I have been involved with leprosy as a medical doctor since 1993. In 2006, the year that Tanzania achieved the WHO goal of reducing the number of cases below 1 per 10,000 population at the national level, I decided to take an unpaid leave of absence from my country's leprosy control program and focus my attention on community work.
With every health facility able to diagnose the disease and prescribe free drugs, I felt there was another challenge we had to address. We were treating patients, declaring them cured and sending them back to the community, yet the community was shunning them as socially unacceptable.
|People affected by leprosy on Penba island, Zanzibar|
Currently, I am working as general secretary of the Tanzania Leprosy Association (TLA). The association began life in the 1960s as an organization of medical professionals aimed at finding a way to obtain drugs for leprosy patients. Some years later, when the Tanzania national tuberculosis and leprosy program (NTLP) was launched in 1979, TLA and international NGOs worked together to identify and treat all leprosy patients. Initially, NTLP was treating about 35,000 patients a year.
Now that Tanzania has passed the elimination milestone, TLA is transforming itself into an organization to tackle the issue of stigma and discrimination. Its leaders and rank-and-file members consist primarily of people affected by leprosy, whose mission is to take the initiative in changing social attitudes toward the disease.
This is important for a number of reasons. First is the issue of disability. Among new patients today, 12% already have grade II disability, which is irreversible. Persons with the disease are not coming forward for treatment because they fear being rejected by the community.
Second, as I have already mentioned, people affected by leprosy are being excluded from society because the surrounding community is misinformed about the disease. There is a perception that people with leprosy-related disabilities have not been cured and remain infectious. And even when a person shows no outward sign of the disease, the mere mention of the word leprosy stigmatizes.
There is a perception that people with leprosy-related disabilities have not been cured.
In parts of Tanzania where people are better informed, people affected by leprosy have been accepted. Some become community leaders. But even then, they are still treated differently in certain situations. For example, I know of one village leader who is given his own plate at weddings, rather than being allowed to share the same plate with others as is our custom.
I believe the stigma attached to leprosy and the accompanying social isolation will only be eliminated when those who have personally experienced the disease regain their identity, dignity and self-confidence.
For this, we must empower our members. Part of TLA's role is to instill confidence through leadership training. But confidence can also come from speaking in front of a group for the first time, sitting next to a government official at a workshop, or having one's child attend school.
TLA has identified 39 leprosy settlements in Tanzania and would like to establish a branch in each one. We know of at least 4,000 people affected by leprosy, and if half of them join TLA, that will be a good start. We hope to reach 500 members by the middle of this year.
Athough TLA's raison d'etre is leprosy, I believe it must also play a role in sensitizing its members about other issues such as HIV/AIDS and women's rights. No one else is informing them about these matters because they remain by and large excluded from the community.
The bottom line is: people affected by leprosy are entitled to live with dignity, participate fully in society and enjoy the same rights and opportunities as everyone else. TLA is here to help them achieve that.
AUTHOR: Dr. Sira Mamboya
Dr. Sira Mamboya is general secretary of the Tanzania Leprosy Association, based in Dar Es Salaam, Tanzania.