NTDs: disease control is about much more than drugs

http://www.theguardian.com/global-development-professionals-network/2014/jan/09/ntds-diseases-disability-prevention

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One of the top three recommendations of the latest annual report of the UK Coalition Against NTDs is to "ensure that NTD control and elimination programmes reflect the full range of care and include morbidity management and disability prevention components to promote stigma reduction, support for mental health care and livelihood initiatives."

Since NTDs are diseases that cause disabilities, it might seem like stating the obvious. Yet morbidity management has been overshadowed by the successful drive to scale up prevention efforts with mass drug administration (MDA) over the last decade. In 2011, out of 73 lymphatic filariasis (LF) endemic countries, 53 had prevention programmes in place but just 27 had morbidity management initiatives. "We're talking about neglected diseases but morbidity management is the neglected part of NTDs," says Dr Pierre Brantus, NTD medical consultant at Handicap International.

It's surprising he says, because the drive to raise awareness about NTDs in the first place was motivated by the diseases' terrible effects: trachoma and onchocerciasis blind; LF results in enlarged limbs (lymphoedema) or fluid accumulation (hydrocele), generally in male genitalia; buruli ulcer, leishmaniasis and leprosy disfigure and disable.

Prof David Molyneux, senior professorial fellow at the Liverpool School of Tropical Medicine, says that NTDs also take a severe toll on the mental health of patients, something that's been relatively overlooked until now. "Studies suggest that there is a high prevalence of depression in NTDs because of the stigma the conditions carry and the effect they have on people's lives and this hasn't been taken into account in assessing Dalys [Disability-adjusted life year, the measure used to calculate the burden of a disease]," he says.

So why has morbidity management taken a back seat despite these compelling arguments? "It is much easier to give drugs once a year to stop transmission than to provide surgery, disability prevention or mental health services," says Molyneux. Most of the drugs used in MDAs are donated by pharmaceutical companies so the cost is relatively low too, around £0.5 per person per year. Morbidity management by comparison is complex and expensive; efforts have therefore been inconsistent, with some countries faring better than others.

Even for diseases like trachoma, which has successfully included morbidity management from the outset as part of the elimination strategy Safe (surgery, antibiotics, face washing, environmental hygiene), the results are mixed. "In theory, trichiasis [the advanced stage of trachoma when eyelashes turn inwards] surgery is simple and the idea was to train nurses in every district to carry out the operation," says Prof David Mabey, professor of communicable diseases at the London School of Hygiene and Tropical Medicine. "But in practice nurses might only do a couple of operations every now and then, so the outcome isn't good. Some studies have found recurrence rates of trichiasis of 20-30%. If done well, it should be less than 10%."

As well as ensuring quality, there is a question of access and costs. Around 4.6 million people need trichiasis surgery, which costs $40 (£24), and the International Coalition for Trachoma Control says it will take until 2032 to clear the backlog. Similarly, there are 25 million people suffering from hydrocele for whom surgery would be a lifeline, but the procedure is delicate and costs $50-100 per patient.

Surgery is not the only aspect of morbidity management however. There are measures to do with hygiene, exercise and personal care (such as limb elevation) that patients can follow to prevent or manage their disabilities and improve their quality of life. The WHO recently published guidelines for morbidity management in LF. Brantus says that the package of care was designed to be simple and implemented at community level.

As well as having an obvious, often immediate impact on sufferers' lives, there is evidence that morbidity management reinforces prevention work. "If you take care of patients affected by onchocerciasis or LF, people in the community are more willing to take part in MDAs; they trust the people who give the tablets," says Brantus.

Molyneux says that the focus on prevention allowed the NTD movement to gain momentum. "We are getting $2-3b worth of free drugs which will prevent disability for future generations, this is a real achievement," he says.

Dr Neeraj Mistry, managing director of the Global Network For NTDs, an advocacy group that runs the END7 campaign to eliminate NTDs, says that the focus on prevention was a simple but efficient message to raise awareness about diseases that were unknown among the general public. "If we'd bombarded people with the complexities of the programmatic approach to eliminate NTDs, we would have lost people," he says.

End7 notably launched a video showing horrified celebrities watching footage of people infected with NTDs. The images are pretty graphic and Mistry says that the video has been one of their most successful initiatives: it has been watched nearly half a million times and achieved a high ratio of donation per view.

Molyneux says that the reticence of media to show images like those in the END7 video is partly to blame for the relative lack of interest in morbidity management.

Brantus says that more advocacy should be done among donors to scale up morbidity activities. Disease communities should also work to address the bias towards prevention, he adds. "In Brighton [at the annual non-governmental development organisations' NTD meeting], the WHO recognised that we had underestimated the morbidity management component in NTDs. I think this will help in future."

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