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Tuesday, January 29, 2013

Leprosy and eHealth

I found this story  in my Google Reader I think because my search query for RSS news feeds is set on Health informatics and bioinformatics. The focus of the article is the fund raising of David Bousfield for leprosy. I think Google picked up that David was "an expert in biomedical publishing and informatics". Anyway, who doesn't think leprosy is a terrible disease? We don't see it much here in Canada, but I have seen it in Guatemala, South Korea, Nepal and quite up close in India. Seeing it in South Korea was very rare until I remembered that a friend of mine worked there with the Peace Corps in the 1980s helping treat persons with leprosy.  In India, one may meet persons with leprosy on almost any given day of the week, or so it might seem.

Maybe there can be an eHealth solution to assist in this cause, as David says:

“Being a repeat rider you become aware of how global healthcare is evolving. What Lepra originally did was distribute drugs, but these days it’s about information. The drugs are there but it has become more focused on making that link between somebody who has the disease, where the drug is and what you’ve got to do to get it.”

Just get some recycled cell phones, and a used computer to act as a messaging server, and an SMS system can really do wonders in terms of collecting information and helping to create a support structure. It has been done successfully by FrontlineSMS all over the world. Of course some persons with this disease are not going to be able to handle a cell phone, and that's were some other forms of adaptive technology might come in. For example, isn't Google Glass kind of a hands free voice activated system?

Yes, I know that lepers wearing Google Glass isn't going to happen overnight and Google Glass isn't on the market yet in order to create recycled items or competitive items to drive the price down - it is just a fact that new technologies kind of cycle this way and end up on the "bottom of the pyramid" at the same time as they start to support the structures above.

David's £50k helps the fight against leprosy

David Bousfield recently completed his 10th gruelling cycle ride in aid of a charity at the frontline in the fight against leprosy – taking his fundraising total to almost £50,000. He tells LOUISE MARTIN why it’s time to remove the stigma associated with the disease.
Riders and support crew
Riders and support crew
Every two minutes in the world, and every four minutes in India, someone is diagnosed with leprosy. One of the oldest and most stigmatised of diseases, leprosy is a chronic infection of the skin and nerves; left untreated it can lead to loss of sensation in hands and feet, ulcers and deformities, and can even result in blindness.
India is home to more than half of the world’s new cases of leprosy each year. The disease thrives in the country’s poor, overcrowded areas where the chronic condition is easily spread via coughing and sneezing. Every year, the international health charity Lepra transforms the lives of 73,000 people with leprosy by working at the frontline to treat, educate and rehabilitate those affected by leprosy – as well as other diseases associated with poverty and prejudice including TB, HIV, lymphatic filariasis and malaria.

As the world’s first ever leprosy prevention organisation Lepra’s work is crucial, but it can only continue its life-saving work with the support of dedicated fundraisers like Cambridge resident David Bousfield.

An expert in biomedical publishing and informatics, 63-year-old David got involved with the charity in January 1999. “I saw a tiny advert in The Guardian saying ‘Do you want to get fit? Do you want to go to Brazil? Do you want to do something worthwhile?’” he remembers.

“They were all things on my list of New Year resolutions so I thought I could tick them all off in one go.”

The trip to Brazil was based around a 450-mile group cycle ride which helped to raise vital funds for the charity, while visiting some of the communities it works to support. Although interested in the charity’s work, David admits at the time, for him, the real draw was the cycling. “Brazil kind of got me hooked on the bike rides but my attitude has slightly changed,” he says. “To begin with it was an opportunity to go with a group of people and cycle in a country that I wanted to know more about and what Lepra did was the bit on the side. But now, because of the work that I do, I’ve become more interested in how health information is used in developed countries, so it’s an interesting way to learn more about what’s happening in developing countries such as India and Brazil.”

A couple of months ago, David completed his 10th cycle ride for Lepra and took his fundraising total for the charity to almost £50,000. As part of a team of 12 cyclists, he accompanied a Lepra health education van across project sites on a 500km route in the state of India’s Madhya Pradesh. The team was visiting poverty-stricken rural villages, health centres and hospitals to give vital health education. The poor areas have low or no literacy rates so the education team teaches communities how to detect the symptoms of diseases through the forms of plays, puppet shows and films broadcasted from the back of rickshaws.

“Compared to many other diseases, there is relatively little known about the leprosy transmission process, apart from that there is a cocktail of drugs to cure it,” explains David.

David back home in Cambridge
David back home in Cambridge
“Being a repeat rider you become aware of how global healthcare is evolving. What Lepra originally did was distribute drugs, but these days it’s about information. The drugs are there but it has become more focused on making that link between somebody who has the disease, where the drug is and what you’ve got to do to get it.”

Lepra ’s aim is to make people aware of the symptoms and curability of leprosy and other diseases through education and increasing the charity’s visibility. The organisation has 26 leprosy and TB referral centres across India providing specialist services such as testing and treatment for people with TB and physiotherapy and reconstructive surgery for those with leprosy but, despite there being a cure for leprosy, there is no vaccine to prevent infection in the first place and there is still much prejudice associated with it.

One of the aims of the Lepra cycle rides is to help break the stigma associated with diseases such as leprosy. During the trip, David met a father and his two children who live under a tarpaulin on the side of a road. The mother left her husband and two young daughters, Sita and Gita, after they contracted leprosy. “You see all sorts of things which are absolutely horrific. If you remove the stigma that is associated with leprosy and other diseases so that the village actually helps, people in the village will know what the symptoms are and spot the symptoms and then instead of telling people to get out of the village they’ll tell people to get help. The stigma is still very much there but by acting quickly the infection can be stopped. You have to be pretty quick off the mark to come out with no lasting consequences, but you can stop the infection.”

The November trip was David’s fifth visit to India. Previous cycle rides have been in the Orissa region and this was only the second time the Madhya Pradesh route had been undertaken by a Lepra group and, according to David, it was a positive experience. “It was really great,” smiles David. “The weather was perfect – apart from on the last day when it was very hot – but we cyclists love to grumble and I think at the end of the day if you haven’t had a few really tough days then you don’t have stuff to go back and moan about at home!”
The keen cyclist is modest about his impressive achievement, but the living conditions and hazards on the road are not for the fainthearted. “We rode on some motorways but mostly it was on quiet rural roads. There were some that were very badly water eroded so there were lots of potholes, loose gravel and boulders,” explains David. “Indian driving looks a bit chaotic, and it was a bit hairy in places, but the lorry drivers in particular seemed to be very forgiving and would give us a wide berth.”

In order to cover as many miles as possible the days were long and there was no five-star hotel to relax in at the end of a gruelling stint in the saddle. Yet despite the tough conditions on the road, the team only had to deal with three punctures during the whole 500km route and, to reduce the risk of food poisoning, most meals were prepared by the support team. “The quality of the cooking was so good that it was difficult not to put on weight during the ride,” says David. “We start and end in reasonable hotels and then there are quite a number of government properties in between. There was one guest house which was very basic. There was one double bedroom where the four men were and there was a sitting room where most of the women went, but they had to spill over into the hall. There was only one loo which was in the one bedroom.
A family outside their ramshackle home.
A family outside their ramshackle home.
“You do forget the bad times but partly you do know they’re going to be there – there’s always going to be some horrible loo situation!”

David’s wife, Judy, and his two sons, Nick and John, are supportive of his charity work but they haven’t offered to join him on a ride just yet. “It’s just something I do and they absolutely don’t want to come with me,” he smiles.
David has seen first-hand how the vital money he has raised is making a difference and, despite saying that this year’s ride would quite possibly be his last, after just a couple of weeks back at home he is already thinking about next year’s Lepra trip.

“I’ve seen how the money is helping and I suspect if there is another one next year I’ll consider it.”

l For more information about Lepra or to make a donation visit www.leprahealthinaction.org.
louise.martin@cambridge-news.co.uk

40 million cases
40 million people are disabled by lymphatic filariasis. Items as simple as a bucket, soap and special shoes, together with simple techniques taught by Lepra, help people cope
India is home to more than half of the world’s new cases of leprosy each year.
£3 could pay for a special pair of shoes to restore dignity; £5 could pay for a self-care kit to help a patient manage their condition; £25 could pay for a healthworker to visit.
Last year LEPRA helped 700,000 people access diagnosis, treatment and testing.
More than 1.3 billion people worldwide are at risk from infection