Thursday, June 3, 2010

TASO (The AIDS Support Organization)

After a morning at the Foundation for Human Rights Initiative and a lunch of typical Ugandan fare at MUBS, we boarded Big Blue for TASO, The Aids Support Organization. The non-government organization was founded in 1987 by Christopher and Noerine Kaleeba with a mission to restore hope and improve the quality of life for those infected with HIV while also preventing further infections. From 16 founding members 23 years ago who met to support one another through fighting the disease and its stigma, TASO has blossomed into an organization with 11 centers like the one we visited today at Mulago.
The Drake and MUBS students came to visit on a ‘clinic day’ when about 200-250 clients come for care from either the counseling or the medical wings of TASO Mulago. In the medical wing, doctors primarily address administration of antiretroviral therapy (ART) and treatment of opportunistic infections like Kaposi’s sarcoma, tuberculosis, staph infections, thrush, and many other infections that a strong immune system can typically fight off. When an individual has HIV, however, the virus targets CD4+ T cells that are the central immune system activators; without them, patients cannot mount a proper immune response. Antiretroviral drugs are scarce in Uganda, as they are all over sub-Saharan Africa, so TASO follows WHO standards only administering ARVs when the CD4+ T cell count has dropped below 200µg/dL (350µg/dL for pregnant women) or the client has already fallen victim to opportunistic infections. All therapies are free for the clients. In the counseling wing, staff members work to encourage positive living, disease-state monitoring, goal-setting, and guidance. They also provide basic counseling for prevention, children, couples, families, loss, crisis, and support. Research for data, evidence, and donor accountability is also based out of the counseling department of TASO.
As we filed into the main building, there were many people waiting for their number to be called to receive services. We were informed that the organization serves 36,000 clients at Mulago. Six to eight percent of these are children aged 17 and younger. Of their client base, about 68% is female, and 32% is male. The presenter explained to the seminar’s students that the disproportionate nature of the service based on gender resulted from stigma; women have less of a choice about ‘coming out’ and are not as highly affected by the AIDS stigma as men.
After a brief informational presentation, students enjoyed a performance by TASO’s drama group, which was initially formed in 1992 and has turned into a center-wide project with professional training. Before singing their opening songs, Light and Hope and Trumpet Call, a spokesperson from the group explained their mission to spread the word about positive living, awareness, and eliminating stigma. He stressed that it’s important to realize that even if you’re HIV positive, you can do something positive. Smiling and full of energy, the groups sang their first two pieces in beautiful harmony demonstrating their talents and dedication to spreading the message to fight AIDS. It was very interesting to listen to how the singers included lyrics that encouraged actions to promote HIV awareness and detection, such as talking to a spouse and getting blood work done.
Gertrude, a member of the drama team, was then introduced to tell her story. She explained in candid and heartfelt detail how she had contracted HIV from a man who falsely promised to pay for her school and then proceeded to take advantage of her sexually. Her story was inspiring, though, as she explained how TASO helped her to rebound from losing her job because of stigma, reclaim her life with positive living, marry, and even have a healthy child of her own.
After Gertrude’s testimonial, the drama team performed several more musical numbers. One addressed AIDS stigma with solos from various members highlighting their traumatic experiences with stigmatization. One member sang about losing his friends, and another woman related in her native language her story about being kicked out of the home that she and her deceased husband had built. Another piece emphasized the power that comes with knowledge because even if you are HIV positive there’s still life to live and everybody will die at some time. The closing song had everybody clapping, and finally standing together, perhaps symbolizing us all standing against AIDS. After the music finished, the group members each introduced themselves and stated the year they were diagnosed. Some were diagnosed and joined TASO as early as 1990, 14 years before antiretroviral drugs (ARVs) were introduced to Africa. One man diagnosed in 1995 was even able to boast a CD4+ Tcell count of 1,119µg/dL without ARVs, showing the effectiveness of TASO’s ‘positive living” method which encourages eating healthy foods, taking medications, no smoking/drinking/drug use, mild exercise, acceptance, socialization, not blaming others, not feeling guilty, avoiding depression, and basically leading a normal, healthy life.
After the group closed their performance, students were allowed to ask questions and browse the jewelry and crafts that were made my clients of TASO and for sale to benefit the organization. The afternoon’s performance and messages, hopefully inspired students to consider the possibility of TASO’s vision coming true, the possibility of a world without AIDS.
Perhaps as you consider whether or not TASO’s vision is realistic, you can consider other questions regarding their organization and HIV/AIDS in Africa. How were you touched by the music of the drama group? Did Gertrude’s story inspire you? Were you surprised by the appearance of those with HIV/AIDS? Do you think stereotyping and stigmatizing is an issue in the United States because of our expectation of what they would look and act like? What do you recognize at the biggest challenge to fighting AIDS in Uganda? Do you think stigma is still a major factor affecting an HIV-positive individual in Uganda? If so, what did you recognize TASO doing to combat stigma? If not, what do you recognize as factors that are helping to reduce stigmatization?

7 comments:

  1. I found the songs that were sang by the TASO team very touching and in a way made me think of life in a different perspective than before.I realized that most of us,the Ugandans are still showing rejection to AIDS patients in one way or another.By seeing people with the strength and courage to come out publicly and declare their status,and also warn others about the deadly disease, made me realize that if we are to kick AIDS out of Uganda as well as the world,then we must join hands and fight it together.Lastly,i think TASO is doing a great job through their medical and counseling services which provide hope for those infected and affected by AIDS.
    By Miria Angom.

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  2. What impacted me the most after visiting TASO was Gertrude's story. Her story was so inspiring because even though she has HIV she still has a positive outlook on life. She was even able to have baby that was not born with HIV. I think that her story shows that there is hope for the future to help reduce AIDs in Uganda. I also think that TASO is doing a great job to help people deal with having the disease and using their songs to educate people of how to prevent AIDs.

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  3. I agree with Brooke. Gertrude's story was really sad and inspiring. She gives hope to the individuals who want to have children, but not pass on the virus to them. I thought it was also interesting how optimistic all of the positive HIV individuals were. We rarely hear of cases or see people actually living a healthy and "normal" life with the virus. TASO does very well at giving patients hope through counseling and programs that lessen the stigma associated with HIV/AIDS. More HIV positive individuals are working than in the past, but the attitude against the virus still needs further improvement. TASO's singing group promotes this positive attitude and gives people the hope to live with HIV/AIDS.

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  4. Brook I agree with you as well. Gertrude story was so amazing to hear it gave such a personal touch to the whole day. It was like every other aids speech you here doesn't really affect you personally but with Gertrude telling her story it gave a face to the story and you had no other option to be like "wow, I know someone with aids." I think that it had to take a lot for her to say what she said and relive the experience. I enjoyed the songs and the meanings behind them. I have to say I was a little taken back by how pushy they were about buying stuff from the little stand, and that kinda upset me. I would have liked them just to mention it once that they had a place for us to purchase crafts and such and not mention it like 7 times throughout the presentation. That for me kept detracting from everything else so powerful that was going on. Overall, I enjoyed TASO very much and learned so much on an educational level and on a personal level.

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  5. What impacted me most were definitely the songs with the powerful messages. They were amazing! My favorites were;

    Defeat the Enemy of AIDS- This was a beautiful song really just spreading the awareness of AIDS. There message was to have safe sex to defeat the spread of AIDS.

    The War on AIDS Must Be Won- This song was very inspirational. It encouraged us to continue to spread the awareness of AIDS.

    Gertrude's story was very special to hear. It gave me chills hearing a complete stranger open up and tell us an emotional story. Even though she is infected wit HIV, she still is living her life to the fullest!

    Overall Taso was a experience of a lifetime. I really enjoyed the songs and the people! I think that spreading AIDS awareness will rid the negative stigma of people infected with HIV as well as decrease the amount of infected people worldwide.

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  6. I also enjoyed the TASO visit, like everyone else. However, I was a little disappointed that they gave us such a brief overview of their programs and services. I left with many questions about what they are actually doing and wondering if their work is helping as much as it appears to on the surface. Though I was very touched by the presentation, I feel like much of the visit was sugarcoated or framed to seem good in a presentation setting (like Gertrude's story). So I have a difficult time saying if TASO is doing a good job combating HIV and its stigma without a little more research.

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  7. I also thought visiting TASO was very inspiring and interesting, but I have to agree with Josie. I wish we could have learned more about what they do on a day to day basis to help individuals with HIV. It seems like they are doing so much to help patients, and I wish we could have gotten a better sense of the direct care that they provide.
    However, I thought the drama group was very inspiring. It was nice to hear that they are trying so hard to fight the stigma of AIDS. This seems very important in Uganda's fight to end the spread of HIV. Only when people understand HIV and respect those who have HIV can they really begin to fight it. This part of TASO was one of my favorite things that I learned. Seeing those who have HIV talk so openly and passionately about it was inspiring. It definitely gave me hope that they can do a lot of good to help end the stigma and fight AIDS.

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