I spent the last couple of days at a workshop in the Km 81 Mennonite Hospital on health promotion and leprosy. I assumed that the hospital was in the Chaco near Filadelfia, since it is owned and operated by Mennonites, but it’s actually just a couple hours drive east of Asunción. (The Chaco is to the west.) The hospital has an interesting history, it was founded as a ‘thank you’ to Paraguay for taking in Mennonite refugees. Today they take in all the leprosy patients in Paraguay who require hospitalization, as well as treating patients with other skin diseases and tuberculosis patients.
The purpose of the workshop was to bring together people from the Ministry of Public Health, the National Leprosy Program, and the health care workers from different health regions (educators, coordinators, primary care doctors, and epidemiologists) who find and treat leprosy cases to come up with new strategies to reduce stigmatization of leprosy patients and improve early detection and treatment of the disease.
Leprosy is an infectious disease, but 90-95% of people have a natural immunity to the infection (they won’t get sick if they are exposed to it). And leprosy is CURABLE!
But a lot of leprosy patients are afraid to seek care because of the stigma carried by the disease. One of the health care workers at the workshop told us about a woman with leprosy whose child told her she should leave their home because she was a risk to them. Even after being cured, many leprosy patients have trouble re-integrating into their families and communities.
The situation is complicated by the physical deformities that often accompany leprosy. These deformities (the loss of fingers and toes, facial disfigurement) are not the result of leprosy itself. Mycobacterium leprae, the bacterium that causes leprosy, attacks nerves. Leprosy patients are no longer able to feel their extremities (hands, feet, face), and are more prone to accidents and secondary infections that cause the deformities.
Furthermore, even after a patient is ‘cured’ of leprosy, and all the bacteria in their body are dead, about 1/3 of patients with multibacillary leprosy (a more advanced case of the disease) will have severe immunological reactions to the dead bacteria. These immunological reactions can be painful and are physically apparent, leading people to believe that the patient has not really been ‘cured’ and may still be infectious. Dead bacteria can remain in the body up to 15 years post-cure. This is how the stigma of ‘being a leper’ can stay with former patients.
I learned a lot at the workshop about how the health system works (and doesn’t work) in Paraguay. They are currently moving to a new model of primary care with a strategy called Atencion Primaria a Salud (A.P.S.) which is designed to expand the reach of the national health system. The Ministry of Health is trying to provide a primary care team, Unidad de Salud Familiar (U.S.F.) for every 5000 persons in the country. Right now Boqueron, the department where I will be doing my research, has 3 U.S.F.s. By numbers this covers about 25% of the population, but as one of the doctors at the workshop pointed out, if you take into account the distance that this population is spread over the coverage is actually much less. Most of the health care in the region remains the responsibility of the health posts and health centers that are spread around the department.
We spent the last part of the workshop in our department teams coming up with a plan of action for reducing stigmatization of leprosy patients and catching cases earlier in our region. Team Boqueron is going to screen for leprosy patients on their usual rounds for the national TB program next month, and they’re organizing an educational/training workshop with social leaders (chiefs, pastors, teachers, health post managers) from the surrounding communities to teach them about the major signs of leprosy (white or red skin lesions, no sensation in the lesion) and stigma.
Wikipedia has a lot information about leprosy and its history here.
The WHO page on leprosy is here.