Q&A: Henminlun 'Loon' Gangte, President of Delhi Network of PWHA
(Health and Development Networks interviewed "Loon" Gangte, President of the Delhi Network of People Living With HIV (DNP+) and programme manager of Michael's Care Home, Delhi, a 35 bed residential care facility for people living with HIV and AIDS, March 2005). Loon has been providing hands on care for people who are living with HIV and AIDS since 1998. He is energetically involved in local, national and international campaigns to secure better systems for the effective delivery of information and health care for people who are living with HIV, or are drug users and those who provide them with care. These campaigns vary from ensuring a minimum standard of care and cleanliness in public hospital wards to negotiating with pharmaceutical companies about the prices of drugs for people living with HIV.
HDN: Can you tell us something of your personal experience with tuberculosis (TB) in India?
"A friend of mine, who also had been diagnosed with TB, recommended a private practitioner who diagnosed my TB nine years ago. Before meeting this doctor in Imphal, the capital of my state, I had seen four other doctors in my home town. None of them suspected that I might have been sick from TB. All they gave me was bottles of cough syrup. I was very sick - virtually a walking skeleton. I think my weight had gone down below 40kg. Everybody thought that I would die soon. The pain in my chest was unbearable, and even heroin would not give me a kick."
"Even now, I notice that doctors do not inquire down the TB angle, even if the person asks specifically about it. I have come across people who are not [correctly] diagnosed with TB, [even] in a chest hospital or a general hospital. However, the specialist HIV doctors will diagnose TB in the same people. Diagnosing TB is a problem for people who are living with HIV. The Mantoux test may not provide clear evidence. The traditional means of diagnosing TB - sputum smear examination and chest X-rays - are also not conclusive in people with HIV."
HDN: Who comes to Michaels Care Home?
"More than half of the people who stay in Michael's Care Home are not from Delhi but from the Northern States of India, such as Haryana, Punjab, Rajastan, Bihar, etc. More than 50% of the people we treated in our residential care during last four years were treated for TB."
HDN: Did they know they had TB before they came?
"No. Most are diagnosed with TB [only after] they come here. People don't suspect TB in their homes. Testing for TB is routine in Michael's Care Home."
HDN: What do you say about TB when you talk with others in DNP+?
"We don't talk about TB much. We know that it is treatable and curable. We know that it is important to complete your full course of medication. We also know that TB is an important opportunistic infection, and we see a lot of people cured of TB."
HDN: What makes you think about TB?
"Every time I feel a pain in my chest, I remember that I did not complete my TB treatment. I have had myself tested for TB another five or six times ever since I found that I was HIV positive. I feel very strongly that I am at risk of TB infection and that it is very dangerous that I did not complete my full course of medication."
HDN: In the past you said that DOTS is "HIV unfriendly". What do you mean by that?
"Firstly, I must say that DOTS is our first option in treating TB and it is a successful treatment programme. Every year, our DOTS centre reports a cure rate of over 85%. However, DOTS is not "friendly" towards people who are living with HIV. There are three main reasons:
.Firstly, the medicines are pre-packaged and so the doses are not flexible. People living with HIV need flexibility in their dosing if they have hepatitis, or are taking other drugs, which are toxic to their liver;
. Secondly, access to DOTS depends upon a positive sputum test, and TB is less likely to show in the sputum of people who are living with HIV;
. Thirdly, access to DOTS depends upon having a residential address local to the DOTS centre. Many people with HIV do not have a residential address close to the DOTS centre which might diagnose and treat them."
HDN: So how do you provide a full course of treatment to people who are diagnosed in Michael's Care Home but do not live in Delhi?
"We usually try to connect the families, or referring agencies of the people who need treatment, to DOTS centres close to them. Some people are not eligible for DOTS. They are usually people who don’t have a residential address at all. In this situation we provide the medication, and support the person's carers to provide the follow up to ensure that the full course of medication is taken."
HDN: Did you receive DOTS?
"No. I don't think DOTS was available in Churachandpur nine years ago. If it was, I was not aware of it. My mother bought my medication [from] the market. Once on medication, I recovered very quickly. Within four days I was feeling much better. My mother gave me a good diet. However, after four months she told me that we had to make a choice. She said that she could afford either the TB medication, or "Number 4" [i.e. heroin], but she could not afford to buy both of them. I chose "Number 4" and stopped my TB treatment."
HDN: Did you know your HIV status when you were diagnosed with TB?
"No. I was diagnosed with TB two or three years earlier than I was diagnosed with HIV."
HDN: How do you think you would have responded to your doctor if he had offered you an HIV test when you were informed you had TB?
"It is hard to say now, but I remember trusting this doctor, and probably would have happily followed his advice. When I met him, I knew that he would cure me. He gave me a very thorough physical check-up and told me that he was sure that I have pulmonary TB. The laboratory tests confirmed his suspicion. I found the doctor’s confidence very therapeutic."
HDN: What do you remember about going for your HIV test?
"When I gave my blood for my first HIV test, I was sure that I would be HIV positive. I thought to myself; If what they write in the books about HIV is true, then I definitely have HIV. Despite my preparation for the result, I was very shocked to receive my positive result. I am still shocked. I was not offered post-test counselling at any of the centres where I have been tested."
HDN: What are your sources of information?
"I was reading a clinical manual from the STOP TB Partnership. It gave a very good description of the problems I had seen in diagnosing TB in people who are living with HIV. So I asked the doctor to explain it in a class for our staff. The doctor was able to explain some of it, but we are not satisfied with the answers to some of our questions."
Loon's own experience of living with HIV and TB, and helping others with both of these infections makes his perspective and response to an urgent situation very personal and practical. He highlights that international progress in diagnostics and treatment of TB is not keeping pace with the progress of HIV and TB epidemics, yet that policy makers and health care providers are not maximising the potential of what technology and information is currently available to them.
HDN Key Correspondent Team
Email: correspondents@hdnet.org
(Source, Stop-TB eForum May 2005)
HDN: Can you tell us something of your personal experience with tuberculosis (TB) in India?
"A friend of mine, who also had been diagnosed with TB, recommended a private practitioner who diagnosed my TB nine years ago. Before meeting this doctor in Imphal, the capital of my state, I had seen four other doctors in my home town. None of them suspected that I might have been sick from TB. All they gave me was bottles of cough syrup. I was very sick - virtually a walking skeleton. I think my weight had gone down below 40kg. Everybody thought that I would die soon. The pain in my chest was unbearable, and even heroin would not give me a kick."
"Even now, I notice that doctors do not inquire down the TB angle, even if the person asks specifically about it. I have come across people who are not [correctly] diagnosed with TB, [even] in a chest hospital or a general hospital. However, the specialist HIV doctors will diagnose TB in the same people. Diagnosing TB is a problem for people who are living with HIV. The Mantoux test may not provide clear evidence. The traditional means of diagnosing TB - sputum smear examination and chest X-rays - are also not conclusive in people with HIV."
HDN: Who comes to Michaels Care Home?
"More than half of the people who stay in Michael's Care Home are not from Delhi but from the Northern States of India, such as Haryana, Punjab, Rajastan, Bihar, etc. More than 50% of the people we treated in our residential care during last four years were treated for TB."
HDN: Did they know they had TB before they came?
"No. Most are diagnosed with TB [only after] they come here. People don't suspect TB in their homes. Testing for TB is routine in Michael's Care Home."
HDN: What do you say about TB when you talk with others in DNP+?
"We don't talk about TB much. We know that it is treatable and curable. We know that it is important to complete your full course of medication. We also know that TB is an important opportunistic infection, and we see a lot of people cured of TB."
HDN: What makes you think about TB?
"Every time I feel a pain in my chest, I remember that I did not complete my TB treatment. I have had myself tested for TB another five or six times ever since I found that I was HIV positive. I feel very strongly that I am at risk of TB infection and that it is very dangerous that I did not complete my full course of medication."
HDN: In the past you said that DOTS is "HIV unfriendly". What do you mean by that?
"Firstly, I must say that DOTS is our first option in treating TB and it is a successful treatment programme. Every year, our DOTS centre reports a cure rate of over 85%. However, DOTS is not "friendly" towards people who are living with HIV. There are three main reasons:
.Firstly, the medicines are pre-packaged and so the doses are not flexible. People living with HIV need flexibility in their dosing if they have hepatitis, or are taking other drugs, which are toxic to their liver;
. Secondly, access to DOTS depends upon a positive sputum test, and TB is less likely to show in the sputum of people who are living with HIV;
. Thirdly, access to DOTS depends upon having a residential address local to the DOTS centre. Many people with HIV do not have a residential address close to the DOTS centre which might diagnose and treat them."
HDN: So how do you provide a full course of treatment to people who are diagnosed in Michael's Care Home but do not live in Delhi?
"We usually try to connect the families, or referring agencies of the people who need treatment, to DOTS centres close to them. Some people are not eligible for DOTS. They are usually people who don’t have a residential address at all. In this situation we provide the medication, and support the person's carers to provide the follow up to ensure that the full course of medication is taken."
HDN: Did you receive DOTS?
"No. I don't think DOTS was available in Churachandpur nine years ago. If it was, I was not aware of it. My mother bought my medication [from] the market. Once on medication, I recovered very quickly. Within four days I was feeling much better. My mother gave me a good diet. However, after four months she told me that we had to make a choice. She said that she could afford either the TB medication, or "Number 4" [i.e. heroin], but she could not afford to buy both of them. I chose "Number 4" and stopped my TB treatment."
HDN: Did you know your HIV status when you were diagnosed with TB?
"No. I was diagnosed with TB two or three years earlier than I was diagnosed with HIV."
HDN: How do you think you would have responded to your doctor if he had offered you an HIV test when you were informed you had TB?
"It is hard to say now, but I remember trusting this doctor, and probably would have happily followed his advice. When I met him, I knew that he would cure me. He gave me a very thorough physical check-up and told me that he was sure that I have pulmonary TB. The laboratory tests confirmed his suspicion. I found the doctor’s confidence very therapeutic."
HDN: What do you remember about going for your HIV test?
"When I gave my blood for my first HIV test, I was sure that I would be HIV positive. I thought to myself; If what they write in the books about HIV is true, then I definitely have HIV. Despite my preparation for the result, I was very shocked to receive my positive result. I am still shocked. I was not offered post-test counselling at any of the centres where I have been tested."
HDN: What are your sources of information?
"I was reading a clinical manual from the STOP TB Partnership. It gave a very good description of the problems I had seen in diagnosing TB in people who are living with HIV. So I asked the doctor to explain it in a class for our staff. The doctor was able to explain some of it, but we are not satisfied with the answers to some of our questions."
Loon's own experience of living with HIV and TB, and helping others with both of these infections makes his perspective and response to an urgent situation very personal and practical. He highlights that international progress in diagnostics and treatment of TB is not keeping pace with the progress of HIV and TB epidemics, yet that policy makers and health care providers are not maximising the potential of what technology and information is currently available to them.
HDN Key Correspondent Team
Email: correspondents@hdnet.org
(Source, Stop-TB eForum May 2005)
posted by AIDS-Care-Watch at 11:21 pm
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