry visas.

2) Community has been excluded from meaningful decision making processes at every level moving our limited involvement backwards, not forwards.

3) In Barcelona, scholarship recipients and people living with HIV/AIDS endured intolerable services and support. Checks handed out were not cashable for several days leaving people without funds. Accommodation arrangements were more than forty minutes from the conference site isolating participants from opportunities of active participation.

4) The "PWA lounge" was grossly under funded, resulting in extremely poor food quality and variety. This restrictive availability is inexcusable, making nutritional requirements and medication adherence challenge. The "PWA Lounge" itself being located in a dingy and dark parking garage was noisy, making proper rest unpleasant and again a challenge.

To avoid similar treatment in Bangkok, we make the following recommendations:

1) That hosting countries of future International AIDS Conferences be held accountable for fulfilling their obligations providing full access and participation for all persons living with HIV/AIDS.

2) That the community must be involved on every level of the decision making process, especially in matters concerning their own well being and that a third co-chair for the conference be established specifically for the community. One of the three co-chairs should be a woman.

3) That the community track is restored to its originally intended purpose to serve as a platform for the community and for people living with HIV/AIDS.

4) That funds for the community are increased from less than 1% to at least 2% of the budget in the future.


Just one of the MANY problems...
Limited "Food" at the PWA Facilities:

< unedible slop

There WERE reports of diarrhea from the PWA Lounge Food consumed (when there WAS food--which was intermittant and extremely limited--even for people needing food, lucky enough for taking medications). It should be noted that the food available elsewhere at the Conference Venue for the Staff and Volunteers and to those who PAYED for food WAS exceptional and plentiful, thus leaving those in the PWA Lounge degraded. No other AIDS Conference since 1991 had such despicable conditions in the PWA Lounge--truly insulting...and a great shame for this Conference.


> Is it possible to add that there was no on-site medical care at the
> scholarship housing, and no staff to orient people at least for the first
> days?

I apologize for taking up list time...but wanted to make it clear to everyone... this was only a "model" letter, written by the frustrated and embarrassed Staff and Volunteers at the BCN Conference on behalf of PWAs. By all means, add additional points of neglect to the letter... and there ARE certainly plenty more! (I am forming my own depressing list of conference failures.)

I heard a first-hand incident that even AT the Conference venue, medical care was lacking: A Spanish PWA woman with an ankle injury was told AT THE CONFERENCE that as long as she spoke Spanish, she should go into town to get medical attention. SHE COULD BARELY WALK! Additionally, I saw two people in need of some medical attention on Friday morning AT the Conference, only to be told the First Aid Station was CLOSED.

This list of FAILURES and NEGLECT of this Conference is extensive.
Even the Community Co-Chair said: "This conference had no heart."
To say the least.

Meanwhile, I worry these experiences are not repeated in 2004 in Bangkok, a Government-Sponsored Conference. Albeit, Thailand is a land of Smiles, it is also a land where 700,000 Thais are living with HIV/AIDS with only 5,000 people currently on ARV treatments presently...where between 100,000 to 250.000 would benefit from drug treatment NOW. Thailand is also a smiling land where the Thai Government agreed on a plan with Burma to repatriate more than 500,000 Burmese illegal immigrants currently resident in Thailand and test them for HIV before deportation. Those testing positive will be separated from the other workers being repatriated. Why am I not smiling??

Not only possible, but true. No staff/vols on site (I once saw 2 vols Day 3 of the confernce)-no orientation materials or maps,
no free shuttle service to and from the conference as promised, and worse of all, no medical staff or even basic supplies on site.
My boss, Sharon Gelman was running around BCN at 3 a.m. hunting down Ensure for a sick PLWHA. If not for one of
Phill Wilson's board members who is a doctor, who knows how this person would have gotten care.

Does someone have Joep Lange's e-mail address? I'd like to write my own letter.

This was my experience as well....I was tired out by the time I got to the Conference site in the mornings from the walk and taking two trains. They could have had a couple of shuttle buses at least in the morning and perhaps left some crackers and orange juice on a table somewhere since there was no food available either.

When I asked about a bus to the airport on the day I was leaving, I was told there would only be buses at 4 a.m. for those who had flights at 7 or before. Actually, I was told by Gemmia, and Ninon of the scholarship committee that I could "take a train to the airport." I ended up taking a taxi to the Airport for $35 as I was not about to try to carry my luggage to the train station and take I don't how many trains to get to the Airport.

The night of the inaugeration I was so exhausted that I took a taxi also back to the University and it was also $35....so $70 of my $210 scholarship money went for just two taxis. I spent approximately 3 hours each day commuting back and forth....

I have the complete e-mail list of the scholarship committee and conference organizing committee and those who participated in the Marathon Meeting in March to organize the Conference...over 100 names.

I would be happy to share it. I would suggest a well organized letter emphasizing the points that have been raised here, but I think it should it signed by at least 5 - 10 of the people who stayed at the Scholarshiip Housing "Villas," 40 minutes out of town.

People who WERE lucky to recieve scholarships, were NOT given instructions upon arrival regarding promised HOUSING. When dates of departures were made, housing arrangements were not covered, thus requiring delegates to pay additional amounts for housing--while having no choice in their departure flight dates leaving Barcelona. The Scholarship Staff, especally NINON, was rude, resentful and antagonistic towards Delegates and People with AIDS and their difficulities.

Conference Scholarship Attendees, housed at a University Campus 40 minutes away from the Conference Venue, were forced to take Public Transportation--one Long Transit Train and a Subway Connection...along with many stairs. More than a few people, from many developing-world countries, were very un-used to Urban Transportation Systems; and some scholarship attendees had Health Conditions relating to HIV/AIDS making it extremely difficult to negotiate walking long distances. The lack of Conference-provided Transportation from the scholarship housing to the Conference Venue--as has always been provided by previous Conferences--was a serious instance of NEGLECT by this year's Conference Organizers.


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