Leprosy Mailing List – December 10, 2016
Ref.: (LML) Competent leprosy services
From: Joel Almeida, Mumbay and London
Mr. X was a person disfigured by leprosy. I knew him well for many years. He shared personal stories about how his life was turned upside down by the disfigurements of leprosy. His family had all emigrated from India to various affluent countries. But he remained in India, living among others disfigured by leprosy and serving them.
One thing he said will stay with me till the end of my life:
"Even the whores won't take my money."
That brought home to me, more powerfully than anything else, how deep were the emotional wounds accompanying the disfigurements of leprosy, and how thorough was the exclusion and isolation.
I had the good fortune also to enjoy the personal friendship of Drs. Paul and Margaret Brand. When Dr. Paul Brand first went to India, he was told by other doctors that if leprosy patients were allowed into a hospital, all the other patients would run out. This only boosted his determination to find solutions. Both of the good doctors faithfully kept finding solutions for these people who were shunned and neglected by most others.
But for the compassion and dedication of such giants, including Mahatma Gandhi, Baba Amte and many others, people affected by leprosy would have continued to be shunned and neglected for much longer. This compassion formed the slender thread by which hung services for people affected by leprosy.
Our scientific understanding of leprosy, particularly in microbiology, pathology, epidemiology and public health, has since advanced. We know that inexpert services for leprosy are near-useless. Because then people with lepromatous leprosy, through no fault of theirs, go undetected for years. And people with silent neuritis, through no fault of theirs, suffer avoidable permanent nerve damage and disfigurement.
What is our response to inadequate and inexpert leprosy services?
One proposal is to dilute the expertise even further, by diverting already inadequate resources from leprosy to other problems. We would abandon competent leprosy services so that we could join others who are working on other problems. In effect, we would condemn people affected by leprosy to avoidable disfigurement, since leprosy expertise is scarce and irreplaceable.
Drs. Paul and Margaret Brand, along with Mahatma Gandhi, Baba Amte, would probably cringe at these proposals. People who understand the microbiology, pathology, epidemiology, clinical and public health aspects of leprosy, would laugh, or weep.
Fortunately governments such as those of India, and organizations such as The Leprosy Mission International, remain committed to boosting the expertise in leprosy services. Without that expertise, we might as well shut down leprosy services and join the many who shun people affected by leprosy.
People disfigured by leprosy have been speaking out, especially in the past decade. They petitioned the Indian parliament to examine their inhumane living conditions. As a result, parliament ordered a sample survey of leprosy in India. The sample survey revealed that the incidence rate of leprosy in India was being under-reported by a factor of up to five. That is, India actually had not 125,000 new cases per year but nearer 600,000 new cases per year during 2008-10.
Meanwhile, a fictitious victory was being proclaimed. This was a triumph for M. leprae and a disaster for leprosy patients. The premature declaration of victory drove talent and resources away from leprosy. Some people, in the face of contrary evidence from the field, still continue to predict an imminent victory. This is damaging to leprosy services.
The incidence rate of newly detected cases with visible deformity at diagnosis has doubled in India, since 2005. This despite spectacular increases in per capita income. The sooner we prepare for a long war, the better.
Concerned citizens took the Indian government to court petitioning for better staffing of leprosy services. They have put leprosy back on the agenda, and the Indian government is steadily ramping up its efforts. More finances are still required, to ensure fully competent services. We need to make a list of the activities and finances required reliably to protect people against the disfigurements of leprosy. Then the scale of the financing gap will become evident, and we can beat the drum loudly on behalf of the population at risk. That's how to raise hundreds of millions instead of tens of millions in financing.
Ordinary people at risk of leprosy have fought a brave battle and gained ground. Let's not be content to gather funds or accolades in the name of leprosy services, while abandoning the people at risk of disfigurement. If they are good enough for our publicity materials then they are good enough for expert services. Let's use our influence and gifts to stand shoulder to shoulder with them, and amplify their voices.
If we waver, let's remember Mr. X being turned away and shunned. Our scientific knowledge and compassion are slender threads. From these threads hang the hopes of people at risk of leprosy and its disfigurements. Let’s not abandon people to the disfigurements of leprosy, through carelessness, ignorance or expediency. We will do better in this long war by holding on to science, field research and compassion.
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << firstname.lastname@example.org