My phone rang and the caller ID flashed Tama’s name. Abruptly after the first ring the phone went silent. These types of calls are not uncommon. The caller lets the phone ring long enough to register the call but not long enough for the recipient to pick up. My Twi language professor in Ghana used to call this HIPC calling (the devastating satirical power of that joke needs not be translated literally), more commonly the practice is called beeping or flashing. The idea is that the person getting beeped (beepee) will have more phone credit than the beeper, and will thus return the phone call. Tama rarely beeped me so I knew it must be important.
I called back immediately and Tama excitedly asked if we could have a short meeting about our AIDS association. Having just returned from a Project Design and Management (PDM) training, my optimism about development was somehow restored. Tama caught me in a motivated pocket vis a vis my hopes of creating a functioning AIDS association in Kante.
Association Espoir pour Demain (AED) is a community based organization where decision making power is delegated to people living with HIV/AIDS. AED requires a 5 person decision making body called a “bureau” which is elected by all the members of the association. 3 of the 5 members have to be HIV positive including the president of the organization. Since Kanté is trying to open an AED satellite, elections were held in February and Tama was chosen unanimously to be president.
Moving back in time.....
My week long post visit (one week during training during which trainees live in the community they will serve in post- training) in November happened to coincide with one of the AIDS association meetings I would be helping with during my service. Ishmael (predecessor) brought me to the meeting and introduced me to the hospital staff and members of the association. While we waited for the meeting to begin, we sat and talked with Tama, a 31 year old teacher, and the head of Kanté’s peer educators, a group of middle school students that help educate the community. Ishmael had told me he had worked with Tama and his peer educators throughout his service. Tama was very excited to meet Ishmael’s replacement (me) and told me his desire to restart the peer educators group. Last year’s peer educators had all moved on to their third year of middle school and were no longer able to volunteer as peer educators. We exchanged phone numbers and I left excited about the prospect of working with him in the future. Finding motivated, educated people to work with in Togo is difficult.
Ishmael brought Tama to AED/Kara last year when his health was failing. During his time in Kara, Tama made a remarkable recovery and had been fighting strong ever since. When I met him in November it was impossible to tell he was sick. During Tama’s time at AED he developed a relationship with the psycho-social director, Abass. During my first month at post I consulted Abass about the AIDS association in Kante. He told me to meet with AED Bafilo (the first AED satellite), invite one of their coordinators to a Kanté association meeting, and elect the bureau. Abass encouraged Tama to run for president and I agreed with this decision. Charlie and I brought Awali, a coordinator from AED Bafilo to Kanté to help explain the bureau and election process.
Awali was impressed with Tama and agreed with Abass that Tama would make a great AED president. Tama gave a speech before a vote was taken expressing his desire that the president not be an authoritarian ruler but a person that listens to the demands of everyone in the association. I had never really heard Tama speak publicly, but I was impressed by his short speech, and was hopeful for the future of the association when he was elected unanimously.
A few minutes after his phone call, Tama arrived at my door. He seemed genuinely excited to start his work as the president of the association. We sat on my couch and discussed then planned the association for hours. He had developed a system for the members to each contribute a small amount of money each month in hopes that a small account could be set up for the association. He wanted to set up a system of sharing costs so that when one person is sick and unable to afford health care, the association could help defray the costs of treatment. When we finished up the meeting he told me he had not wanted to be president because he was busy as a teacher and had little time to himself. He had been thinking about leaving Kanté and moving back to his home in Niamtougou but had decided to stay to help create the AIDS association in Kanté. He left me telling me he was going to Kara the next morning to have a CD4 count analysis and would be back the following evening.
The next afternoon I received a phone call from Tama. One ring, two rings, three rings. He had to see me urgently. Within a few minutes of the phone call, Tama stood outside my door, beads of sweat pouring down his face. I quickly invited him inside where he refused water and all he could say was, “ca ne va pas”, I am not well. Reaching into his bag, he showed me the results to his CD4 analysis.
Treatment in Togo
For five years Tama had a stable CD4 count of 150 per micro liter of blood. According to the World Health Organization (WHO), a CD4 count lower than 250-200 per micro liter of blood is defined as full blown AIDS. For many people in Togo with CD4 counts far lower than 200, there are no funds to help pay for life saving medications. The majority of Togolese people cannot afford to pay 9 dollars or more each month for ARV treatment. In Togo, ARV treatment is reserved for the wealthy and the lucky.
Over the past 5 years the price of ARV drugs has dropped significantly. In May of 2007 the price of ARVs dropped from 8,535 cfa per month ($20) to 4,350 cfa ($10) per month, though access to life saving drugs is still out of reach for most people in Togo. The Global Fund to fight AIDS, TB, and Malaria, has cut any new funding until the next round of proposal due to mismanagement of project funds. This has made getting a new government/Global Fund subsidized carnet (1,000 cfa [$2.50] per month for ARVs) impossible until further notice. The carnets are used to ensure treatment for people with CD4 counts lower than 200. Today even people with CD4 counts considerably lower than 200 are still unable to receive a carnet and are often not placed on a waiting list. ARV treatment is a lifelong commitment. If a Togolese person can afford 4,350 cfa one month, in order to properly adhere to the regimen, they would have to be able to finance ARV treatment for the rest of their lives. With the suspension of new funds from the Global Fund, and few other sources for funding treatment programs in Togo, the situation for PLWHAs in Togo today is dire.
Tama was lucky to get his treatment funded by the Global Fund before it was decided that they would no longer fund new treatment for people living with HIV/AIDS. Tama fought the disease and his CD4 count was “stable” at 150 per micro liter of blood. According to the World Health Organization (WHO), A CD4 count lower than 250-200 is defined as full blown AIDS.
The analysis was not difficult to read. There was a graph with the average healthy person’s cd4 count at the top (1,200-1,500 per micro liter) and then at the very bottom was Tama’s dot. 61. Since September 2006 his CD4 count began to drop from 150. Slowly his body built a resistance to the medication.
“I am done fighting, I have lost all hope”, he whispered. The man that had walked through my door the day before, a teacher, an educated person giving back to Togo, had been transformed into a defeated man.
We discussed better nutrition practices or another trip to the hospital. My efforts felt even emptier than they were when Tama refused. I called the medical assistant, the hardest working person I have met in Togo, who also helps run the association. He told me that Tama needed an infusion of drugs and vitamins directly into the blood that costs 2,000 cfa ($5.00). I convinced Tama to try the infusion and take a trip to AED Kara in the morning. He agreed.
The next morning I walked into the AED Kara office and saw Tama with no shirt on lying on two plastic chairs. He looked far worse than he had the day before. His muscles were tightening he was having trouble speaking. He was taken on the back of a moto to the hospital in Kara where he received 11 more infusions. He was in the hospital for almost a week. Throughout the week I would visit him a couple of times a day and by the end of his stay in the hospital his health had make another remarkable come back.
We discussed Togolese history, colonization, the German occupation of Togo, and how he had always wanted to take a trip to the Tamberma country but never had even though he always lived relatively close.
Tama returned to Kanté, took a hiatus from his job, and rested. We discussed future plans for the association but he was still too tired to attend meetings. I received another phone call from him a couple of weeks after his visit to the hospital and stated he would be going back to his village to be with his family and he did not know when he would return. He did return to Kanté to help another person from our association. I was visiting him nearly every day. One day while wandering around Kanté looking for someone’s house I found myself in front of Tama’s house. I told him I was lost and just decided to stop by to say “hi”. Even in a weakened state, he got up and walked with me about a half a kilometer to the person’s house and then waited with me for over an hour until the person showed up.
The head of the peer educators, a young, energized 16 year old boy was at my house not long after I had returned from a meeting in Kara. With tears in his eyes he told me that Tama had passed away the night before. Tama had packed a small bag, returned to his village, and within two hours of arrival collapsed in a small piece of land a few feet in front of his home, and passed away.
The student and I stood silently for a few minutes. I had no words of encouragement, no words of condolence. The student told me that all of Tama’s students wanted to attend the funeral, but only some could afford the trip. The $2.00 fee did not stop students from attending the funeral the next morning in Niamtougou. During the taxi ride, I sat awkwardly with 20 or more middle school students. During the 30 kilometer ride, we passed countless students from Kante walking, jogging, and biking towards Niamtougou, to go to Tama’s funeral.
Attending Tama’s funeral was the most difficult thing I have done since arriving in Togo if not my entire life. I share this story only to give more people a chance to know Tama. Not one person mentioned he died of AIDS during his very well attended funeral. No one admitted that it had been AIDS that took his life in Kanté, where he spent the last part of his life educating children.
This is the story of someone that will more than likely never even have the honor of being counted as a statistic.