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Blinding trachoma: why success depends on risk taking Blinding trachoma: why success depends on risk taking
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Blinding disease trachoma is a bacterial eye infection, once endemic to the United Kingdom, United States, and Europe, but now relegated to the poorest, most neglected communities on earth – largely in sub-Saharan Africa. Though easily preventable, trachoma can rob a victim of quality of life slowly, by painfully blinding by repeated infections over the years.Blinding disease trachoma is a bacterial eye infection, once endemic to the United Kingdom, United States, and Europe, but now relegated to the poorest, most neglected communities on earth – largely in sub-Saharan Africa. Though easily preventable, trachoma can rob a victim of quality of life slowly, by painfully blinding by repeated infections over the years.
Having a sensitive area like the eyelid cut, understandably, would frighten anyone anywhere in the world. To some, it seems more appealing to continue, with one's eyesight and life becoming progressively worse rather than risk a dramatic change with the potential to lose what limited vision they do have. Yet the reality is that the vast majority of people, 97%, are satisfied with their outcome after surgery and the preservation of their sight.Having a sensitive area like the eyelid cut, understandably, would frighten anyone anywhere in the world. To some, it seems more appealing to continue, with one's eyesight and life becoming progressively worse rather than risk a dramatic change with the potential to lose what limited vision they do have. Yet the reality is that the vast majority of people, 97%, are satisfied with their outcome after surgery and the preservation of their sight.
In my role as a Carter Centre supporter of trachoma victims, I have heard a similar resignation to defeat at the international level. What happens if a new programme fails? What happens if we make things worse?In my role as a Carter Centre supporter of trachoma victims, I have heard a similar resignation to defeat at the international level. What happens if a new programme fails? What happens if we make things worse?
This has been a particular concern during international discussions on comprehensive trachoma control (pdf) – including health education, mass antibiotics distribution, surgeries for people who are at immediate risk of blindness, and improving personal and environmental hygiene. These activities require local health workers, clinicians, public health professionals, education professionals, development professionals, and the communities, themselves, to work together – a process sometimes considered too complicated and time consuming.This has been a particular concern during international discussions on comprehensive trachoma control (pdf) – including health education, mass antibiotics distribution, surgeries for people who are at immediate risk of blindness, and improving personal and environmental hygiene. These activities require local health workers, clinicians, public health professionals, education professionals, development professionals, and the communities, themselves, to work together – a process sometimes considered too complicated and time consuming.
Some surgeons may throw up their hands and say that it's impossible to provide water and sanitation in these communities. Some water and sanitation professionals may think it's impossible to distribute drugs to reach millions of people. The inclination either is to focus on one aspect of the comprehensive integrated programme or to simply neglect it.Some surgeons may throw up their hands and say that it's impossible to provide water and sanitation in these communities. Some water and sanitation professionals may think it's impossible to distribute drugs to reach millions of people. The inclination either is to focus on one aspect of the comprehensive integrated programme or to simply neglect it.
Another major challenge is the difference between screening people (the public health approach) and diagnosing (the clinical approach). This is an area where we've had particular problems. The International Coalition for Trachoma Control's 2020 insight document (pdf) was the first attempt to put it all together and is being used as a roadmap by the global health community now.Another major challenge is the difference between screening people (the public health approach) and diagnosing (the clinical approach). This is an area where we've had particular problems. The International Coalition for Trachoma Control's 2020 insight document (pdf) was the first attempt to put it all together and is being used as a roadmap by the global health community now.
But if I've learned anything from patients, it's that a willingness to risk failure is precisely what's necessary in the most impoverished communities of the world. Hope becomes the difference between a good life and a "living death" as the end, blinding stage of trachoma often is called.But if I've learned anything from patients, it's that a willingness to risk failure is precisely what's necessary in the most impoverished communities of the world. Hope becomes the difference between a good life and a "living death" as the end, blinding stage of trachoma often is called.
There have been some successes in Ethopia: using our measure of facial cleanliness, the cleanliness of children in programme areas has gone up from 30% to 70%; at the individual level, we see victory in every successfully operated and satisfied patient who comes away with their sight preserved. And these individuals make up a large group – 229,000 people and counting.There have been some successes in Ethopia: using our measure of facial cleanliness, the cleanliness of children in programme areas has gone up from 30% to 70%; at the individual level, we see victory in every successfully operated and satisfied patient who comes away with their sight preserved. And these individuals make up a large group – 229,000 people and counting.
The Ethiopian government deserves credit for expanding the programme – diverting tens of thousands of hours of staff – and placing a new emphasis (since 2006) on primary health care with the launch of the nation's health extension worker plan. Other governments can learn from Ethiopia's emphasis on being flexible in primary care to provide care for what's needed at the grassroots and developing a human resource plan that includes integrated eye care workers.The Ethiopian government deserves credit for expanding the programme – diverting tens of thousands of hours of staff – and placing a new emphasis (since 2006) on primary health care with the launch of the nation's health extension worker plan. Other governments can learn from Ethiopia's emphasis on being flexible in primary care to provide care for what's needed at the grassroots and developing a human resource plan that includes integrated eye care workers.
Other organisations may follow Ethiopia's example of holding themselves and their programmes accountable. However, there remain tremendous challenges.Other organisations may follow Ethiopia's example of holding themselves and their programmes accountable. However, there remain tremendous challenges.
In terms of logistics, it's difficult to build healthcare capacity in rural villages. Constructing latrines on rocky mountainsides remains an engineering conundrum. Medicine delivery is delayed by the rainy season. Surgeries are not being conducted at capacity because the electricity goes out at a clinic for hours at a time.In terms of logistics, it's difficult to build healthcare capacity in rural villages. Constructing latrines on rocky mountainsides remains an engineering conundrum. Medicine delivery is delayed by the rainy season. Surgeries are not being conducted at capacity because the electricity goes out at a clinic for hours at a time.
In terms of economics, giving health workers an incentive not to emigrate in search of better economic opportunity is a challenge that keeps myself and many of my partners up at night. It is important that we accept the fact that quality staff will seek more responsibility, more challenges, and want to affect policy, which means they likely will want to move on to new opportunities.In terms of economics, giving health workers an incentive not to emigrate in search of better economic opportunity is a challenge that keeps myself and many of my partners up at night. It is important that we accept the fact that quality staff will seek more responsibility, more challenges, and want to affect policy, which means they likely will want to move on to new opportunities.
We should prepare them to go further and do great things. At the same time, we must continue to instil the belief among grassroots staff that there are huge merits to providing the services they do, and that there is tremendous pride to be gained from helping their compatriots. By encouraging best practices in supervision and instilling local pride in projects, we can ensure that staff not only remain committed to their work but also feel rewarded by it.We should prepare them to go further and do great things. At the same time, we must continue to instil the belief among grassroots staff that there are huge merits to providing the services they do, and that there is tremendous pride to be gained from helping their compatriots. By encouraging best practices in supervision and instilling local pride in projects, we can ensure that staff not only remain committed to their work but also feel rewarded by it.
But we must keep on working, fine-tuning processes, and recruiting new surgeons. Most importantly, we must continue to learn from the perseverance of the people we serve. Let none of us be blinded by fear of failure.But we must keep on working, fine-tuning processes, and recruiting new surgeons. Most importantly, we must continue to learn from the perseverance of the people we serve. Let none of us be blinded by fear of failure.
Dr Paul Emerson is director of the Carter Center's Trachoma Control Programme, which, in partnership with the Ethiopian government and Lions Clubs International Foundation, seeks to end blinding trachoma in Ethiopia by 2015. Dr Paul Emerson is director of the Carter Center's Trachoma Control Programme, which, in partnership with the Ethiopian government and Lions Clubs International Foundation, seeks to end blinding trachoma in Ethiopia by 2015.
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