Leonore Küster has been the Representative of the German Leprosy and Tuberculosis Relief Association in South Sudan since 2007. Here she shares thoughts about leprosy control in South Sudan both before and following independence. 

How did persons affected by leprosy celebrate on Independence Day on 9th July 2011?

They celebrated within their community. Nothing special was provided for them to mark this day.

What were some of the thoughts they shared?

People’s initial thoughts were about happiness, the hope of improving their living standard and international recognition and respect.

How have you coped providing assistance to persons affected by leprosy in a country left with little after the longest civil war in Africa?

Together with the implementing partners and the National Programme we have been able to give treatment. Case-finding, follow-up, and disability and social services still pose challenges though. 

What has been the most significant challenge you have had to overcome whilst working with GLRA in South Sudan?

GLRA has worked closely with the National Programme for Tuberculosis, Leprosy and Buruli Ulcer since it began supporting work here. This has presented quite a few challenges, as the National Programme was, at that time, in the early stages of establishment and was managed by one person. It had to cope with a variety of donors (GF, USAID, TB Care and GLRA) and also set priorities among the three diseases. As TB combined with HIV/AIDS is a fatal disease, emphasis was first put on establishing policies, guidelines and services for TB in the country. The true burden of leprosy is not known. As there was only one person in post for more than two years, it was some time before an assessment could be carried out, to determine the services that would be required to help those affected by leprosy.  

I learnt through a news article on the GLRA website that it has appealed to all actors in the international community to help South Sudan establish a sound health infrastructure. To how high a level has this been taken? Is a concerted lobbying campaign underway?

The Government of South Sudan receives a lot of support from various donors and implementing organisations to help it establish its health infrastructure. A concerted lobbying campaign is not under way - rather the Government makes appeals, for example, to Geneva.

The Government of South Sudan has enormous challenges ahead, such as dealing with different ethnic groups, coping with returnees from North Sudan and developing its country, though it has huge potential to benefit the whole population from sale of its oil, gold and other minerals and agricultural products. During its recent years of partial autonomy have state apparatus and an administrative structure been created?

Yes, state apparatus and administrative structures are in place. However, not all levels are functioning yet. The weakest structures are still at the county and payam (sub-divisions of counties in South Sudan, which consist of several villages) level due to lack of qualified human resources. Another influencing factor will be the re-shuffle of personnel in the government departments following independence. 

What is the current state of the health care system? How long is it anticipated will be needed to build a sound infrastructure for health care?

The Government has drawn up a road map for the health system the Republic of South Sudan wants from the grass-roots level up to the national level. The five-year Health Sector Development Plan will concentrate first on the physical structures of the three regional hospitals and the health personnel. Then they will deal with the state and county hospitals and thereafter with the primary health care facilities. The plan has still to be finalised and distributed.

Have you heard what will happen to the National Leprosy, Tuberculosis and Buruli Ulcer Programme?

South Sudan has had its own National Programme since December 2006.The Department of the National Tuberculosis, Leprosy and Buruli Ulcer Programme was run until mid-2009 by one person, but now there is a team with focal points for all three of these diseases. National policy, guidelines, a strategy plan and training manuals have been established for TB. As for leprosy, an assessment has taken place, which will be used to establish a strategy. A draft leprosy policy and guidelines have been developed, but have yet to be finalised, and a training manual on leprosy has still to be developed.

The next global report on leprosy is due to be published in WHO’s Weekly Epidemiological Record this September. When will the Republic of South Sudan begin reporting leprosy data as an independent country?

Talks between the WHO and the National Programme concerning leprosy data as an independent country are underway and, according to the National Programme, it will start next year probably, since the National Programme submits its annual report on leprosy to the WHO by the end of June every year.

There is concern that in a country crippled by conflict and the ensuing displacement of people that the leprosy statistics that have been reported to the WHO Global Leprosy Programme may not have included all cases of leprosy. Having been working for GLRA in South Sudan for around four years now do you have a feel for how extensive the leprosy situation may be?

Recently an assessment was conducted through a consultant for the National Programme and GLRA to find out the burden of Leprosy in the Republic of South Sudan. The report is not yet out, but the consultant stated that the burden is considerable.

What are GLRA’s plans? Will it continue to support the projects in the Republic of South Sudan it is already assisting? 

GLRA will certainly continue to assist the existing programmes, but will also support the National Programme. As some of our implementing partners are in the process of handing over to the Government, our aim is to integrate the vertical programmes into the health structure of the Government. Fact-finding missions are under way to establish how best the Ministry of Health can be supported and strengthened to continue the Leprosy Control Programme.

Can you comment on how GLRA has helped to strengthen the Ministry of Health’s capacity to co-ordinate and supervise anti-leprosy activities since it began offering assistance to persons affected by leprosy in Sudan in 1972?

Until the second war (1983,) GLRA was the donor and implementer for the Ministry of Health in Sudan. For two projects under the Khartoum Regime (Wau and Juba) it continued like this up until 2007. In other areas of the south, it stopped its support for some time, and at the end of the 1990s GLRA supported projects through implementing partners such as church institutions or international non-governmental organisations in the areas controlled by the Sudan Peoples’ Liberation Army. These are vertical programmes.

In 2007 (after the Peace Agreement of 2005) GLRA decided to open a second country office in the southern part of Sudan, which became independent from the Khartoum office in 2008. Since then the South Sudan office has been acting solely as a donor and is non-operational. From the beginning of 2007 onwards GLRA has been providing strong support to the National Programme, which was established in December 2006, as well as to the existing partners and projects.

During the war the Ministry of Health was, in most cases, not able to pay salaries and GLRA supported the Ministry of Health in providing incentives to staff. The implementing partners received funds from GLRA for salaries, administrative and running costs and all other activities. GLRA partially supported the Ministry of Health in renovating existing tuberculosis and leprosy structures within hospitals even before independence.

Since GLRA started working in Sudan it has enabled many health personnel to be trained in TB and Leprosy, either in the country or outside, for example at the All Africa Leprosy and Tuberculosis Rehabilitation Training Centre, ALERT, (Ethiopia) and at Buluba (Uganda). In addition, GLRA has been supporting the National Programme in co-ordinating drugs storage and distribution, logistics and so on with implementing partners.

How will this be reinforced in coming years?

Up until 2010 GLRA also supported TB activities within some projects. Due to financial constraints, and considering that we are the only donor for leprosy, we have stopped this and since the beginning of 2011 we have concentrated our support solely on leprosy. This allows more funds for the National Programme, assessments, and even means that leprosy services can be extended to other areas.

What plans are in place to train doctors, nurses and other health workers in the Republic of South Sudan in leprosy? Will the number and regularity of training courses be increased in the near future?

Every year GLRA has been increasing its funding for training, which was centralised under the National Programme two years ago. Internal training workshops are conducted by the National Programme. GLRA also funds participation in courses conducted abroad such as at Buluba in Uganda. Bearing in mind that leprosy services should be integrated into the Primary Health Care System so as to reduce stigma, more staff in health units and hospitals will be trained over the coming years.

Persons affected by leprosy often face stigma and discrimination, although in some countries this is diminishing, frequently through the empowerment of persons affected themselves. How severe would you say are stigma and discrimination towards persons affected by leprosy in the Republic of South Sudan?

Stigma and discrimination are still pronounced and serious in the Republic of South Sudan. During the war most of the area of South Sudan was not reachable and services could not be brought to the people, and awareness activities could not be carried out. As a consequence, many persons have developed grade two disabilities and are shy to present themselves. Despite the Comprehensive Peace Agreement and development over the last few years, the infrastructure has not allowed us to reach all of the people in some areas. There is still a lack of knowledge.

What measures are currently being taken to reduce stigma and discrimination against persons affected by leprosy in the Republic of South Sudan?

The implementing organisations and institutions, as well as the National Programme, carry out health education sessions in schools and communities to increase awareness or they hold TV and radio talk shows. The latter has the advantage of reaching more people.

What moves you most about South Sudanese people?

Their will, strength and hope for a better future.

I imagine the population’s expectations are high following gaining independence. Are you confident the South Sudanese have the strength, will and persistence to build up their country?

Personally I believe in them and that they will achieve, one day, what they have fought for all of their lives. However, it will be not easy and internal issues will delay the development process or even interrupt it. Building a nation is not a task you can finalise within a few years; it takes generations.

E-mail: leonore.kuester@glra-sudan.net

 

Categories: Sudan