Tag Archives: NTDs

Fighting Neglected Tropical Diseases: The case for participation and human rights based approaches

This is an excerpt from a blog written by CBM Senior Advisor for Neglected Tropical Diseases (NTDs) – KH Martin Kollmann for the International Coalition for Trachoma Control.

Neglected tropical diseases (NTDs) are causes and consequences of poverty, disability and marginalization. They disproportionately affect the world’s poorest communities and can have profound physical, mental, social and socioeconomic effects on those who lack the resources for prevention, treatment and care. Thus NTD programs can be viewed as an investment in the poorest and most marginalized communities and a critical step towards reaching the 2030 Sustainable Development Goals (SDGs).

Have a look at CBM’s Neglected Tropical Diseases Report 2017.

In order to achieve the SDGs we must ask ourselves how to best minimize the adverse effects of NTDs. What measures do we need to put in place to ensure those affected are not sentenced to poverty, marginalization, discrimination or exclusion?

Hint: Key answers lie in participation and human rights based approaches.

The involvement of communities and people affected is not a new concept in primary health care and disease programs. Many international human rights treaties explicitly state that all people have the right and duty to participate individually and collectively in the planning and implementation of their health care. However, the active participation of people affected by NTDs is not always a reality. Human rights based approaches to NTDs emphasize that any interventions should be based on the principles of participation, non-discrimination and accountability.

Treaties and conventions like the Convention on the Rights of Persons with Disabilities recognize and codify the rights of persons who are disabled, women, children, indigenous peoples and other marginalized groups. People with NTDs often fall into several of these mutually overlapping categories, which is why participatory and human rights based approaches are particularly relevant in the design and implementation of our programs and our advocacy work.

NTDs can cause chronic disability and are highly stigmatizing, which often leads to discrimination, marginalization and exclusion. In many countries, two thirds of persons with disabilities are unemployed and those who have jobs often only work part time. This is particularly true for people who experience advanced trachoma, the world’s leading infectious cause of visual impairment and blindness.

Trachoma, like other disabling NTDs, reduces economic productivity and increases social exclusion, which can cause family breakdowns and abandonment. As a result, many women, who are disproportionately affected by the disease, downplay or conceal visual impairment and pain for fear of exclusion or stigmatization. Similarly, other disabling NTDs can lead to severe stigma, associated mental health problems and social exclusion. These social consequences are often described by the affected as the greater disability.

76 year old Musamba (centre), who is blind from Onchocerciasis (River Blindness), receives Mectizan tablets from our project workers in DRC.

76 year old Musamba (centre), who is blind from Onchocerciasis (River Blindness), receives Mectizan tablets from our project workers in DRC.

Participatory and human rights based approaches, such as Disease Management Disability and Inclusion (DMDI), address these often-neglected aspects of NTD work as a crosscutting theme. They are guided by the principal that people and communities affected by NTDs are essential to the success of programs. Having experienced the disease, disability and associated discrimination, people affected by NTDs have a unique voice and perspective, they bring passion to the work and take the programs closer to the communities they are designed to benefit.

Placing persons affected by NTDs at the center of our program work requires a major paradigm shift, which has profound implications on how services are planned, delivered and evaluated. However, examples from the field have shown that when affected people and communities are given ownership to actively plan, implement and evaluate activities, it leads to better outcomes, improves cost-efficiency and enhances sustainability.

Participation and human rights based approaches are particularly relevant for the last mile of NTD elimination. By enhancing the recognition, systematic inclusion and valued participation of affected people and communities, these approaches assist in creating sustainable, comprehensive and inclusive NTD programs that are fully integrated into national health systems.

In 2015, the international community explicitly recognized the importance of NTDs, calling for their end in SDG 3.3. Moreover, through SDG 3.8 the international community reiterated its commitment to the equality and human rights of all people by including universal health coverage as a key goal – a principal that lies at the core of our NTD work. With over one billion of the world’s people affected by NTDs, it is clear that upholding these human rights will have to happen in a sustained and participatory approach if we are to achieve our goals with no one left behind. The NTD community should be at the forefront of making this a reality.

Trachoma outreach camps targetting Uganda’s poorest communities

This is a guest post which initially appeared on CBM UK‘s blog, written by Andrea Brandt von Lindau, CBM UK’s Trachoma and Eye Health Programme Officer.

 

CBM has been running Trachoma outreach camps in Uganda since October last year. I recently had the opportunity to visit a CBM Trachoma outreach camp in Uganda.

The camp lasted for one week and clearly involved a great deal of planning and preparation. Staff from CBM’s local partner organisation, the Benedictine Eye Hospital, based in Tororo, spent each day in a different local health centre in the target sub-district, where they set up an operating theatre for the day. TT surgeons from the local district, who were trained by our programme, operated all of the Trachoma patients who attended the camp each day. Patients returned the following day to have their bandages removed and to be given eye drops with instructions of how to look after their eyes. Surgery patients were also given antibiotics to prevent reoccurrence of the infection.

Joyce has Trachoma and is receiving surgery at the Benedictine Eye Hospital outreach programme funded by the Queen Elizabeth Diamond Jubilee Trust

Joyce has Trachoma and is receiving surgery at the Benedictine Eye Hospital outreach programme funded by the Queen Elizabeth Diamond Jubilee Trust

One major logistical challenge during these outreach camps is patient mobilisation, not only in terms of finding patients and encouraging them to seek help, but also transporting them to the outreach site and back home. CBM uses radio adverts and the ‘town crier’, a car with loudspeakers which drives around the villages and makes public announcements to make people aware of an upcoming Trachoma camp. In addition, CBM has started using so-called ‘case finders’, a method which has proved extremely successful. In Uganda, case finders are usually members of existing Village Health Teams, who are trained to inform people about different health issues and possibilities for treatment and/or prevention.

CBM’s Trachoma programme has trained a number of case finders to make an initial Trachoma diagnosis and counsel people to encourage them to seek treatment. The latter can be extremely challenging because people are often suspicious or fearful of undergoing surgery. However, now that the Trachoma outreach programme has been running successfully for some time, people hear more and more success stories from former patients. As a result, more new patients are now coming forward for surgery. All patients will also receive counselling at the camp itself where they are being told about what the surgery entails and where they can ask questions. Some people will still refuse surgery at the camp, but this is usually a small minority. CBM also provides transport for patients who live too far from the health centre to walk there and who can’t afford transport, which again increases patient numbers.

The outreach camps also see a large number of patients who do not have Trachoma but all kinds of other eye problems. Some issues, e.g. allergies, can be treated with eye drops; however, many other patients require further treatment such as Cataract surgery. This has created a significant need to complement the trachoma camps with Cataract surgery camps. Currently, Cataract patients’ details are recorded so they can be notified the next time a Cataract camp is held. In future, Trachoma and Cataract camps could be organised concurrently, meaning that Cataract patients would no longer have to wait for treatment. In any case, the treatment of other eye diseases is of course extremely important, not only to help as many people as possible, but also to maintain people’s trust in the programme and ensure that patients keep attending. The saddest thing to see is when patients attend the camp who have already suffered irreversible sight loss through diseases like Glaucoma and who have to be told that they cannot be helped. These patients are also referred to the counsellor who will explain the difference between their problem and those of other patients who can be helped.

Joyce at the Benedictine Eye Hospital for surgery

Joyce at the Benedictine Eye Hospital for surgery

Something else that struck me is how many people had other disabilities, in addition to Trachoma. This could be other eye issues like Cataract or physical disabilities. One elderly man whose bandages were removed following his Trachoma surgery told us he still couldn’t see anything, due to Cataract. He will now be added to the list of patients who will be alerted the next time CBM will hold a Cataract outreach camp in the area which could be several months later. Benyamen, an Ophthalmic Assistant who screened patients at the camp, talked about meeting a number of elderly women from some remote villages at a recent Cataract camp, who, in addition to having Cataracts, were unable to walk, and had never accessed health services before.

At the Trachoma camp, we met Joyce who is unable to walk and therefore very reliant on her daughter in her every-day life. Her daughter had found out about the camp from a local case finder and the camp vehicle picked Joyce up from her home. It is good to know that she has now received the surgery which will save her from going blind, as this would have made her mobility issues even worse; however, as a disability organisation, I feel that CBM should be providing support for her physical disability too, and was glad to hear that our project team is currently sourcing a wheelchair for Joyce.

CBM will continue to conduct TT surgery in Uganda. This work is complemented by the distribution of antibiotics which prevent the infection and other organisations working to improve water and hygiene standards. The ultimate aim is to eliminate Trachoma in Uganda.

Watch Joyce’s story on YouTube.

 

Hands on experience at the NNN meetings

Yesterday at the NNN meetings I met Christopher Ogoshi, programme coordinator at CBM’s partners from Nigeria – the Health and Development Support Programme (HANDS). HANDS Nigeria’s main focus are Neglected Tropical Diseases (NTDs) and eye care. Their programmes are implemented in 4 states across Nigeria – Yobe, Federal Capital Territory (FCT), Kano and Jigawa. In 2014 HANDS Nigeria’s ochocerciasis programmes reached over 2.5 million people, and their LF programmes over 9 million.

Christopher Ogoshi

Christopher Ogoshi

Chris and I had a pretty interesting conversation. I was very keen to know the importance of the NNN meetings for organisations on the field and what these findings translate to for their field work. This is what Chris had to say about it:

‘’Meetings such as this one formulate current issues for elimination of NTDs. Our presence here is to be able to get first-hand information about the current situation regarding NTD elimination, as well as the future scenario. There is a lots of new and exciting information here – new avenues for us to be able to know what the current world is doing in NTDs. Sometimes we also have side meetings or informal gatherings to share information, experiences and best practices with other partners. There is a tremendous amount you can learn from people coming from the field- their stories and opinions are of paramount value. These forums allow for more interaction between developed and developing nations, they are an opportunity to know about new methods being employed and how they are succeeding. We also meet important future donors at such meetings. We get to know who is providing funding. We can network amongst each other and see if our methods on the field are corresponding to these global strategies.

Inviting people from the field is important, because your work is for people in poor communities across the globe, so our input and suggestions will make your work even more effective. It is an advantageous give-and-take for everyone involved.

The outcomes of this meeting will be discussed with our field officers- new findings and learnings, better ways to coordinate our work, improved strategies, ways to capitalise our current work and strengthen our projects and situate ourselves vis a vis other NGOs. This will help us plan ahead and modify our strategies if need be. ‘’

The NNN meetings began yesterday, and it’s already clear that the success of NTD contra elimination depends on collaboration amongst various stakeholders- NGOs, UN agencies, governments, DPOs, healthcare professionals etc. Forums like these facilitate meetings and discussions where active partners involved in NTDs worldwide come together to learn and share experiences.

The plenary sessions begin tomorrow where we discuss successes and challenges for NTDs with respect to MDGs and the post-2015 process, paying particular attention to WASH and health systems strengthening. More in the next post!