The Role of Primary Care Centers and NGO's

“Since 1955 till 2004, our country had a vertical leprosy program, which has been merged with the GHC system”

One of the debates that my GPP 105 Literature Review tried to address was the role of Leprosy NGOs, along with the role of the government clinics.  Many of the articles I read stated that integrating Leprosy treatment into Public health centers was effective, and there was no need for NGOs to treat Leprosy patients.  As a result, I concluded that the role of the public health centers was to detect and treat Leprosy, while the NGO’s role was to diagnose and treat complicated cases of Leprosy and have disability prevention programs.

However, everything I have witnessed so far has shown me otherwise.  My experience in the Bombay Leprosy Project has shown me that Leprosy is an extremely complicated disease, and is very difficult to diagnose.  There were several cases that I have witnessed in which the patient went to see a general practitioner and the general practitioner was unable to correctly diagnose the patient.  For one case, the patient was undiagnosed for several years, resulting in him infecting many of the people close with him.  Instead of referring him to BLP or a dermatologist, the general practitioner tried to treat the patient by giving him injections.  As a result of the patient being left untreated, not only was his bacteriological index extremely high, but his sister displayed hypopigmented patches, one of the signs of Leprosy.

This is one of many cases in which the patient was left untreated because of misdiagnosis.  Another patient visited not only a general practitioner, but many other physicians before he was lucky enough to have an orthopedic test him for Leprosy to rule it out.  There is no proper way as to how Leprosy should be treated.  By integrating Leprosy into the General Health System, there has been less of a stigma towards the disease.  However, general practitioners need to be aware of the signs of Leprosy and when they should send the patient to a Leprosy NGO.  In order to aid in Leprosy eradication efforts, Leprosy must be caught early in order to reduce the chance of disability and infection to others.  People diagnosed with Leprosy should be sent to Leprosy NGOs in order to be treated, manage reactions, and start disability prevention programs.   

Vimala Centre

Today I went to Vimala Centre in Versova, a Leprosy Hospital specializing in inpatient care.  This hospital was an example of vertical integration, as the care given was Leprosy-specific and patients with ulcers or disabilities stayed in the hospital for continuous treatment.  This visit made me even more grateful for choosing to intern at Bombay Leprosy Project, and showed me the difference between Leprosy NGOs. 

Vimala’s facilities were a lot nicer, as the complex was huge compared to BLP’s facilities.  Most of the patients in Vimala had Grade II deformities, significantly more than those at BLP.  When I asked about ulcer and disability care, the employees told me that they were only offered as part of inpatient care.  This showed me the emphasis that BLP put on preventative and self-care. 

The second part of my visit consisted of visiting the inpatient rooms.  This visit made me extremely solemn, as I saw at least five beds crammed in one room.  Many of the patients were missing limbs and had deep ulcers.  While some were grateful for the care they were getting, others were extremely sad.  One moment that I remember extremely well was when I entered a room and I noticed a patient curled up and shaking.  While all the others seemed to welcome our visit, the man was curled up on his bed shaking.  Because at BLP, I am able to interact with patients, even with a communication barrier, I tried to approach the man.  However, the man turned away whimpering.  This interaction prompted me to ask the employee about psychological services, in which she told me that there were none. 

The inpatient rooms seemed very lonely, as none of the patients I saw had visitors.  Instead, they were surrounded by reminders of the disease they had.  This made me realize that the integration of Leprosy care into the General Health System was a good thing, as it helped get rid of the stigma towards the disease. 

Overall, my visit to Vimala Centre was an informative one, as it showed me another approach towards the treatment of Leprosy.  Vimala Centre stressed immediate care of the patient, while BLP stressed both immediate and preventative care of the patient.  

Rural Village Program

Rural Village Home

Today, I went to the rural area outside of Mumbai.  There, I witnessed the interconnected network needed for Leprosy treatment and prevention.  The villages were all separated from each other and each village had one or two Leprosy patients.  All the patients completed Multi-drug therapy (MDT) treatment, but all of them needed supplies for disability prevention and treatment. 

BLP goes out once a month to provide these supplies to the Leprosy patients in the rural areas.  I went with members of the BLP satellite clinic, and we saw approximately twenty patients over the course of nine hours, showing how difficult it is for patients who don’t have access to transportation or clinics to receive health care. 

Rural Village Home

This experience has also shown me how extensive BLP’s network is.  Not only does BLP work with people in Mumbai, but it also reaches out to the rural areas, something that is extremely difficult to do.  In order to achieve this, BLP has a volunteer in each village who visits the village members afflicted with Leprosy and contacts the organization if there is a new case of Leprosy.  This is a form of community-based prevention, as the volunteers are all members of the community who know everyone in the villages, and know the cardinal signs of Leprosy.  Not only is this more effective, as volunteers will be able to detect incident cases faster than the BLP workers, but there will be less of a stigma towards Leprosy. 

Rural Primary Care Center

Throughout my experience here, I have realized the need to learn more than one language.  Everyone in India knows at least two or three languages.  Finding that out has humbled me because they can communicate to such a big range of people.  I've realized that I need to learn another language if I want to communicate to a greater range of people.    

Internship Week 1

16/6 Busy clinic. Observed.
17/6 Slow clinic day.  Looked through a leprosy presentation, observed, and read leprosy textbook.
18/6 Observations, slow clinic, finished textbook.
19/6 Observed diagnosis, treatment, and disability prevention/rehabilitation, went to Bandra clinic (satellite clinic)

This week's experience at the Bombay Leprosy Project has been extremely eye opening.  I did not realize how complicated leprosy was, and the amount of care that it required.  When I was corresponding with Dr. Pai, before the internship, I specifically told him that I studied leprosy as part of GPP 105, and that I did not need to spend the first couple days learning about the disease, the treatment, or the disability prevention/rehabilitation program.  I, however, was wrong.  There are so many different types of Leprosy, and each type has its different signs and treatment regime.  Although I've already spent the week learning about the disease, and observing the physicians, there are so many questions I have, such as why are there still reactions after treatment, and what causes relapses.

However, even with all that I'm learning, spending my time observing is stressful, especially when I hear about all the other projects that the other students in the Global Internship program have started.  Work culture here is also extremely different.  The US work culture is more monochronic, where people are always focused on one task and work at a fast pace.  Nevertheless, India has a polychronic work culture in which the employees will work on multiple activities at a slower pace.  People in India also value building relationships a lot more than getting work done as quick as possible.  As a result, there are several tea breaks throughout the day, and the employees will pause to talk amongst themselves.  The laidback feel that the physicians and employees have is extremely different from the hustle and bustle of a doctor's office.

It is amazing how many people are affected by Leprosy, each person extremely different from the other.  One thing that stood out to me was two 18 year old females.  One had no lesions, but had a clawed (disfigured) hand to the point that there was almost no muscle in her palm.  She waited 5 years to come to BLP, and even with reconstructive surgery, her hand would probably only return to 20% function.  Another girl presented with several lesions, hinting at a type II reaction.  To me, nothing looked wrong with her apart from her lesions on her arm, showing me how difficult it is to diagnose and treat for Leprosy.  Both cases showed me how the same disease can affect two people so differently.

The highlight of my week was the Bandra Clinic, most likely because it was something that was different from the main BLP center.  Because it was part of a government hospital, the doctors from BLP would rarely go to the clinic.  As a result, the patients were already waiting for the us when we arrived.  At the clinic, I witnessed various cases of Leprosy, and the severity of the disease when left untreated.