During 2008/09 LEPRA Health in Action has successfully scaled up its operations in the central state of Madhya Pradesh in India.  From supporting two projects in the state, LEPRA now supports six projects having the potential to reach and improve the health of around 20 million people.

Most of these projects, tackle not just leprosy but also HIV, TB and community health through a combination of health system strengthening, promoting a multi-sectoral, coordinated response, community mobilisation and capacity building of civil society organisations.

In the South Eastern corner of the state, a project supported by LEPRA and the Big Lottery Fund has now completed its first year.   

This project, Better Choices for Better Chances, or Buniyad (foundation) as it is known locally, focuses on areas inhabited by vulnerable indigenous tribal communities such as the Bhil, Bhilala, Padlya and Barela.  The literacy level is very low (4% female literacy in some areas), poverty is widespread and most tribal people prefer to live on their land so are cut off from government health services.  They prefer to approach traditional healers when a skin patch appears and when deformity occurs the person affected is ostracised from his/her family and community.  There are reports of some people who are buried alive. 

There is a strong fear of leprosy amongst the tribal community and people try all sorts of remedies to get rid of the disease only turning to the government service providers as a last resort.   Since leprosy is thought of as a skin disease by villagers, the traditional treatment usually involves preparing paste of leaves, herbal medicines (roots, barks), and these pastes are applied in the affected areas especially on the pale patches on the skin that are usually the first sign of leprosy.   A disbelief in the government health system is reinforced by widespread scepticism about the effectiveness of western medicines and the unofficial expenses (travel, food and formalities) for treatment.   Lack of information about the course, duration of treatment and counselling, results in patients who skip medicines and revert to traditional remedies.  This inevitably leads to complications, increased chance of disability and social stigma.

One of the project’s strategies to increase case finding is to sensitize private practitioners about Leprosy, TB and HIV and the importance of referring patients to access the correct treatment.   As a result the number of referrals increased from those practitioners. They are more in touch with the villagers and villagers trust them in terms of treatment and believe what they say, often more than government health workers.  Getting referrals from private practitioners has been quite smooth after LEPRA provided them with an in-depth training/sensitization programme. The referrals are tracked with the help of referral slips provided by LEPRA’s community health workers to the private and register medical practitioners.

LEPRA is currently not implementing direct activities with traditional and faith healers, like it does with private and registered medical practitioners, as this will happen in the second phase of the project.  A major barrier is that the traditional practices are not always recognised by the government.  The traditional healers show apprehension in being part of any programmes believing that the government will abolish their practices.  Thus the project faces a complex cultural and political clash. Traditional healers request LEPRA to provide certificates from government acknowledging their services, but this is not within LEPRA’s remit and may threaten government relations. LEPRA is currently only involving traditional healers in our programme as providing referrals but the traditional healers demand more participation and involvement.

Consequently, our community health workers are building rapport with the traditional healers. The village level health workers (Auxiliary Nurse Midwives and Accredited Social Health Activists) who have been trained and mobilised by the project, interact with traditional healers in the villages.   The health workers recommend the traditional healers refer patients to hospitals for consultation and help in completion of treatment process. This strategy is used so that the traditional healers accept our health workers and at the same time refer patients to nearest hospital.   

The early impact of the project can be seen by an increased number of referrals and new cases being detected.  For example, people trained by the project referred 98 cases as suspected leprosy, out of which 59 cases were diagnosed, confirmed and put onto treatment.  1,255 people have been referred for TB testing and 310 people for HIV testing.   Of those tested, 24% tested positive for and were diagnosed with TB. 

So far, almost 30 thousand people have participated in LEPRA’s health education and outreach activities.  These include puppet shows, Inter-Personal-Communication sessions, film shows, exhibitions, group talks, home visits and street plays.   Messages are designed not only to increase awareness of the diseases but also to address the high levels of stigma and discrimination in the community.

Although there are encouraging signs of progress, it is too early to tell the impact of the project’s activities on reducing stigma and discrimination.  Indeed, there is still a long way to go.  A survey commissioned by the project interviewed 900 people and indicated high levels of stigma and discrimination in the community.  About a quarter of the respondents stated that they will sever all ties with the relatives/family of a person infected/affected by leprosy and the vast majority of respondents admitted that they would ask a family member who was infected/affected by Leprosy to leave the house. 

The study also found that on average, the health care expenditure of individuals in this area is found to be about Rs.2,000 per year.  Considering that many of the respondents were way below poverty line (earning less than Rs.2,500 per year) this is extremely high proportion of their income at 80%.   It is assumed that not only are people paying private and traditional healers but ‘under the counter’ payments are occurring between patients and government health providers.  To tackle this will take a lot of work and behaviour change.  Perhaps the most effective strategy is to empower the patients to demand their right to free treatment as pronounced in the TB and HIV patient charters respectively and which LEPRA is currently making accessible and disseminating to people in India. 

In India, there is currently no Leprosy Patients' Charter detailing rights and responsibilities when it comes to health care provision: perhaps it is timely for one to be developed, with full participation and leadership from those people affected by leprosy.  Or, can the rights of those people affected by leprosy be incorporated into the disabled person’s charter and this more widely disseminated?   Will the elimination of discrimination happen in the lifetime of this project?  Only if people affected by the diseases we ‘treat’ are at the centre of the solution.



Ceri Angood, PgDip Public Health
E-mail: CeriA@leprahealthinaction.org

Contributions from Buniyad Project staff: S. Shrestha: Project Co-ordinator , A. Haldar: District Co-ordinator and K. Bhandarkar: Medical Advisor

 

Note: The views expressed in this article are of the author’s alone with the intention to promote discussion and lesson sharing  and do not necessarily reflect the views of LEPRA as an organisation.   

Categories: Field Activities, Members