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.