FHI - Nangoku Overcomes Self-Stigma

OCTOBER 2005 � On the western slopes of Mount Meru in Arusha live the Masai people in their traditional house clusters locally known as Manyata. This is Arumeru district, which is served by the Selian Lutheran Hospital. The hospital has a program to support people living with HIV/AIDS with comprehensive services within a continuum covering healthcare facilities, the community and households. A PEPFAR-funded home based palliative care program known as Tumaini project is implemented by trained community volunteers and is fully linked through functional referrals to the Selian Care & Treatment Clinic (CTC).

In the village of Sambasya a few kms from the hospital lives 37 year-old Nangoku. She has three children aged 11, 8 and 4 years. Her husband has been living in Nairobi for the past 5 years working as a watchman. Nangoku has never been to Nairobi and although Nairobi is only 270 kilometers away with regular transport connecting with Arusha, the husband has been coming home only once a year on leave. However, he has not been home for over 18 months now and has not sent any money to support the family. He has never bothered to enroll his elder children to school and the wife could not make such a decision without him. Even if she wanted to, she would not because she cannot afford to buy uniforms and other school materials. Nangoku had been sick for a long while and became bed-ridden in May. Because of ill-health, she did not prepare her farm and the family did not harvest anything and starvation was inevitable. Neighbors had supported her initially but soon gave up, leaving her to struggle with her starving children.

In May, Paul, a trained volunteer was informed of Nangoku's plight and visited the family. The first thing he did was to give the family some food and immediately arranged for transport to take Nangoku to the hospital. She was diagnosed as a TB case and was given treatment including anti-TB therapy. After two months of treatment, her condition improved slightly, but she continued to develop various other symptoms including persistent diarrhea and relapsing fever. Paul brought in his supervisors for further assessment. They suspected HIV/AIDS and counseled her to go for VCT. She refused because according to her, she is faithful and her husband is healthy and still working as a watchman. In the meantime, Paul registered two of her children in school. The Tumaini project supported them with school uniforms and other materials. The family received food portions on a regular basis and the children's health improved significantly.

FHI, the technical lead agency for Tumaini, identified poor communication and counseling skills as an issue among the volunteers. A 5-day counseling and communications skills course was organized for all Tumaini volunteers and supervisors in June-July. Empowered with the new skills, Paul and the supervisors were eventually able to convince Nangoku to do the test and she reacted positive to HIV. Her CD4 count was also very low so she was initiated on ART in mid-August. Through the Tumaini support she received free medication and was given free transport to the hospital because of being very weak. However, after using the ARVs for one month she became strong enough to go to the hospital on her own. She now has strength to tend to her garden and fend for her pregnant diary goat which she was given through the Tumaini project to enhance her nutrition and income generation. She told a team of supervisors recently, "I don't know how to thank Paul and the people behind him because without their support, I would be dead by now and my children would be suffering. Now I must live because my children need me." She promises to adhere to medication and her elder son is her adherence assistant. In the meantime the counselors have asked her to get her children, especially the younger ones tested as well and she is showing no resistance.