Bukavu final week

Bukavu 2.5

Week for wrapping up…

This week being the last we hurried and finished filming 5 educational videos, all product of Bukavu’s talent. They wrote the stories, hammered them out and played them. These videos will end up in Bukavu as anther tool to educate people about HIV/AIDS.

But what was the visit about? We got to see all the patients from the first groups alive and on their first-line treatment. A strong unequivocal testament that they learned their role in managing their infection. I cannot understate the importance of this finding. Stating with the World health Organization, who proclaimed that in this type of difficult setting, you could only aspire to an adherence rate of 70%. Bukavians proved them wrong.

There are many new “players” in the HIV services arena; many attracted to all the interest coming Congo’s way, mainly in the shape of funding. The central AIDS office has got 7 new Toyota land Cruisers from 2007!

Everywhere you go there’s a new placard with the AIDS ribbon attached to a new outfit that serves people with HIV. To be exact there is a total of 58 service agencies, 39 of those have sprung up since this year, the year that the World Bank funding arrived.

We saw documents from the agencies that were serving before the funding and there is proposal after proposal that is approved, with typically 90% of the initial request shaved off. They still have to deliver on the original proposal, but within a third of the time period and with 90% less means.

All are rushing to deliver these medications and grab the funder’s attention to the flood of funding coming in. Take the Catholic Relief Services, CRS, for instance. The World Food Program, WFP, sets aside 5% of their allocations to people with HIV/AIDS. In Bukavu this is 90 tons of food. CRS takes 83 of the total 90 tons, even though they only have 6 patients under ARV treatment.

I spoke to a patient with cd4 cells at 200 with a history of opportunistic infections. He is a patient with CRS but he is still not on therapy. I asked him why stay there, he said, because they feed me.

I said, but why not to MS, they have experience with over 1000 patients?
Because they feed me.
But you should be on medication…these people don’t have the experience. Why not go to where there is experience?
Because they feed me.

It became clear that the question whether they could manage to take pills on time was answered. What I saw where many services with no people with HIV lending their experience. It is time now to move to the next step…to the decision-making table.

Funders can and should insist on patient-driven advisory boards to make sure their funding goes to where it is needed and not just wanted.

Services should have people with HIV on staff on the same paying scale as uninfected people. Services would gain a great deal also if their staff does what they ask others to do, take an HIV test. On our 5 weeks here we saw 14 HIV service staff take the test for the first time. They all agreed it has made them better at what they do.

The culture of responsibility must be ingrained in people with HIV. To be selfish with the virus is the best way to contain rampant infection rates by sharing it with no one else.

Patients should lend their experience in all areas of HIV services, especially to other patients and show the fruits of excellent adherence to treatment, how to better manage the social issues like disclosure, dating and returning to work.

The community at large needs to see testing for what it is; a tool to better manage one’s health and that of our loved ones.

Take one’s life and it’s health seriously. To prevent infection with HIV all it takes is:

Abstinence

Being faithful after both have tested for HIV. Otherwise it is like using a mosquito net without making sure the mosquitoes are all outside the net.

Use protection. Rape is a weapon in this part of the world. Peacekeepers father babies with the local population. Prostitutes charge more without condoms and ultimately people test when they have symptoms…this is too late. We need to test for behavior, not symptoms to better manage infection and to prevent infecting others due to sero-ignorance.

So with all this in mind we set up a roundtable with people from the 4 groups of people with HIV: Mufariyi, ALEF+, MCFS and GRACE. The priority was agreed to be securing access to treatment and monitoring and the second biggest need was nutrition.

I asked them to come up with ideas on how to do this. Well, if they wanted food assistance, who better than to go to the World Food Program. This is how Bukavu’s first march of people with HIV came about. A clear idea, a clear direction and in three days time, without the assistance of money, food incentives or transportation, almost 200 people with HIV marched in town, loudly asking the WFP for food.

In the end, they got an earful of what was needed to be done. Better organization, clearer ways of how they would manage the help if it arrived and then they would be considered for this nutritional assistance.

They also learned that to get something, you must ask for it and be ready to handle it if you get it. This can only happen when we leave the shadow of stigma and let ourselves be seen as what we are, people living, not dying from HIV.

Bukavu Week 4

Bukavu 2.4

Pep left the team on Saturday to prepare for his next assignment for stern magazine in South Africa and Mozambique. The team felt hobbled as we had such a nice time, specially that we wrapped our time together riding on a UN tank.

The rest of the week was a bit more of the same, but at the same time more focused on what is our purpose here.

Panzi is the hospital that deals with fistulas; the telltale scars of sexual violence. It leaves the female body incontinent and broken, a pain that is hard to convey in words. We listened to 4 women and one little girl recount the same story of rape, abduction and abuse. Only the little girl was not rejected by her family as it was deemed too abusive on behalf of the rapists. Not that the rapists were punished, but the army facilitated her entry to Panzi Hospital.

We met another group of raped women and girls from outside Bukavu. The 6 year old was particularly hard to fathom. The stories have the same scenario…only the number of actors differs and then there is always the personal twist of cruelty and humiliation. Everyone who defends them is killed before them and they are raped amid the carnage with unthinkable endings.

I suggest that when Lisa Jackson’s documentary on rape as a weapon of war comes out, to watch it and understand that which I have witnessed here. I am glad to hear that Time has put the conflict in Congo as its cover story. It should give you a background on the 21st century’s first world war and the chaos people live here.

The oddest player here is MONUC (Mission Organization Nations Unies Congo), the United Nations Peacekeeping Force. In the same place where my diet is limited to goat meat, tilapia and Fufu, they dine on steak béarnaise and Tiramisu. They drive the pot-holed streets in brand-new air-conditioned Nissan Patrols. Electricity, high-speed Internet, jets and high-speed boats contrast to a place that is impassable by road, dugout canoes ply the lake’s waters and people are famished.

This bubble in the middle of all this hardship is guaranteeing that the mission enforces never have contact with those they are here to help. Not understanding your customer is a recipe for failure. Proximity is so crucial for aid to aid those intended and all I see is that many are attracted to the high salary base conflict areas bring to those who wear the blue caps + the adventure of a safari that features gorillas in the mists.

The one concern I have for them is HIV. Seems they have not been briefed on it properly as the number of children borne to young girls from contact with the blue caps show. There have been entire battalions sent back to their countries to break up teenage sex camps. The way the men of one battalion reacted at the news of PEP (Post Exposure Prophylaxis) said a lot.

Not one knew what PEP was; that it is now possible to prevent infection with HIV after exposure. They have no access to PEP. With so much unprotected sex going on between them and the civilian population plus the high HIV-prevalence, it is sad to see that all the money employed by MONUC, none is helping their soldiers and their sex partners from getting infected with HIV.

The one notorious contingent is known to offer $500 to women whose children are fathered by their contingent. Another is known for their envelopes; they leave the girls an envelope that once opened, bears one dollar for sex with the youngest of girls.

They understand the risk of sexually transmitted disease, but it is also believed that chances diminish with young girls. Makes sense, but the word statutory rape comes to mind. It is a mix of their fears and the poverty on the ground that helps keep these soldiers doing what they do. In the end, the protector is the violator and the people have deep mistrust in MONUC and what they are here to do.

I want to point out that not all contingents have the aforementioned notoriety of being sexual predators of young girls. Some are actually are known and respected for not looking for sex with locals and for their friendliness.

What I also see is little contact with the population and an aversion to everything that is Congolese. They drink wines, have sumptuous dinners and watch the World Cup on large screens while the people live under the blanket of blackouts in a land where there is 100% hydroelectric power, so much power, that its electricity is consumed as far away as South Africa.

A dog’s tale…

Elia, MONUC’s communications officer in Bukavu had gone to visit the Uruguayan battalion, which abuts the Chinese compound. She entered and heard the squeals of animals. She found a litter of puppies enmeshed in the barbwire separating the two contingents. The Chinese soldiers were fervently trying to unsnarl the puppies from the barbwire even as one fell through into the arms of Elia.

The soldiers demanded the puppy. Elia refused. They sent a commander to snatch the puppy from Elia. Elia refused. The commander went to the Uruguayan commander to demand the puppy’s return. Elia refused. Understanding her stubbornness, they came back with an offer…another puppy for her puppy.

It was then that all became clear to Elia. She had the biggest and plumpest of the litter and the switch was just to make sure the fat one wouldn’t escape their dinner plans. Yes, they breed 3 bitches for their offspring and it is such a delicacy that they stopped at nothing to insure the return of the plump puppy.

Change is in the air…

As the climate is changing from the rainy season to the dry season, other things are changing in Bukavu; MSF’s oft-announced departure is starting to send ripples to all.

The program was given 5 years to prove that providing antiretroviral therapy was worthwhile in the most difficult settings. Bukavu, sitting in the heart of conflict, easily fit the requirements. In those 5 years, patients would be given medication, local staff trained on delivering HIV services and a rollover would take place, as the national health program would assume the delivery of this service.

Patients have proven to be adherent, local staff has been trained and the national health program is stepping in. Transferring experienced staff from an NGO salary base to a national medical staff salary where chief doctors earn $20 a month is a sad reality to accept.

The national health program can deliver donated medicine, but will charge for lab tests, making it difficult to monitor for most patients. The nutritional and psychosocial components are not part of the national health scheme and money is coming in from many angles, producing a circus of new players that have no other reason to exist than to get their hands on the monies delivered. Afrivir, a clone of GPO, Thailand’s successful cocktail, produced here in Bukavu, is a long way from being WHO-approved, as the fight over who will cover the 2 million HIV infected Congolese is being fought on major foreign stages.

This is all done without patients having any say on all that is affecting their very lives. It is not enough to charge that the NGO’s and national Health programs are excluding our voice, but us patients are limiting our voices in a collective hush.

There are unanswered letters to local and national officials. People are discriminated because of being HIV+, losing work and the ability to send their children to school. Services are not reflecting their needs and concerns as everything is delivered without question or consent.

Sure, many things are being done very well, but to do this the best we can, we must become part of the decision-making process. We are the reason aid is finally coming in, but nowhere is the patient visible, but at the receiving end.

Patient to patient education is the best way to deliver the best adherence. + Counselors bring personal experience to their counseling skills and to promote services such as PMTCT (prevention mother to child transmission) who better that an HIV+ mother with a healthy baby?

Time has arrived to demand our place in the delivery of services, and the disbursement of aid. NGO’s need to utilize this underused human resource, as it is perhaps the best chance for HIV+ people to make a living until the stigma of HIV is won over.

We need to leave the clandestinity of hiding in fear of what may happen as nothing can be worse than what is happening today. It is high time for a PVV summit. It is scheduled for Friday afternoon. We will seek common ground and seek direction and plan actions. It is time to coalesce to unleash power…

I am happy to say the meeting took place, voting unanimously to seed securing access to treatment as the most important issue to fight for and a plan of action.

They want inclusion at the decision-making table by creating a community advisory board, at MSF’s transitional plans and at the PNMLS (Programme National Multisectiorelle Lutte contre le SIDA). There is a committee to find work and food.

I need help to connect them to TAC (Treatment Access campaign) in South Africa and in finding contacts in the World Bank and Global Fund to find out what has been given, to whom and for what so that the patients can get all the information necessary to make their claims to the appropriate parties.

All leads and contacts will be appreciated.

Ps a major headway was made Friday in Bagira. Yvette, Maman Josephine and I disclosed our status in front of over 100 incredulous people. I did my usual live-test and then came a man from the crowd demanding that Yvette be tested. He said she was too beautiful to be HIV+and he wanted confirmation.

To everyone’s surprise she acceded and became the first local person to do a live test…

It was recorded on radio Okapi and chosen to go on National Radio this coming week…this is like getting a spot on Thomas Gottschalk or in 60 Minutes…

On a personal level the team was very happy at Sergi’s 2nd place prize in Madrid’s Film Festival for his documentary on Sierra Leona’s amputee football team, “Against Gravity”. Check it out! And many congratulations to our director, Sergi Agusti.

Bukavu Week 3

Bukavu Week 3

Saturday

Full week, full team
Pep Bonet and David Arasa have joined us this week. Pep is again at his best taking pictures and David is lending Sergi a hand with the camera. Pep is the photographer whom I met years ago in Zambia. It was through his interest in the project that we got to make the documentary, “Back to Life”; so it is fitting and thrilling to have him here with us.

Not 30 minutes after traveling 4 days to get here…Palma de Mallorca-Barcelona-Amsterdam-Nairobi (cancelled, rerouted)-Dubai-Nairobi-Kigali, we go off to a sensibilization for youth in Kadutu.

What are the signs of AIDS?
Skinny
Bad skin
Straight hair
Tired
Diarrhea
Skinny

Luc and Elysee, Two of the youth program coordinators had taken the test Friday and they agreed to be live-tested so people can compare against my test results. Elysee, a lanky 27 year old was perfect for our role play.

“Which one of us do you think has the virus? Elysee or Carlos?”
“Elysee” shouted the youth gathered in an open courtyard where tables are usually busy with checker and poker games.

Who thinks Carlos is negative? And all hands went up… Time for a live test.

The tell-tale red line came across the rapid test soon after my pricked finger dropped a few drops of blood. No line came in Elysee’s test. He of the skinny arms, not I, was negative. I, not he, was positive. The youth couldn’t believe their eyes.

The message was clear,
Les aparences font tromper (appearances can fool).
Il faut se proteger (Protect yourself from HIV).

Abstinence.
Be faithful after testing for HIV.
Use protection.



Monday.
We meet Joseph to see him take his medications. He is in a serodiscordant marriage. He became sick in 2003, tested positive. He prudently had his wife tested and she tested negative. Since then, they have used protection and they are still sero-discordant.

He claims getting tested saved his life. “Most people here avoid testing because they don’t want to get bad news. But for me it was the contrary. Testing saved my life. Had I not tested, I wouldn’t be alive today, my wife would be probably also be infected.”

I met Joseph back in 2003; he was selected to be among the first patient group getting antiretroviral treatment. Back then the goal was to demonstrate that people living in conflict areas deserved these life-saving medications and the biggest hurdle was adhering to the treatment.

I can say confidently, that goal has been reached. Patients I met in 2003 are all alive and are mostly on their fist-line treatment, proving their adherence.

Patients were asked to share their experiences to other patients and the community at large. That has happened unevenly, but it is happening. But the are many questions that are now pressing.

The pills are being brought free of charge by MSF. This is a finite program that should be rolled over, in theory, to the national health program. Pharmakina is making antiretroviral, but have not been WHO approved, making them absent in the viable solutions to deliver medications. If approved, who will pay for them?

The one person who is absent at the decision-making table is the patient himself. The United States had ACT UP that took its place among the decision makers and veered the slow-moving drug approval process to parallel trials, cutting the time a drug was approved, among its many accomplishments.

We sat at the table to make sure our needs were being met through legislation, funding and delivery of services.

In South Africa, TAC (Treatment Access Campaign) took its place at the table turning over a government who denied HIV and patent laws, and brought access to antiretroviral to many.

In Congo today, this is the missing piece. The money is here, the local service providers have the know-how and the pills are here. But the biggest hole is the absence of PVV’s in the tables where all decisions are made.

The week was full of presentations to young girls; medical students and we were able to follow six girls who wanted to get tested for HIV. We are promoting this practice to make sure providers go through the test process themselves and be better advocates for HIV.

We visited Congo’s Fistula Restoration Center, Panzi Hospital. It is a beautiful place tucked away from the chaos that is Kadutu where many women, 380 this week, are being treated for vaginal wounds. It is a place that is impossible to leave with heavy mind as one sees and listens to women and girls tell their stories of rape.

“My intelligence abandoned me and they kept raping me. I have one question, is there any medicine for these emotions I have? I need medicine for these emotions”, said one woman to me.

The little skinny girl with a disheveled look was taken by a military man; raped and left with a fistula so severe she is still incontinent. This situation leaves them scarred and visible for others to see that she cannot control her bodily functions. This is a daily event at Panzi, the rape center.

They don’t talk among themselves as there are Rwandan women there who mock them as most violence come at the hands of their Rwandan men. The fortune to meet and talk with others like them is lost on ethnic divisions that continue, even here.

We met a New York City girl, Linda Jackson, who is doing a documentary on sexual violence. She said, nothing like the stories she’s heard here. Women raped in front of their children and husbands. Then in turn watch their children and men killed. One said that after they ripped her man’s abdomen open, they cut his arm below the elbow, handed the hand to their children and said, say goodbye to your father.

This place is not for the faint at heart and after the brutality they must cope with pregnancy and disease. Most can never be mothers again or ever in the case of the 12 year old. They are left battered and shattered with newborns to tend and possibly infections that will last a lifetime.

But the woman asking for medicine for the “emotions” told me clearly that once they found shelter and food, the biggest pain remains inside.

We ended the week and Pep wrapped us his visit with a ride through town, at night, on patrol with the UN Peacekeepers. It was a thrill to ride among heavily armed, uniformed, mustachioed Pakistani soldiers. I got to ride in a tank that had as a centerpiece a big cannon with huge bullets hanging from the side. Next week I will talk some more about MONUC and how people perceive it here.

The filming is going on, not without bumps as we were stopped in the middle of shooting an educational video by Congo’s CIA, the ANR.

They claimed that the permits we had were not valid enough. Seems like when you think you have covered all layers, there’s yet another one. I am happy to say that our friend Laurent talked to the director and we have our new permits as of one hour ago.

Ps. This is David’s first “reality tour”. He speaks with girlfriend Tere back in Spain almost daily. It is difficult to explain what we see to those who haven’t been here. In between the police roadblocks on behalf of the only insurance company in the country(they take 300 dollars a year, or your car... and they never pay out) to we filmed in a harbor market where there is a prostitue village with hundreds of people he said to Tere...

“I get the impression we are saving lives”.

Bukavu Week 2.0

Sunday.


We are staying in Delicias, Mama Kinja’s new joint.

If you red the Congo stories, you may remember that our team used to love eating Mama Kinja’s goat meat. This time, she has opened a new restaurant called Delicias and they have on top of the restaurant apartments for rent.

It is a humble and comfortable 2-bedroom apartment with a living area and balcony across the street from the Peres Blancs (catholic order) and the local army head barracks. Further on the view is of Lac Kivu, a water filled caldera that still burps methane bubbles; a nasty gas that keeps its waters stunted in potential.

We get breakfast as part of the deal and you can see families in their Sunday best going to church, children on their way to school, people carrying goods to sell in the markets and also squads of joggers brandying Kalashnikov’s and bazookas, plus the ever-present, armed and always pointing weapons, Blue Helmets (United Nations peacekeepers) from Pakistan, China and Uruguay.

Sunday night we were sitting in our balcony and all of a sudden Sergi pointed out the light on the side of the building had hundreds of grasshoppers swirling round the hot bulb. The air was thick with those flying and the ground started filling up with many exhausted from all the frenzy. They would rub their wings and make sounds like crickets, this coupled with a downpour, made the spectacle almost surreal.

Soon the street started to fill with people carrying bottles, swooping on the ground to trap these creatures.

Sergi asked, what do you do with them?
We eat them; they are delicious and very good for the bones.
I replied, they have a lot of protein,
They are good for the bones; they have a lot of vitamins.

The insects started to zoom into our balcony like kamikazes. In no time our balcony’s walls and floor were filled with crawling bugs. Sergi would let out a scream a la Tippi Hedren in “The Birds” every time they hit him; it was a riot of nature and man.

As the bottles started filling up, one proudly said, carrying a filled regular Pepsi bottle (33cl, 12oz) I have here 2 dollars worth. I will bring this to the other side of the mountains and they will pay 2 dollars. They are very hungry, he said smiling as he had just stumbled upon a winning ticket.

How do you eat them?
Grilled. A little bit of hot oil and voila! But not the brown ones, only the green ones are good. The brown ones, they are eaten in Kinshasa.

And that is how this animal, known in my country as the symbol of hope, is a snack in this part of the world.

In the morning Sergi and I were having our breakfast in the restaurant beneath. We looked around to see many brown grasshoppers on the windows and sills. When we turned our eyes to the floor, it became apparent that those little sticks littering the floor, were legs, grasshopper legs… green ones, of course.

Bukavu Week 2.5

Friday.


First day of filming. It is also the first time 6 veteran AIDS workers are getting tested for HIV antibodies. It all sprung out of a presentation where is said I asked people to do what I was willing to do myself. If they were promoting VCT services (volunteer counseling and testing), they should know the process themselves.

Testing here is done quite quickly. A rapid test from one maker is controlled against that from another and if both coincide, a result is deemed conclusive. If not, another one is done to be the tiebreaker. In this case a Determine test is done in tandem with a Unigold. If they show different results, a Western Blot is done.

They are now also looking at HIV strains. Most are HIV-1, but there are some HIV-2’s showing up and some carrying both. Too bad they are not doing demographics to see who is carrying what.

In about 30 minutes you go from giving blood, to receiving your results. One by one they gave, and came out with the good news that although they have had risk behavior, they all came through with negative results!

And now after years of preaching others to test, they have walked the way themselves. It has clearly enhanced their ability to do their work and get a new sense of pride. Pride that they have done the right thing and they can be a part of the movement to know your status and keep it from changing.

Bukavu Week 2.4

Thursday

We meet vivianne, who is working on women’s issues around HIV. We met back in 2003, when she had a lot of family members dead or sick as they waited for the medicines to reach them.

She looks great, has since had a third child and is focused on women and AIDS. Unfortunately, she tells us the same story. Sent a proposal to the PNMLS, who is channeling the World Bank money, to counsel and test women for HIV, give them prevention tools plus a sensibilization component to reach 30,000 women.

Her submission requested $10,000 budget. Her application was accepted, the amount reduced to 1/10 minus the 10% administrative fee. The goals were kept intact, but the time to deliver these numbers was reduced to three months. She received $929,24.

Good news for the community is that in spite of this she over-delivered on all the program goals. Here in Bukavu it is not hard to reach goals, the hard part is to get the proper funding.

We go out for a “sucre”(soft drink) and we stumble upon a youth group playing pool. Soon, talk turns to HIV. They talk about appearances and I ask if they think I am. Soon enough Vivianne is testing me for HIV in front of the pool table.

One young man asked angrily, what is the point to test or get treatment if we have nothing to eat?

Good point. But the reason to test and get treatment if needed is to be alive. Healthy people can access food much better than sick ones. That is the point.

Time for lunch, but before we stop by PNMLS to say hello and profit that vivianne can help introduce us to this lair. And what a lair this is…security guards; complex entry protocol (akin to seeking an audience with an ambassador) impeccable gardens greeted the waiting area. Finally, after much movement by the security detail, we were invited in.

The 4 brand new Toyota land cruisers stood out in the garage, the office of this man was like stumbling into Wall Street. Mahogany desk and library, leather executive chair and opulence that matches nothing we have seen so far.

PNMLS was put in place to channel the monies arriving in Congo to deal with the AIDS crisis. PNMLS’s president is Kabila himself(Congo’s president since the assassination of his father, Laurent). Those in charge of the regional offices are versed more in their relationship to Kabila than to HIV/AIDS. It is sad to see the international community giving with such wanton. Who is auditing this? It is an outrage that in a land where doctors earn $12 a month, Congolese programs would accommodate such luxuries to deliver the help intended for PVV’s.

Proposals are accepted, monies reduced, deliverables maintained. Is the global fund being lead to think they are doing their job as deliverables are always exceeded? Do they know it is being done at a fraction? Are they aware that of all 58 associations funded by PNMLS, 39 formed this year alone?

It reminds me of a time in Geneva, back in 2003 where the Global Fund was meeting there came out as the fourth point in the agenda that all trips in excess of 6 hours be upgraded to business class. I bided my time and then came my turn to speak. I said,

The money it takes to bring the pills to the patient is the money left for the pills.


Ps. I have not been invited to another Global Fund meeting since.

We still had a meeting to go to. This time a sensibilization program in the heart of Kadutu, Bukavu’s South Bronx.

Our friends told us that we were going to the heart of it all. There are maisons tolerance (bordellos), rappers, musicians, rastas and children everywhere. The pathways cut a line among the slow-slung homes bisected by streams of human runoff. These ended in a spectacular waterfall where children played and women washed clothes?!

The group brought the light I always seek when I go on mission. That is when I see locals take initiative. They understood the goals and made their own way to reach them.

They focus on youth and have the traditional game hall where youth hangout, playing board games, billiards and watching videos. Understanding their target group looks up to musicians, Rastas and football players, they have created the best programs I have seen so far.

There’s SIDA-Disco (AIDS-Disco), a party where musicians play, people dance and sensibilization is done. The football program where they do outreach at football matches, providing condoms and literature for the game-obsessed youth of Bukavu.

Another program is for young men and their Cocotte (girlfriend). A busload of young, coupled youth are taken outside town to Plage 18Km, a beach on Lac Kivu where they can enjoy the lake, listen to music from local musicians and learn how to stay on top of the AIDS crisis. It is located exactly 18 kilometers from town, a great incentive to remain to listen to the educational component as there is nowhere else to go.

In all, it shows how people are adapting their ways and message to reach those vulnerable. To see Bukavians stepping outside given parameters is where the light starts shining. The light that with local initiatives and creativity we can all reach the same goals. The goal of pulling the brakes on the rampant infection rates we see here.
Ps.
For every encouraging sign, there is always something that makes you hairs stand on end.

Changiliya
Bukavu’s newest fad. No, it is not a new dance or music genre, but the new terror spreading through the slum of Kadutu.

Changiliya bat records(Changiliya is breaking records)

Sniper at 12!
Says one young man to his posse of 5. it points to the position of the next prey.

They like to target young girls. If one catches her looking, he starts the flirting rap. The rest walk away leaving the impression they are going to leave their friend alone with his new “love” interest.


He is now alone with his prey and lures her to a ghetto, an abandoned shack, used for illicit liaisons- meaning any sexual contact outside marriage.

Girls are always taught that they must never show overt desires. Men are taught that is them who “drive” the women. So begins this ritual where the girl is hesitantly driven to this ghetto. Once the sexual rapport is underway, the second guest arrives…catching them in the act, he claims the right to get some himself or he will tell what he has witnessed..

She will soon find out that the number of visitors to this shack will not leave her until they have made the chain to their satisfaction or when she collapses from the assault. Their trademark is to leave a river of sperm spewing from the girl’s femininity. Then they have done the Changiliya.

This girl, once, is now a battered soul unable to denounce, as it is cause enough to be thrown out of her home. After all, what was she doing going to a ghetto? What she can’t avoid is the young men talking…that one there, she’s been done in chain, she’s had the Changiliya.

For these girls, the next step is usually to seek solace with other women who have been through the same…the houses of tolerance where she is picked up to baby sit the prostitute’s children for food and soon enough, they will be told to “work” for their food.

For these men, they get notoriety for having done the Changiliya to many and they get to choose a virgin to marry and fulfill the promise that a woman must serve her man. Fetch wood, cook, clean and never refuse their man’s sexual advances or she is out the door.

It is well known in these great lakes that rape has been used as a weapon of terror, spreading disease, heartache and displacing thousands of women as they are now deemed “used and dirty” by all. Changiliya is the urban evolution of this practice.
and it it breaking records...

Bukavu Week 2.3

Wednesday

We have permit! After much time spent waiting for nothing to happen, we met the mayor of Bukavu and 10 minutes later, we had our permit. He invited us to take us personally to his village, Katana and do a sensibilization there. Word is getting around that there is a PVV wiling to do a live test and he is excited to show his people.

We go back to Bagira and meet a group of young mothers who are watching African-made HIV videos. They are well done with stories that captivate the women, most of which are nursing their babies as they watch in the dark.

It is my turn to do testimony. I was infected in ’92, the year I fell in love. I was fidele (monogamous). As the ABC’s of prevention are disseminated, (Abstinence, Be faithful and Condoms) I want to add to Be faithful-after testing. Because faithful without a test can be like using a mosquito net with the mosquitoes inside.

If you don’t have actual information about yourself and your partner’s HIV status, you are taking away the protection being faithful can bring.

It all starts with an HIV test. It should be voluntary, in confidence and with counseling, before and after the test. One lady looked at me with the sad eyes of someone who’s sorry about another. I made a remark on it.

Don’t be sad for me. I am fine. Of course, it is not always easy, but I am living instead of dying. You should be sad for those who don’t know they are passing the virus to their children and partners. Sad for those, that in spite of access to life-enhancing treatments, wait until it is too late, leaving children in Africa’s most vulnerable place, that of an orphan.

Time to do live test. The test counselor, gloves in place, cleaned my finger, took a lancet and pricked it. I was using a determine rapid HIV test. In a very short time the first box would turn pink from my blood passing through and if positive, develop a dark red line. Then it would go to the second one, the control and also turn pink followed by a red line to confirm the test was reliable.

They go to see the process and soon 12 mothers walked out of the center; appointment cards in hand and walked over to the VCT (voluntary counseling and testing) clinic. They were ready to take things into their hands and offer themselves the benefits of knowing.

They had asked me what to do about their men, who refuse to test. Well, you have to be responsible for yourself, lead by example. After all, you cannot pass a virus you don’t have. Hopefully, once they see you do it, they may follow. But this is about you, not him.

We also talked about PEP (post exposure prophylaxis). A gift from God in this land of sexual violence. If you take it soon after exposure, it can help stave off infection. People say come before 72 hours, I say, come as fast as you can. The less time you wait, the better. And thank God, there is PEP in the two MSF clinics.

Ps.
What’s up with the World Bank funding for HIV/AIDS?
In sharp contrast with 2003, there are signs everywhere about HIV/AIDS. Also dotting the cityscape are new offices of organizations doing the work of sensibilization of HIV/AIDS.

What you don’t see are programs being done. As we visit association after association, they all complain that after the initial funding, nothing else comes through. On manqué le moyenne (we have no resources).

It is curious that most is funneled through a national program PNLS (Programme National Lutte contre le SIDA, national program in the fight against AIDS) and PNMLS (Programme national Multisectorel Lutte contre le SIDA. From there the funding seems stalled. What is happening? I will make it a priority to find out and report back.

PVV’s are complaining of not wanting to be treated like merchandise. In the effort to keep and build “numbers”, Associations are trying to keep clients by preventing them from accessing services like MSF’s antiretroviral program, the only source of medications for those who can’t afford it. Imagine!

What is missing from this new picture is the participation of the actors who have been working since the beginning of the fight against HIV/AIDS. Seems like the government has put its own people to make sure funds are channeled the way they see fit.

Bukavu Week 2.2

Tuesday.

Still no permits and we leave that aside and go to Bagira, home of MSF’s HIV clinic to meet the patient groups. Sergi and I left Evariste at the town square and walked over to the clinic, greeting people along the way. Many would greet me by name…after three years, they still remembered.

My heart quickened as I go to the clinic, hoping to see the patients I met back then and hoping to see them in good shape. Mama Josephine was the first one, and what a sight! Strong, happy and very much alive. It is clear she’s doing something right. I start asking how her evolution has gone and she shows me her patient card. Cd4 in 2003, 24, today it is 530 and still on the same regimen.

So many naysayers said that in Africa you would have to switch regimens due to poor adherence and resistance and here is a group of 1200 patients on ARV’s, most on first line treatment and all adherent.

They still have the patient entry system in place, candy-pill trial and all. They share their experiences with patients starting treatment and they have formed their own group as PVV’s (Person Vivant avec le VIH/SIDA, people living with HIV/AIDS). Since the arrival of money from the World Bank, they received funds to help their children and those without parents, get their school dues paid.

Teachers have not been paid by the state for the last 8 years, even though their official salary is $10 a month. So they get their money directly from the children they teach, $45 dollars per school year and a child can access learning.

Unfortunately, these monies, although promised have not been given in full. It seems to be a repetitive story of money arriving, but not in full. We all know funding is time-limited and must be disbursed within a fiscal period, so where is the rest of the money for the funded school fees program?

I won’t get into this, but it is a sad reality to see the sprouting of so many “sensibilization programs” of groups that have no experience or connection to HIV/AIDS work being funded and those who do have the experience and capacity are not benefiting from this largesse.

On the walls are posters showing the number of members, classified by gender and age group; the number of people, the number of deaths in 2004 and for 2005. 2003 was the start in treatment and the PVV group is for those under treatment. In 2004 17 members died and 5 in ’05.

Total123
24 men
99 women of which 60 are widows…

It is clear to see how the “cocktail” has impacted this group of people. It also shows a gender disparity in accessing treatment. Maybe it is cultural for the man not to accept weakness as in getting care for their health. Maybe it is a result of conflict that men remain in the jungle, but for those in treatment, in spite of all the limitations, getting treatment has clearly enhanced their lives.

Off to a youth sensibilization center, sponsored by Halt SIDA (Stop AIDS). Here is where I start witnessing the emancipation of the activist in Sergi. Three years ago, we met on this very place. He was jovial, respectful of the culture and very interested in the subject. As time went on, he understood it better and started making opinions.

He understood the urgency of HIV/AIDS and believes, like myself that it will not get better unless PVV’s move from being the problem to being part of the solution. And so, before my eyes I am seeing the activist in Sergi come out. Provocative, sensitive and strong, he addressed the young people on all subjects; testing, condom use and personal responsibility.

We definitely have a new foot soldier…so good that there are 7 people so far that responded to his call to test and are willing to share that with him and his camera. He is interested in showing the process of deciding to test to find a universal story and share this with others and help get people to know their status.

Bukavu Week 2

Monday

Monday was a frustrating day, we waited all day in vain for the permits as the governor was not available and our passport visas not complete. In the late afternoon, we were asked by friends to join them in Negrita’s, Bukavu’s dance hall.

It had poured minutes before and we followed a mud path by looking at the reflected sky on the puddles. The only way to walk in this mud is looking down, as you never know what you may find a step away.

We met Mambo, John and another colleague. They were celebrating having finished a particularly long day. They had started at 5 to finish a report. Nothing out of the ordinary, but since electricity is rationed here; they have to work around the juice.

One is an expert of content, the other translates into English and the third one types. Very much teamwork, and they got it very much done. Now it was time for us to talk about what to do next. They have a slot to present in the aids conference Toronto and we started a brainstorm. Serge came by, after finishing his management exam, followed by Monday who after work, visited his pregnant girlfriend and Tete who stopped on his way home from work as a doctor in Panzi Hospital.

Soon ideas started to materialize and soon after feeling disoriented by all, it all came up clear. Our wish to come film their idea is coming to be. They want to make a video about faux croyances (false beliefs) and they want to film a drama from Tete tentatively titled “precheur, vous me a toue”(“preacher, you have killed me”)…

Suddenly, the swarm of grasshoppers, the symbol of hope, makes perfect sense. And I thought it meant we were getting our permits…but no, we got our work cut out crystal clear!

Ps. the electricity shortage is real due to aging infrastructure. It is also many times due to the low or inexistent wages. You will see many electricians working on poles in the morning. Oddly this is the time when many businesses lose their electricity. But a simple phone call to the same person who was handling the wires in the morning, plus a bribe and the juice starts flowing again. Congo electricity seems to work under a “We keep cutting lines and you keep paying” policy…

Bukavu Week1

“Ils sont assassins, gent de mauvais esprit” , Evariste…
(They are assassins, people of evil spirit)

After a 5 city whirlwind tour of Europe, Sergi (film’s director) and me embarked on a three day trip that took us from Barcelona to Congo through Amsterdam, Nairobi and Kigali until our destination in Bukavu, eastern Congo (formerly Zaire). We were met in Kigali by our driver, Evariste who got us started in understanding the context of the conflict of the land that holds the distinction of the 21st century’s first world war.

I know, it is a war that no one has heard of, even as countries as Spain, Germany and others are sending troops to monitor the upcoming elections slated for the end of July.

He was reticent to stop along the way…it was a 5 hour trip and we wanted to make a stop to stretch and get something to drink…he sputtered, they are all assassins, gent du mauvaise esprit (people of evil spirits. Anyone who watched the film, Hotel Rwanda, can understand what he meant. What people don’t understand is the war they are raging is against their colossal neighbor, Congo.

800,000 Rwandans were killed in 100 days in 1994, but 4 million have died since the inception of the new century and Rwandans are playing a major role in keeping this region destabilized. And as Mobutu Sese Seko once said, “when you see a dog on a tree, you must look around to see who placed him there, because dogs can’t climb a tree alone”. Apt metaphor in trying to understand how such a small country as Rwanda plays a major role in keeping this region of Congo in constant terror.

The spoils of war are evident once we reach Bukavu. They wage war from the dense jungles of the great lakes region. Securing the mineral rich region while terrorizing its inhabitants. The rape centers are full, fistulas are a common malady affecting women as young as 4 years old. They use sexual violence as a weapon of mass destruction.

In May 2004 a general was imposed by Kinshasa by its young president Kabila. His underling was a colonel not too happy with the new arrangement. The frictions led to an uprising and soon war broke out in this former Belgian lakeside resort. A Rwandan refugee rebel leader soon joined the colonel and started pillaging his way from Goma in the north on his way to Bukavu.

Their system was efficient. Roadblocks to rob and kill those who opposed the rebels. They started taking the women to help them in this pursuit. One must understand that the men of this region cannot do much without women. Women must cook, clean, launder. Fetch wood and raise children.

Once women are raped, they are rejected by all as used and dirty disposable beings. In this one village they took many women. Those left started to sleep away from their homes to evade the ghosts of the night. Soon these ghosts, thirsty for sex and working hands took to these sleeping centers.

When the rebels came to the centers and found only men, they in turn were raped summarily, the lowest form of denigration on these great lakes. But men don’t cook or clean, so they pursued on with iron-tipped spears, poking the forest floor until feminine screams betrayed their hideout.

Those who evaded them seeked sanctuary in churches. Sensing this, the rebels went to church, killed the priests and started ringing the church bells, beckoning the women to unforeseen carnage…the violence is unimaginable and the methods cruel in their simplicity and effectiveness…

This happened in light of a UN peacekeeping force in place since 2001. An in one moment, an agreement was etched out and the Rwandans rebels retreated without punishment and left behind the worst scenario for women. Women who are raped are seen as dirty, used and worthless. They are separated from their children and all family. Their bodies are left with fistulas so severe they are incontinent for life, cementing their stigma as dirty, used and worthless.

Still, the Congolese people, so used to exploitation from Arab slave traders to the rule of the Belgian king Leopold II and now the thirst to control the diamonds, gold, uranium, coltran that these people walk over. Neighboring countries seed instability to pillage these riches, denying its citizens the wealth that lies beneath them.

For the women of this region it also carries the legacy of HIV. Sexual violence done en masse has lifted seroprevalence from 2% to 20 % in a little over a decade. Orphaned children, broken homes and cultural mores keeps pressing them further and further into despair.

The rape center in Panzi Hospital has 160 women in its wards. Their center for restoring health to women’s sexual organs is fast becoming a leading center helping women regain control of their bodies, a sure blessing. Now it is also attempting to re-educate their families to understanding that raped women are victims of this world war and should not be punished further by rejection, stigma and discrimination.

These efforts so far have eluded success as most of these women turn to prostitution and continue on the spiral of disease and shame. It is not easy the work that needs to be done, but it is being done.

Thankfully, Bukavu has antiretrovirals. The main source comes from MSF (medecins sans frontieres) who started delivering them in late 2003 to show that conflict areas should not be excluded from access to these life-saving medications.

The antiretrovirals are even made here, in Pharmakina. It is called Afrivir; a combination of Lamivudine (3tc), Stavudine (d4t) and Viramune, all compressed into one pill taken twice daily. The price is 20 dollars a month, making it the cheapest cocktail in the world. They brought a WHO-approved formula used with much success in Thailand. But the WHO does not approve Afrivir, Thailand’s clone. They want them to start a process as if it was starting from scratch. So in Pharmakina, these life-saving medications are sitting in boxes waiting for time to match their expiration date.


We attended a workshop training new peer educators. It was a sight to see people from so many agencies, a result of funding like PEPFAR and Global Fund. Their main goal is to get people to test for HIV. I asked them if they had been tested, half answered no. I said you should ask people to do what you are willing to do yourself. Only then can you command the authority and trust in the message you give…don’t ask people to do something you aren’t willing to do yourself.

Sergi also spoke of his experience of being sero-ignorant and the process he took to know his status. His words were so soothing that in the end 6 of the untested educators want to test next week and have the assurance of me being their counselor post-test.

I urged them to exhort people to test for behavior and not symptoms. This way, if the news is bad, there is a lot more to do when compared to coming in with symptoms. I make a point of only speaking before people who have access to voluntary testing, counseling and medications, specifically antiretrovirals.

On another subject, we are still trying to access all permits to film. It seems everyone thinks we are a Hollywood outfit and are trying to extract money for everything. So far we have met with the border authorities where we have seen our monies go directly in their shirt pockets, security forces that are demanding 50 dollars a week per person and the mayor who told us; see the governor. This is slated for Monday…

Until then we have a full week ahead, hopefully with permit in hand we will start the sensibilization using the test kits we are waiting to arrive and our first visit to Bagira where I will see the patients who debuted the pills 3 years ago. I can’t wait for the week to begin…I know I am supposed to say weekend, but I am happy to feel useful again…

…As we returned from one of the many meetings with officials, we stumbled upon traditional dancers. They were carrying iron-tipped spears; animal fur wigs and traditional skirts and dancing what seemed to me like “Paso Doble” (Puerto Rican dance). We stopped, and as being the only two foreigners, we were asked to join. I, of course, refused unless I was given the full regalia…above all I wanted to get the wig on as I have not had hair in over a decade…the best part of the dance is that after four steps either way, you stop and swing the fur wig with a head snap…Fab!

kongo stories

Congo Week 1

A beautiful day…

Today was the day of the third visit of the October patient group. It was my first with them under ARV(anti-retroviral) treatment. As I arrived at the clinic, many other patients were there. One was at the entrance complaining of different ills and aches and in the waiting room was a lot of new patients. Seems like the prediction of increase of patients is materializing as they are finding out thought he grapevine that we offer life with HIV.

At last I meet the October group. A group I had met in June and we had talked so much about starting treatment and doing it right to get the best outcome and it was our time to check if everything was going to plan.

There were only 6 out of the 7 patients and I was told the 7th was unable to walk to the clinic. Immediately I set out to fetch her and brought her over to our patient support group. They were all so happy to see her and greeted her with clapping. This clapping would be heard throughout our meeting as we cheered one after the other who felt better than when they started.

People are gaining their appetites, including the 7th patient. They are showing side effects, but it is no t bothering them. They are concentrating on the positive changes like the universal return of appetite. It must be stressed how big a deal this is for us infected with HIV as the biggest sign is weight loss and without appetite this is the inevitable.

We talked about the 8th patient who didn’t make it to the ARV program, as he died two days before we started. They said it was a design by god, as if he had died after starting ARV’s they would have felt it was the ARV’s who pushed him to death’s door and would have challenged their belief in the ARV treatment.

They expressed sadness over it, but accepted it as God’s will and are happy that they are better now. We did the pill count and all 7 notched up 100% adherence! Even with nausea, diarrhea and vomiting, they have taken their pills and are now reaping the benefits.

We talked about seeing one of the babies showing a rash all over her body and shared on that. We talked about how the 7th patient felt about being picked up by the MSF car and how that disclosed to the community that something was going on with her. She replied that her health was more important than anyone’s opinion. You go girl!

We asked how was the nutritional help faring and they all agreed that it was a great help to get the soy meal, corn meal, oil, salt, sugar and dried peas. I asked them what they supplemented this diet and most responded with vegetables and cassava leaves. Seems like the only source of protein are the dried peas.

We asked each individually a set of 20 questions relating to symptoms, both emotional and physical to gauge how body and mind relate to their well-being. Surely enough those who were having trouble finding sleep and expressed sadness were also the ones dealing with the most bothersome symptoms.

To wrap this up the patients are visiting each other outside of clinic days to lend support. They want to help out in anything they can to further the program’s reach and scope. They are willing to mentor new patients and hold their hands into this venture of hope and responsibility and they are doing it as a family. Concentrating on the benefits even as they are experiencing side effects. They have adopted the triumvate of taking their meds, making an effort to eat better and keeping a positive attitude in their life.

Our roundtable scheduled around their waiting time gave us the opportunity to check on one another, give each other support and information. The clinic was never interrupted and we were able to give them medical care, emotional support and continuing education on the management of HIV disease. What else could we ask for?

It is something we have been working on for months and it’s beautiful to see it working seamlessly and how we have delivered such complete care without requiring more time from staff or patients. Bagira’s HIV clinic, 12 points!
































Congo Week 2

WEEK TWO…


Last week I reported that out of the 7 patients, 2 were still not well, but that they had had their appetites return. This week patient 6 is much better and out of the hole and patient 7 was walking much more than before. All had 100% adherence to the ARV treatment and Patient six had a new reason to feel better; she has gotten engaged to another patient in the October group!

We’ll soon be toasting their nuptials with the ARV “cocktail”!

Group two, or the November group had their candy pill count day and start of ARV treatment. We counted the candies left in their pill bags and all had taken them improperly. Out of 9 patients, 7 took more than they should have, 1 took less than they should have and another didn’t show up in time last week to be part of the candy pill trial.

I was fuming! We went through their HIV/AIDS knowledge and again, they were fudging through the answers. This was no humble group. They ask for money, for transportation, they show up when they do and it’s all give me, give me, and give me…

I voiced my anger at their irresponsibility. Explained to them that this was to practice taking the real pills. If these were real pills, 7 would have been intoxicated by the higher doses they took, another would have been on her way to develop resistance by having taken less than she should have and the last one, well….

One of the medical exclusion criteria is active tuberculosis. Those testing positive for active tb, can enroll after completing the first stage of tb treatment that lasts two months. One of the patients was going to get the bad news. We reminded everyone in the group about this exclusion criteria and that it is in the best interest of the patient as one of the drugs in the 1st stage of tb treatment is incompatible with the HIV treatment.

After a brief meeting with the medical team, we came to the conclusion to postpone starting treatment until next week and to repeat the candy pill trial. The patients were told that next week the ARV bus would be leaving with or without them. Those in time and those who showed progress in their candy pill trial would get on the bus.

Clearly they have taken for granted the privilege of being among the first chosen. There are so many who need to get started on this scarce treatment and they are still behaving like it is another handout that comes with no responsibilities. Wrong!

Making appointments is a known marker for adherence as is the candy-pill trial. Excuses such as the kids ate it, is a serious thing. As if they are to take them as ARV and they have them accessible to the kids, it’s the kids who will be intoxicated by these very strong medications. Next week, the story will be different, I am sure.

I do several sensibilisation presentations every week. This week took me to a youth group, STD clinic patients and another for medical staff. In all three the question about condom’s pores being larger than the virus popped up. The source? Cardinal Alfonso Lopez Trujillo, of the Dominican Republic acting as president of the Vatican pontifical council for the family had said, “The spermatozoon can easily pass through the ‘net’ that is formed by the condom.” Despite widespread scientific consensus that condoms block the HIV virus.

I am not about to challenge the church, as I will lose more than I will gain. I appealed to their common sense. Do you think you are more protected against HIV with or without a condom? Even if you think the condom is not 100% effective? They all answered they felt it made sense that with a condom there was more protection than without.

I also said, if the catholic church was right, prostitutes would not be charging less to have sex with condoms. And then I asked the men, why were they paying extra to get infected…

Next week, the November group saga continues and I have been invited Tuesday to a brothel to speak to “les femmes qui vivent seule”(women who live alone, women without men, or commercial sex workers). This should be interesting…

The novelty of the ARV Program has left the VCT Clinic a bit like the first child when a new baby comes home. I will spend time with them, honing the counselling skills as well as taking care of the counsellors themselves. The number of positives this month of October was 40% out of a total of 176 people tested.

Venturing to young patients we have found a way to adjust the adult dose for an 11-year-old girl. First we have to address the uncle’s decision (she’s orphaned from both parents) to keep her from knowing her HIV status and our obligation to have all patients understand what they are taking and why. Any suggestions?




















Congo Week 3

Larry’s Homecoming

In establishing my role in MSF, I have envisioned a program whose “legs” come from the patients themselves. Patients filling the holes in the picture of a holistic ARV program. To this end I seek to bring hope to the patients and show them the fruits of good adherence. Next step is doling out responsibilities to the patients in helping the clinic so that it can be all it can be without adding to the burdens of the medical team.

I talked to a friend and he agreed it was something he wanted to do. To my fortune, he’s black, positive for 16 years, looks alive and healthy and has experience working in HIV for many years. He’s also kept himself without meds for 15 years through good nutrition…a message that appeals to those without access to treatment.

In a week, we’ve been walking all over, a rarity for expats as we are usually ferried about in imposing 4-wheel drive land cruisers. This has given us a lot of proximity to the people of the areas; Bukavu, bagira and Kadutu. It is now standard that we are followed by a coterie of children, greeted by all with the musical, Jambo Jambo (think Lionel Ritchie, All night long) and many men who are prompted to call Larry over due to his imposing musculature.

They are surprised at my Swahili as they expect me to be the typical mzungu. Though limited to daylight hours due to security reasons, We’ve talked so far to an average 100 people a day from casual street contacts, improvised workshops in garages, markets, busy street intersections, bars and scheduled interventions.

Due to the large number of people who can’t believe we are both positive, we have started to do live HIV tests. We explain that this needs to be done with proper counselling and confidentiality, but because we have already tested positive and for the sake of dispelling doubts, we are just performing a rapid test. A lab technician explains the test to the public, puts on his gloves, cleans our fingers, pricks it and then the test develops a red line with a twin confirmation line on the control side and mouths are agape.

It’s driving home a message of you can’t tell HIV by the way someone looks and it’s wise to use protection. A theme the Catholic Church and other churches have ganged up on the use of condoms as futile, since the virus is smaller than the membrane wall of the condom. This has given everyone a much-sought sacred excuse not to use protection. The results are impressive.

I get the comment from everywhere I talk. It’s starting to affect the double prices charge by the commercial sex workers as they are now charging a single, no condom price. Last month’s seroprevalence at our test clinic was 40%; last week was around 80%. It’s unbelievable that in spite of this bleak backdrop, moral leaders show such leadership. They want to save souls, forgetting about the bodies where the souls reside.

We’ve talked about Congolese sex with prostitute clients, sexual abstinence and monogamy after the test with youth adding the use of condoms for those venturing outside this recipe. We’ve talked about priorities and how they will affect our future when so many are infected. How so many sport two mobile phones, jewellery, new clothes, but are always begging for food in this lush paradise.

Hunger is evident, the causes are not. It’s lush and the trees are laden with fruit, but no one climbs them to be picked. They prefer begging and complaining about the lack of access to food. There are at least 5 major food agencies manning therapeutic feeding centres, all in the lushest of environments. I would not be surprised to find out the food is grown locally…it’s that fertile here.

To address this issue, we gathered Bukavu’s best and brightest nutritionist to a roundtable discussion to forge a common document on nutrition and HIV. The document will be dual; one, a guideline for nutritionists, another, for the patients in an easy to understand concept. The discussion started the usual crowing of the professionals, followed by nutritional facts and it ended with Larry and me talking about what was important to us as patients.

Between the virus, the medications and the antiretrovirals it is a juggle between diarrhea and constipation. Being regular is a blessing and proper nutrition helps us achieve that…I think it was the first time they actually heard directly from patients about what they wanted to achieve with nutrition, and about time. I believe in a few weeks’ time a document will be forged by everyone coming together on this mutually beneficial initiative.

We will go on market rounds once with every patient group to see, understand their eating habits and show available and accessible alternative to their eating choices. Larry’s physique has emboldened the patients to see the relevance of better choices in eating. I have also seen how Larry is fine-tuning his message to one germane to Bukavu’s needs.

So what has been accomplished this week? Major sensibilisation drives to commercial sex worker clients, youth and women with HIV. We started the live test demonstrations with huge attendance enabling us to talk to many on prevention, the benefits of testing early. The message is simple…with HIV you either find it or it finds you…if you find it, there’s much to do to prevent illness…if it finds you, you are already sick with aids and the road is hard and difficult.

I talk to people regarding the context they live in…poverty. But poverty can be a point of departure in life or just your fate. Understanding HIV infection and how to stay negative is a way of staying healthy so that one can attain goals such as having a family and watotos (children), the most common goals of poor Batavians. Denying risk behaviour and falling victim to the ever-mounting statistics is no way to have a family, at least one that begets a future of continuity.

These are the challenges faced here. Men behaving badly, women subject to their whims, church-led edits against use of condoms for HIV, economic hardship, tribal conflict, rape, hunger all in the midst of the lush mountains and rich soils of the eastern Congo…

Patient update: October group reported 100% adherence, most out of the side effects from the ARV’s but one is in the hospital for anemia and liquid retention. Bear in mind we are starting with the sickest patients and their conditions at baseline were not favourable to begin with…the good news is that the treatment has been largely well tolerated and has brought out6 of the 7 patients from the regular course of infection.

November group started out terribly, as we had to reschedule their start date, is 100% adherent and all have regained their appetite in spite of side effects from the treatment. They are also coming in on time and enjoying very much Larry’s nutritional talks.

Of special note two patients have come out of their HIV closet. Maman Josephine and Nicole. We did three radio broadcasts on Sunday where Maman Josephine spoke out against HIV discrimination, as she has been barred form selling candy at the market because she’s HIV positive. At the end of the interview, Nicole felt there were questions not asked, grabbed the reporters microphone and starting interviewing Maman Josephine herself!

This is no small feat for someone living with HIV sign off a radio interview, Bukavu’s only mode of mass communication saying, my name is Maman Josephine and I am bagira and I am HIV positive!

Leaving behind a group of HIV positive volunteers to give a face to the issue has been a goal of mine and what a gift has been to have two angels come to the fore…it augurs well for the program and it bodes well for the reduction of stigma in Bukavu…bravo Maman Josephine and Nicole, welcome to the club!























Congo Week 4

HellHo’

Peering down a muddy alley, through the wafts of excrement, humidity and vomit all creating a whiff of the inhumanity about to be revealed. It is the quartier of the femmes’ qui vivent seule, a dilapidated row of clapboard housing where doors reveal two beds enclosed by sheets. The only privacy afforded to clients while their children wait outside. There is no floor to speak of and the filth is all around.

This door/room placement is repeated down a ravine where they are set up. It’s a bit of a commune, replete with Madame President who seems to be a sort of pimp to the others. We went there to talk to them about HIV and its prevention and also because this way they could service clients during the talk. I asked one client about the use of protection and he said; I have two wives, 5 children and numerous casual contacts and I never use protection. It doesn’t feel right, besides, the church says they don’t work. The pores of the condom are bigger than the virus…

The women started to talk; no one uses condoms. Asking clients to use them is guaranteed that they will go to the next one and lose their client. They are hungry and need to eat. Some are habitual visitors to the STD clinic week after week. Many have children with them. I told Madame president if she doesn’t protect herself, her children would become orphans. She replied, jamais! I will kill them before I die to prevent them from being orphans!

I had talked and heard enough, it was time to go. Time to reflect and try to understand how a people can be so miserable that the opportunity to take care of themselves in the most basic form is unattractive, even when the visible scars of disease and infection abound. Even with children to look after, their lot is miserable and it is hard to comprehend. Any suggestions on how to engage these women? They are Bukavu’s almost certain, epicenter of HIV infection.

To cap off the day we started a tuberculosis adherence program to get all the patients in line with tb treatment requirements and deliver peer support for the 8 month long and tedious multi-tiered treatment. First a roundtable, each patient sharing their experience with tb and where they were in their treatment timeline. There was everything, from one that was being desensitised to get her started on treatment to one that was 3 weeks away from completing the full course of treatment.

We also have a wonderful illustrated tb presentation from the tb centre in Bukavu that shows the story of Baba, a head of a family and his experience with tb from infection to cure. This presentation aims to give the science behind tb disease and treatment in an accessible manner with local illustrations. Since we had already shared our stories, the illustrations and accompanying text, reinforced and validated the voices of the patients themselves. These created a strong understanding of the subject matter and understand the commitment needed to defeat tb.

We added that as HIV positive people it was to our interest to cure it and avoid it so that we could concentrate on beating AIDS and keeping our fight focused on HIV alone. We explained that with our feeble immune systems, we were more likely to develop tb disease than other groups and not following the full treatment course resulted in resistance, having to start tb treatment again from zero and having to take more drugs…not a pretty proposition for anyone present.

Wednesday came about…time to see how the 2nd patient group did with their second, and last, candy pill trial. We had invited a patient from group 1 to talk to them and answer their questions and of course, we had the medications and supplemental food ready for those who showed progress.

One by one they gave their bags of candies and we did the count and all were 100% adherent! The second group got to start ARV’s today. We clapped, held hands, sang a song and talked about our lives about to change as from now on, twice a day we would be reminded we were HIV positive, possibly for the rest of our lives…

The testing centre was going to be my focus this week as I became alarmed at the 40% prevalence rate we had last month. The counsellors mental state is of grave importance at this moment as they are only two doing the work as well as the testing and giving out the news to patients every day, 6 days a week. This week we had 9 out of 10 testing positive on Monday; 7 out of 9 tested positive on Tuesday, same Wednesday and it shows no signs of abating.

Why the sudden explosion of people getting tested, and why the high prevalence? WHO estimates the area to have a 5 to 10% seroprevalence for HIV infection. Our testing clinic numbers are really off the charts. One big reason many are coming to get testes is the fruits of our outreach. Some have also said they knew me from the radio interview I gave last week and again this week.

Patients in the program are spreading the word and our outreach efforts are paying off. They know we have something to offer if test is positive. There is hope that something can be done. Still, we need to address counselling the counsellors, because at this rate, they will burn out fast.

As jobs are scarce here, our counsellors are afraid to acknowledge to the mzungus in the team that it’s heavy on them. They feel it will show them to be weak and they will be replaced. This is not the case, but it is how they feel. We will come up with a way to handle this properly and caringly as they are valuable to the program and their jobs are not on the line, specially in light of the unimaginable situation they are in of telling so many tested that they are HIV positive…

Had a full week of sensibilisation…spoke to a church leader’s group, orphanage family group, std clinics, dock workers and in all I sense an awakening that they are realizing there is light to be had even if one is HIV infected. Globally, there are many obstacles; as we fight big pharma to relax patent rules and lower prices, we fight governments to allow us to bring medicines in; we struggle to train and facilitate infrastructure to administer the drugs and then the patients still ask, is this for life? They frown about the side effects and they look at you like if you are crazy if you think they are going to take this medication. Specially one that doesn’t cure you from HIV…

It’s not easy, but for every 10 of those people, you have others willing to take you up on the offer to live a healthier life…these people make it all worth it…

A sad news flash…the local resident transvestite, Kevin, was found dead this morning from poisoning and a severe beating. Kevin knew how unacceptable his/her behaviour was as she insisted on dressing up as a woman…showing how strong those feelings are, that even in a inhospitable setting, exposed to daily taunting and ridicule, she still put on her make up and worked the streets of Bukavu. It was a tragedy waiting to happen and it is today over for Kevin…

As human rights groups look for the next battles…let’s not forget how decrepit the lot is for gays in the rest of the world, where a killing like this prompts only sighs of relief from the population instead of repugnance and resolve to find the culprits. Where in Ethiopia, gays are jailed for being sexual…for life. Where in Guatemala, gays are officially excluded from HIV treatment by their government even as treatment is available for all those who need it.

I operate under the cloak of marriage and have no kids to show as my wife is negative and I don’t want to infect her. This is my official line so not to jeopardize my mission and my life…it is that real…





























Congo Week 5

The film begins…

The week brought more radio emissions, went to church, looked at a pork project, visited rape victims, talked about prevention without mentioning the troisieme moyen and welcomed a little girl to once exclusive club of ARV’s…and the cameras started to roll.

Went back to the girls who live alone, tested in front of a whole town, paid a visit to the traditional medicine man.

She was lying out in her bed like a Goya model with a sweet face and standing besides her was a young girl, a very young girl. It was the rape victim’s ward in Panzi hospital; a modern medical facility sponsored by the Norwegian government in the heart of a troubled community. The wards were full of beds and the beds were full of women, mostly young all recovering from the horrors of rape, eastern Congo’s war on women and it’s future.

We had gotten permission to interview two of the patients, our choice to capture the necessity of offering ARV’s to those who come in before 72 hours after the fact and avoid becoming another statistic of seroprevalence. The first one had been raped and rejected by her family as used goods. I glanced around. There was a girl naked, catatonic, shaking uncontrollably. Obviously a recent admittee…wrong, she’s been in the ward for three months now, still horrified.

I decided to ask the sweet young girl and asked her age, 13 and proceeded to ask her for her story. The Goya model stopped me to say, she was just there keeping her company. I sat on her bed and asked, well, what’s your story…”I live in the woods and the RCD (Rwandan-backed army) army came in looking for the Mai Mai (eastern Congo rebels). They accused me of being the wife of a Mai Mai and 8 of them raped me. I was 9 months pregnant at the time and during the gang rape I started having contractions and this made them rape me longer. When they finished, they pulled out my dead baby with their hands and left me unconscious for a day in the woods. That’s when I was brought here by a NGO. My husband doesn’t want to have anything to do with me and I cannot even see my children. I have nothing…

On the radio, a controversial roundtable on condoms and their efficacy. A doctor, the HIV Bureau Chief, the owner of Prudence Condoms and myself were among the guests. I was left for last and after they recited figures in percentages, microns and other measures it was my turn to talk. I said I was no doctor, no scientist…just a person who when I used them, tested negative, when I went into a relationship and stopped using them, became positive and since then, using protection have not had my partner change serostatus…

Sunday it was church in the Pentecostal church of Bagira. Singing, our testimonies as people living with HIV and then the sermon. “When one tests for HIV, hate fills their heart. They hate god, they hate everyone and since they figure they will soon die, they don’t want to go alone.” We’re Satan personified and the devil must be defeated…

Larry did his finest (to date) presentation to a group of health officials. He spoke about the talk of peace, but he still saw a war raging…he called it genocide and spoke to a wake up to fight the continuing war Congo has on each other. In 1994 seroprevalence was 5%, after the war it jumped to 20% due to the influx of foreign parties joining the fray; Angola, Uganda, Tanzania, Rwanda all raping the country’s resources and plundering it’s women to terrorize all into submission.

The continuing disregard of the abc’s of prevention…abstinence, fidelity and condoms was making peace untenable for the many who continue to disregard life and it possibilities.

Finally it was time to tell la petite, our program’s first young person, about secret brewing inside her. To start her on a life long treatment it was necessary to disclose her HIV status even though her family has hidden this and the cause of her parent’s death form aids all her life to spare her the bad news.

I told her about an illness that until now there was little to do except wait to die. That the treatment was life-long and it would still not get rid of the “microbe”, but it would rid her of the stunted growth that has left her looking like a 6 year old instead of her 11. I told her, if taken properly and with the help of better nutrition and kuyitika (positive attitude) she could fend of the recurring candidasis, diarrhea, fevers and gain weight and look forward to going to university like her dead parents would have liked.

I welcomed her the next day for the workshop that started the process for the December group. I asked around all 11 of the 13 invited who showed up to introduce themselves to one another and share when they learned they had the virus. La petite said in her frail voice…”yesterday”.

We have an incredible testament to the fair selection process. There’s an army major who has already interrupted his initial treatment, two Rwandans (country that has repeatedly terrorized Bukavu), two on terminal stages and a pregnant woman. I explained the importance of adherence, presented the major as the face of resistance and how he will have to make an effort to make this chance be the one that works as there is no other treatment line available.

We talked about their responsibility to make it work, as otherwise they would be the authors of the resistant strain epidemic, and just what the world waits for Africa. On a more poignant level, they must show la petite fille, the example she needs to make the future shine again in this beautiful land in the great lakes of the heart of Africa.

On another muddy day we descended to the hellho’ again to capture the girls who live alone with the camera. They showed us their lairs one by one and discussed dreams, clients, and children all in the most unsettling of settings. Not so much the muck and stupor of too many men, but the promise it held for certain infection to so many others. The fathers who descend to patronize these women and bring home to wives and children another nail in the coffin of poverty and disease. Women who disregard what they know best to make a couple of dollars, 5 if they sleep over.

In a rond point (traffic circle) we gathered to test in front of the community of Kadutu. We spoke briefly, got pricked and tested in front of a couple of hundred people, all hungry to see if it was true that these two men were saying the truth about having HIV. A few minutes later, the tests showed the tell tale red bands of a positive result; not enough, our nurse, Mai, tested to show a negative result, live and direct.

The film crew is here, capturing all this for others to witness and hopefully realize the struggles and bring hope to those caught in the midst of this ongoing story.

Patient update. October’s group is now being seen twice a month, we saw them last week and we’ll see them next week. The 7th patient is still in hospital and retaining fluid and not getting better.

November’s group had their second clinic visit under ARV’s. 8 out of the 9 showed weight gains averaging a kilo (2.2 pounds) in a week. The 9th decreased her weight by the same amount. All had side effects, but nothing to write home about. One volunteered to speak at the December group’s starting day, sprouting another seed in getting patients to help the patients. Another has knitted washcloths that I will bring with me to sell and siphon the proceeds back to her.

I don’t believe in give-aways, but I do in helping people who are doing something to get out of their hole. I hope you help Mme. F with disposing of her excellent, hand-knitted cotton wash mittens.













Congo Week 7

A patient harvest



The final week is here…sensibilizations, transmissions via radio and in person. Tranmitting hope, showing in flesh positive test results and showing how appearences are deceiving. Helping patients understand that the pills don’t work on their own, they bring life, but also responsibilities. A responsibility to change behavior to responsible behavior to one’s body and to protect others. To nurture one’s body with beetre nutritional choices and cleaner water…all to minimize intake of microbes that challenge a weakened immune system.

To strengthen one’s resolve by tapping on to our positive thinking and letting our will to live, defeat our fear of dying. To understand that staying silent and ignoring the obvious, doesn’t get rid of the problem, on the contrary, it makes them bigger and less maneageble. Coming out with the infection takes the weight put by others out and makes the fight a concentrated one on fighting hiv.

This week we saw all three groups…the October and November group came back 100% adherent. The November group started the their third week with the full dose of Nevirapine, giving most the unpleasant side effect of skin allergies, challenging their adherence, but they remained vigilant and came back 100% adherent.

One patient from the December group described her hopes with the upcoming treatment as one that would reduce the amount of virus in her blood, elevate her white blood cells and she needed to make a change in her behavior to make it work. The message was transmitted…

The first patient group has volunteered for shifts in keeping the clinic clean. The 7th patient, in hospital, has volunteered to transmit her knowledge to another waiting patient so she can be ready to start her arv’s next month. Maman Josephine has returned to selling her things in the market, all this after coming out publicly about her hiv status. More patients came back with more knitted bath gloves, understanding that it is better to work than beg.

These are the fruits of our visit to Bukavu. These were the goals behind the patient program, to get them to take responsibility and charge of their lives. To leave fear behind and let them concentrate on their fight with hiv. To change their attitude towards the infection from one of dying and being sick, to one of living and being useful again.

We went to the heart of the conflict, the army base. We witnessed their capture training where beatings prepared them for the enemy. Beatings that made your hairs stand on end as they slapped soldiers in the face, beat them with sticks that would break repeatedly from the pounding as they lay pinned to the ground. Another being disciplined with over 50 stick lashes as he hugged involuntarily a cement column, being whipped on his back over and over.

We did a live test demonstration for the soldiers, our cameraman, pep, volunteered to do a test to show also a negative test result. He was brave to do it, as it could have tested positive. When we asked how many wanted to get tested, all raised their hands in unison. This shows a willingness to face the problem head on. It is now up to us to meet their needs of privacy and confidentiality.

Coming to a known testing site involuntarily discloses their pursuit of an answer to their status. They want testing to come to them and make it easier for them to test without any sort of disclosure. The counselors are against the idea as they fear patients reaction to a positive result may endanger their welfare. There are obstacles in every direction, but there are also solutions and compromises to be made.














Congo Week 6

Week 6

• 5 patients from the October group have volunteered to do weekly shifts to keep the clinic clean.

• The 7th patient from the October group, still in hospital, has volunteered to train a convalescing patient to be ready for the December group.

• Maman Josephine has returned to her market stand after disclosing her HIV status on the radio. Due to her long absence from the market, she’s having a hard time buying candies to sell.

• 2 patients from the November group have started knitting bath gloves to make extra money and another is slated to give her testimony to the December group and answer their questions.

• 17 patients have volunteered to grow more seeds for other patients who have no access to land and share the crops and know how.

When I started with MSF, I wrote the cover letter for the educational program. It was titled, “Get off the cross… we need the wood”. It was about getting the patients out of being sick, to being healthy; from dying to living; from passive recipients, to active in their new responsibilities.

Since arriving in the Congo, we’ve (patients, larry and myself) talked extensively about adherence, about making changes, making choices, making priorities; to think about living with an infection, not a disease. I believe that patiently, the nuggets above show that it has started to happen. They are living with their HIV and it has been part of the plan since day one and I feel blessed to have seen it with my own eyes.

Both October and November groups are 100% adherent. The November group was in their 3rd week visit. This is the week when they are taking their full dose of Nevirapine and some showed skin reactions that bothered them a lot. I assured them, it would go away in time and to keep taking their doses as indicated.

The December group is doing their candy-pill trial and getting ready for the big day, Wednesday, December 3rd.

The second baby born out of our prevention of mother to child transmission program is called baby Carlos…a healthy 4.5 kilo bouncing baby. The perfect example of the need to test and insure that no baby is born with HIV in Bukavu anymore…I hope baby Carlos becomes a symbol to mothers to be of this miracle that is having a baby born uninfected with just a single pill on a single moment.

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