NTDs in Nigeria: working together for change

Lymphatic filariasis (LF) is a disease that gets little attention in the global north. Yet according to the World Health Organisation, over 120 million people around the world live with it. The scale of this challenge requires a co-ordinated response beyond anything that CBM alone can provide. Key players like Governments and international NGOs (INGOs) need to liaise more systematically to treat multiple neglected tropical diseases (NTDs). CBM works with a range of local, national and international partners to provide resources to raise awareness with community members, healthcare providers and policy makers about NTDs so that those living with the diseases learn more about the best way to treat and manage their conditions, and that their families, communities and leaders can take steps to prevent the diseases in the first place. This is an area with multiple challenges that cannot be resolved by vertical programmes. Despite attempts to align and co-ordinate NTD work by government departments and INGOs, the most significant challenges remain lack of focus, time and funding allocated to adequate collaboration and alignment mechanisms.

On a recent trip to Abuja in Nigeria, I met a woman with LF who was continuing to carry out all the domestic work and take care of her family. When I asked her: “What impact has this had on your life?” her upbeat response was: “What do you mean, impact?” This gave me an over-riding sense of how accepting people are of this condition, which they have often lived with for many years before they receive any diagnosis or treatment. My visit also highlighted the multiple challenges surrounding LF. One of the most effective ways of eradicating NTDs lies in stakeholders sharing good practices and working together to find solutions – particularly health, education and water government ministries. It is imperative we involve health advocates at all levels, starting at the grassroots, so that communities can take ownership of programmes and the State has a hugely important part to play in promoting and supporting this involvement.

The resilience of the woman I met was humbling, the impact of the disease is far-reaching; it can cause fatigue and fever and impact on aspects of daily life from carrying out daily household chores to being able to carry out livelihood activities. Around 43 million people globally show outward visible signs of LF, while many more suffer from irreversible internal damage. It is one of the leading causes of disability worldwide.

Amena, is aged around 50 and lives in Dukpa, an hour’s drive from Abuja. She first noticed a swelling in one of her legs when she was pregnant with her son, now 18. LF is caused by parasitic worms, and can spread from person to person through mosquitoes carrying tiny, thread-like worms, which nest in and attack a person’s lymphatic system. Amena, like many of those infected with the parasite, was unaware about how she had caught the disease.

Amena manages the condition through medication and washing. She takes drugs once every year. These won’t improve the condition but after five years of taking sequentially, they kill the larvae blocking the lymph nodes, breaking the cycle of the disease. Amena washes up to three times a day with soap. She doesn’t let her condition stop her carrying out housework; she cooks, cleans and goes to the fields, but her leg is heavy and carrying loads on her head gives her back pain. Sometimes a painful episode leaves her housebound for up to a month. She sometimes falls when she tries to stand up and needs a stick to move around. She is fortunate in getting help from her family and a government worker comes to her house to distribute the annual dose.

So much more than medication

It is difficult to monitor patients who need to take a pill once every year. Sometimes they have not been given clarity about the treatment, have no control over their own health or are illiterate. Community members often don’t record birthdays, so it is hard to make this a calendar event. Discontinuing use of the pill stops it being effective altogether and the five year treatment must begin again. Case finders play an important role in maintaining good practices, but for their work to be truly impactful, awareness raising and follow up should continue longer than five years.

Aisha, 16, has lived with LF for most of her life. She initially took traditional medicine and has been taking regular medication for five years, inconsistently. It is hard to reach the area where she lives but eventually she found out about drugs through a community distributor.

She feels pain in her legs; this was particularly bad when the skin of her leg started to peel off and new skin started to grow but tablets calmed down the pain. She bathes every day, recognising the need to get right into the skin’s creases. If she is sitting, she needs to lift her leg to alleviate pain. We talked about the importance of wearing shoes to avoid damage to the skin from sharp objects, which she may not feel on her affected foot. But shoes can often be difficult to acquire and painful to wear if the foot is very swollen. Nobody in her family knew that LF is transmitted by mosquitoes.

Community awareness is a vital part of a comprehensive prevention and treatment approach. With increased understanding about how the disease is caught, diagnosis of early symptoms, and access to clean water to bathe and manage the symptoms, it is much easier for communities to identify the disease at its earliest stages and prevent its spread. This will guard against the irreversible developments which Aisha and Amena have lived with for so long. If we all work together, rather than in silos, our potential to reduce and ultimately stop the spread of this debilitating disease will be significantly increased.

On a visit to Dutse district hospital we met patients with another prevalent NTD – trachoma. Conditions ranged from first stage itching of the eyes to total blindness. The recent recruitment of female case finders has been instrumental in supporting Muslim women with this disease to get treatment. The finders go from house to house to locate people who need support; Rukkaya (pictured standing) had found 70 people requiring hospital treatment since July. We were able to witness first-time trachoma surgery, which is quick and effective; a simple procedure which will dramatically change these women’s lives. Under local anaesthetic, the eyelid can be flipped to prevent the lashes scratching the eye. The operation cannot repair any scratching that has already occurred, but it can prevent it getting worse – if untreated this will cause permanent blindness. Without pain and watering, the patient is able to see again.

Once again, I was struck by the length of time some of patients had lived with this painful disease. Many had resorted to pulling out their own eyelashes to alleviate the scratching of the cornea which leads to thicker hair regrowth and increases the severity of the condition.

Time to unite forces

CBM is working with local leaders to implement NTD programmes and the sea of people that filled two tiny rooms when we met with them in Sabuwa demonstrated the urgency of this work. But we need to work together. NGOs working in affected areas need increased budget lines to ensure effective alignment and complementarity in the work they do. For example; treating neglected tropical diseases goes hand in hand with good sanitation practices; we can no longer look at the two things in isolation. This really hit home after a visit to the Health Centre at Birwin Kudu; while staff used disposable gloves, there was no soap available. Another day, I was shown a stagnant local water source that is a potential hotbed of disease and a pump next to it that is completely inaccessible for some people; reinforcing the need for us to identify solutions together and holistically.

Images: 1st – Kirsty visiting Amena at home, LF has caused Amena’s leg to swell. 2nd – Aisha’s LF was diagnosed relatively early so the swelling is not too severe. 3rd – Washing is a crucial part of managing LF. 4th – Kirsty with some of the women who had come to receive treatment. 5th –  Community leaders have influence at a local and state level and it is important they are involved in decision-making. 6th – Stagnant water sources can be a source of disease and pumps like this can be inaccessible.