For almost 13 years Maimouna only knew that her parents died of a “blood disease” when she was young. But three months ago she learned that disease was HIV/AIDS - and she is infected too.
“I can’t tell my friends. Only my grandmother knows,” the tall, thin girl said after one of her regular check-ups at the Gabriel Toure Hospital in the Malian capital, Bamako.
Maimouna’s grandmother, Oumou, held off letting doctors tell her for so long because she was afraid how her adopted daughter would be treated if more people knew.
In Mali, HIV/AIDS infections hover around 1.7 percent, low by African standards, but ignorance about the disease and stigmatisation of people infected with it run extremely high, according to health workers.
“When people have AIDS terrible things are said about them,” Oumou said.
When to tell AIDS orphans about their infection is a subject of controversy among health officials with some advocating telling children the truth early, others waiting until their teens.
Pierre Robert, head of a UN children’s agency (UNICEF) pilot HIV/AIDS programme in Mali, urges telling children early because “it’s much less dramatic to tell them at age six than 16. For adolescents there are lots of questions and it can be very painful.”
Cooperation with a hospital in Rwanda means the Bamako facility’s staff have been trained by Rwandan doctors specialised in telling children about their status.
Assiatou Coulibaly, head of the HIV/AIDS program at the Gabriel Toure Hospital agrees because she says an informed child is more likely to adhere to the strict regime of medicines that can prolong their lives.
“It is necessary to take complete charge of the treatment and psychosocial counseling,” she said. The UNICEF programme at the clinic has integrated psychosocial support into the HIV/AIDS clinic and also deals with therapeutic and nutritional care.
The medical logic of telling children the truth is confirmed by Maimouna, who says she has been much more serious about taking her syrup anti-retroviral medicine since she found out what it is for.
In the three months since Maimouna was told the truth, she has also undergone counseling and met dozens of other children in the same situation. In group sessions, she and the other children learn about the immune system and the importance of their drugs. The children often become friendly outside of the session or exchange mobile phone numbers to send each other text messages.
“The disease is the bond that unites them, but they also learn from each other that they can live positively with the disease,” UNICEF’s Robert said.
At the end of the day, for Maimouna, it is back out into the world with her closely guarded secret. Gripping a book under her arm and preparing to leave the hospital, her face grows serious.
For her grandmother, Oumou, at least, the truth is better than guarding a secret. “I feel relief now I have told her," she said. "Before, she would always ask me questions about her parents and I had nothing to tell her.”