First steps in combating NTDs

For the last 50 years, CBM has been working in the Democratic Republic of Congo (DRC) in the field of eye health. The realisation of the scale of blindness in parts of the country led to a drug distribution programme that now protects almost 50 million people from the debilitating effects of onchocerciasis (river blindness). Dr Adrian Hopkins, ophthalmologist and former Director of the Mectizan Donation Programme, tells the story of how it started.

CBM in the Democratic Republic of Congo - how it all began

Berthine from the Democratic Republic of Congo is blind due to the neglected tropical disease onchocerciasis, also known as river blindness. Her grandchildren receive medication for prevention.

In the early 1980s, CBM expanded its interest in DRC turning to eye work, and rehabilitation. Quite a few new programmes were starting at this time, and some of them happened to be in areas affected by onchocerciasis. At that time, a drug called diethylcarbamazine (DEC) was used to treat onchocerciasis. It seemed to be very effective, maybe too effective as it was also known to cause problems for those who took it. I had one patient who used to paddle me across one of the rivers with my motorbike when I was doing my public health work. There was a lot of onchocerciasis in the area, and he was treated at a local dispensary with DEC. He came in two days later having lost almost all his vision. We worked hard, we got some of his vision back, but he was never able to go back to work, although he was able to see light and vague shadows, he lost a good chunk of his vision through that treatment.

"I remember getting a letter from CBM in the late 70s saying that because of the negative effects of DEC, it was no longer recommended for treatment of onchocerciasis. It was better to leave a patient with the disease and preserve their vision."

Mectizan® – beacon of hope

Without DEC, patients had no curative treatment open to them and it was several years later, at the end of 1987 that Mectizan (ivermectin) was approved for treatment. The drug had been tested in West Africa and became a beacon of hope for patients with onchocerciasis. It killed the microfilaria larvae in the skin, but there was no damage to the eye and over two months, the microfilaria disappeared.

The first time we received Mectizan was in 1988; I was working at Yakusu, near Kisangani, close to the Tshoppo Falls. The area had a high concentration of onchocerciasis, and I was able to treat patients with the drug for the first time.

However, the drug was still only available for clinicians so if patients didn’t come to hospital, they didn’t get treated. It was becoming more apparent that whole populations needed Mectizan and making the transition from clinical to community-based treatment was imperative.

First Mass Treatment In DRC

The first mass treatment with Mectizan was carried out under the auspices of CBM in 1989 in Dimelenge. A team travelled to the village to conduct the cluster-based survey taking skin snips and observing the parasites under a microscope. Mectizan was then approved by the donation programme for mass distribution and a post treatment survey showed the microfilaria in the skin had reduced significantly. However, many other communities were in need of treatment, but the survey process was time consuming and costly – the question was, how to expand?

Survey breakthrough

Nodules are clumps of big adult worms and, unlike the microscopic microfilaria, you can feel them under the skin. It was discovered there was a direct relationship between the number of nodules and the results from costly skin snip surveys. This meant you could go into a village without having Meeting with villagers in Kisangani to take all your equipment, choose a group of villagers and simply check them for nodules. Then you knew that roughly twice the number of patients with nodules would have been positive with skin snips.

Mara, an ophthalmic nurse and community worker of CBM partner Tandala hospital, identified Pasi at her home and added her to a patient list for a relieving TT surgery during a CBM funded campaign.

Expansion

A lot of the work started because CBM was establishing blindness rehabilitation programmes in areas of onchocerciasis. Little could be done for patients apart from rehabilitation, but then suddenly, there was a new drug to prevent people from going blind. Dr Tony Ukety was working for CBM in Nyankunde, in northeast Congo and doing outreach eye work in Uele, where there was a lot of onchocerciasis. He started MDA there with CBM support. A team in Kananga also started doing MDA in the Kasai Region and particularly in the Sankuru Valley. CBM also supported treatment around Yakusu in the Tshoppo area. At the end of 1995, the Africa Programme for Onchocerciasis Control (APOC) was launched. With its approach to public health rather than just eye care, it was the basis of the original NTD programme – with CBM as one of the major partners. Mapping for the disease was expanded, and simpler public health strategies to implement MDA were born.

Challenges

Logistics was a major challenge – DRC is a massive country and transport and communications between areas has always been difficult. In addition, the lack of investment in the health system at that time meant it was a struggle to get treatment going. We consider that onchocerciasis work contributed to building the health system from the bottom up. The community-based treatment approach (CDTI) has been instrumental in this, getting the communities actively involved and taking control of their disease management. It’s not a programme where you chose someone in a community and say ‘OK, go and do that job and we’ll pay you for it,’ rather, community comes together to decide how they are going to do the treatment. All this required a lot of training and was built on to a medical infrastructure that was very weak.

Happy Pasi is recovering after surgery, surrounded by her family and children. Pasi Weke, 30, is a farmer in Northern Congo and a mother of four. She received trachoma trichiasis surgery supported by CBM.

Achievements

The main achievement has been continued support for MDA, sometimes in very difficult circumstances. During the civil war in the 90s, CBM support continued, more-or-less across the board in spite of major logistical challenges. It’s a stand-out achievement for CBM that the organisation strives to continue work even when things prove tricky. Working with CBM in the rebel held north-east, Dr Ukety was importing Mectizan through Uganda because he couldn’t get it through Kinshasa. CBM was the only organisation working on onchocerciasis in DRC until 1995 when APOC started, and in 1997 systematic mapping began and other organisations began taking on areas not yet being treated.

Impact

If you have onchocerciasis, the first symptoms affect the skin and the long-term itching has a massive impact on your life. Mectizan stops this. It also has an effect on other ailments and children benefit from better health due to the medication. Due to these immediate benefits, people have been very enthusiastic to take the drug. It’s hard for us to conceive of people being so chronically infected with parasites that they don’t know what normal health is – Mectizan has given them that new concept of ‘normal health’.

Future perspectives

For onchocerciasis, the only strategy that will keep it under control is to continue MDA; if we stop, the disease will return. It’s been remarkable that the donation of Mectizan has continued for 30 years and that Merck is even increasing donations because it’s now being used against Lymphatic Filariasis all over the world. In DRC, we would have hoped to stop treatment by 2030, but that will probably not be possible since where there is instability, treatment is often interrupted and, transmission of the disease continues. To maintain momentum, we need to make sure that programmes are integrated within a functional health system, with a focus on ‘leaving no one behind’. The hope will be if we can maintain MDA over the next 15 years, making use of potential new drugs, we can finally achieve the elimination of onchocerciasis in DRC.’