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.   

Homeless Visit

Homeless encampment at Mumbai Central

Today, I went to visit a homeless camp as part of my Friday St. Xavier’s College class.  The first part of my visit consisted of a visit to Pehchan in Mumbai Central.  Pehchan is an organization dedicated to the empowerment of homeless individuals.  In order to do this, Pehchan teaches them their rights, provides and creates employment opportunities, creates awareness about homelessness, and fights to give them their identities and rights.  In Pehchan’s office, I learned that many of the homeless are workers who either do not have proof of citizenship or cannot afford to live in Mumbai.  These individuals have been repetitively harassed by the police, evicted from their place of stay and have had their belongings confiscated, robbing them of their dignity.  Some are even sent to beggar camps for periods of time in order to “clean” the streets of Mumbai.  Unlike America, there are no government programs to help the homeless. 

Image taken from Pehchan

For the second part of my visit, we went to visit a homeless encampment in Mumbai Central.  The homeless encampment was surrounded by two luxurious golf courses, showing the juxtaposition between the two.  As we entered, even though we were intruding on their space, the community welcomed with open arms.  As the women started telling us about their story and struggles, I thought about one word—resilience.  Even though they’ve been neglected and pushed away, they still had hope.  This is shown as the women walked up to us to tell us about her community’s situation.  Not only that, but they embraced Brijesh, the director of Pehchan, like he was family.  They talked about how grateful they were to him and everything that he had done for them.  

Uncomfortable Moments

During my time in India, I realized that there is no such thing as space and privacy.  So far, I’ve had four uncomfortable moments in India.   

Moment #1

On July 25, 2014, a group of us decided to visit Elphanta Island before the monsoons arrived.  The journey to Elephanta consists of a 1 hour ferry ride to the island, costing Rs. 150.  When we tried to go upstairs on the ferry, the crew requested a fee of Rs. 10 per person.  We thought that the group before us was able to get on the top for free, so we started to argue with the crew.  However, a group of men paid for us, and we were able to go up.  Nevertheless, I learned that nothing is free.  While we tried to enjoy the view, the men were constantly bothering us to take pictures with them.  We felt extremely uncomfortable and violated.  One of the men kept harassing my roommate, trying to force her to take a picture with him.  When that failed, he tried to take a picture with only me, trying to coax me into sitting on his lap or kissing him on the cheek.  That incident made all of us extremely uncomfortable for the rest of the trip, especially since we kept seeing that group of men around the island.      

Moment #2                    

While my friends and I were visiting the Elephanta caves, many people also kept taking pictures of us without asking for our permission. 

Moment #3

                On the morning of July 10, when I got off my stop, I was immediately greeted with whistles and cat-calls from the men in the train. 

Moment #4

                During the weekend of July 12, I decided to visit Ellora and Ajanta caves.  There, I was swarmed with many Indians asking to take a photo with me, or taking photos of me without my consent.  It got to the point that I could not walk a couple steps without being asked to take pictures with people.  Even refusing was difficult because I would feel bad when kids asked and it did not stop others from approaching me.      

Moment #5
                 After getting off at CST train station, I flagged down a taxi.  The driver and I began to argue how much the taxi fare should be--the driver wanted 50 rupees, and I was requesting the meter price.  After settling on the meter price, he began to try to talk to me, I felt uncomfortable so I tried not to talk to him as much.  Near where I usually got off, he parked the car in a dark corner between two buses.  Immediately feeling unsafe, I told him I wanted to get off and paid him.  As I began to get out, he reached out to shake my hand.  When I shook his, he used him index finger to stroke my palm.  After that, I immediately got out.   

                To me, all five of these moments violated my privacy and made me feel extremely uncomfortable.  It reminded me about the article by the girl from Chicago, about how uncomfortable she felt in India.

  

The ferry ride to Elephanta could have been avoided.  If we paid the fee instead of letting the men pay, then we would not have felt that we had to take a couple of photos with them.  I noticed that if we were back in the US, we would have snapped at the men and threatened to report them for sexual harassment; however, since India was not our home country, we all felt that we needed to be respectful and not cause a scene.  Nevertheless, even though the men were clearly in the wrong, we should have made an effort to at least scare them away from harassing us.

When I talked about the ferry ride with someone at my internship, he told me that there was no reason in trying to be respectful towards the men since they were clearly in the wrong.  He told me that they probably treated us like that because of the common misconception that foreigners were “easy.”  He said that if they kept on harassing us even when we said no, we could have yelled at them or even slapped them. 

The photo-taking was extremely overwhelming for me.  When I tried to think about it, I realized that with America, there is a diverse group of people and cultures, and such a thing does not exist in India.  Although the stares and the photography made me uncomfortable, they did not mean any harm.  Many have probably never seen an Asian or Caucasian woman before, so seeing people from other countries is a huge thing.  Also, to us, it seems like we’re overwhelmed by the amount of people asking for photos, but to them, it is only a couple of photos since they cannot tell how many people are asking for photos. 

I’ve also learned that one’s initial impression may not necessarily be correct.  One pair of guys followed me around the temple of Ellora caves, and I was extremely freaked out.  When I took a picture with a family, I was nervous and I tried to stay close to my friends.  Finally, one approached me, and merely asked me for a picture.  After taking pictures with the guys, both left immediately.  Turns out that the two guys were too shy and nervous to approach me until they saw the family ask me.     

 The thing I must stress is that these moments could have happened anywhere in the world, even in your own neighborhood.  I've documented these moments to let people know that even while traveling, one must always still be cautious of his or her surroundings and interactions.

Although I've posted these uncomfortable moments, they should not be used to make any generalizations about India being an unsafe place.  To me, Mumbai is still an amazing city with such a rich culture and amazing people.  These five incidents are only a few of a tremendous amount of different experiences I've had in India.  

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.  

Week 1

Week 1 of India consisted of orientation, or learning how to get around India.  First of all, the traffic rules here are crazy.  There are no lanes and pedestrians don't have the right of way.  I've learned to always be aware and walk as fast as possible when crossing the street.  The minor has always stressed the importance about integrating yourself with the culture you will be serving in, and I feel that the Global Internships Program did an amazing job with helping the students and I learn about Indian culture from Hindi lessons to shopping for clothing and restaurant excursions. 

Introduction

My name is Janine Myint and I'm an incoming senior majoring in both Public Health and Integrative Biology.  For my practice experience, I will be working with the Bombay Leprosy Project in Mumbai, India.  Along with this internship, I am taking a class at St. Xavier's college and an online course (ISF W187) as part of the Berkeley Global Internship Program in Mumbai.  

The Bombay Leprosy Project is a non-profit organization with the goal of "A World Without Leprosy."  Currently, Leprosy affects approximately a quarter of a million people in the world, with the majority of the cases in India.  Leprosy is a disease that affects the nerves, resulting in disability and disfigurement.  In India, Leprosy is an extremely stigmatized, with many of the infected being dropped off in Leprosy colonies and isolated from the families and friends.  Leprosy is an extremely complicated disease which requires specialized diagnosis, treatment, and disability prevention/rehabilitation.  As a result, NGOs such as BLP work with the government to provide specialized care to those inflicted with the disease.

My project during the program is to create and administer a form that BLP will use to measure the effectiveness of their treatment and disability programs.  These answers will be entered into a database, and be used for impact measurement.