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)

South Africa: Clinic Tackles Urgent Need for Aids/TB Treatment

DURBAN--Tuberculosis (TB) is the most frequent opportunistic infection and the leading cause of death for HIV-positive people. The scale of the problem is staggering, with some 12 million people co-infected with HIV and TB, two-thirds of whom live in sub-Saharan Africa.

A recently-opened HIV/AIDS and TB research clinic in Durban, South Africa, is one of the few clinics in KwaZulu Natal province which provides combined TB and antiretroviral (ARV) treatment for TB patients co-infected with the virus.

KwaZulu Natal has the most tuberculosis cases in the country and has been hard-hit by the HIV/AIDS pandemic.

The clinic, which is run by the University of KwaZulu-Natal Centre for the AIDS Programme of Research in South Africa (CAPRISA) and the local municipality, will also conduct research on HIV/AIDS and TB.

Researchers became aware of the urgent need for combined HIV/AIDS and TB treatment when data from the Prince Cyril Zulu Communicable Disease Clinic (CDC) - Durban's busiest TB treatment centre - showed that 76 percent of its TB patients were HIV-positive. The CDC treats about 18,000 patients per month.

According to director of CAPRISA's AIDS Treatment Programme Dr Kogie Naidoo, treating co-infected patients was even more difficult, as patients' immune functions and CD4-counts decreased more rapidly, opportunistic infections became more complicated and patients could die quicker, she said.

In addition, HIV-positive TB patients often experienced multiple side effects due to the toxicity of ARVs and TB drugs, and the high pill-intake necessary to treat the diseases.

"TB has fuelled the AIDS pandemic," Naidoo told PlusNews.

The newly opened HIV/TB clinic is located next to CDC at Durban's Warwick Triangle, which is one of the main bus and train hubs in and out of the city, making it easily accessible to people travelling from townships and rural areas.

As an outpatient facility, the clinic provides supervised treatment, post-test counselling, education and peer support. Patients also receive drug adherence training and support, contraceptive advice and contraceptives as well as treatment of AIDS-related infections. The clinic also helps patients to access social services, such as disability grants.

Although the centre was officially opened last month, the CAPRISA staff has been screening 850 HIV-positive TB patients since September 2004. "We started the screening process before the building was fully renovated because the need for a TB/HIV clinic was so great," explained Naidoo.

CAPRISA applies the same entry criteria to the ARV rollout as the government, and patients' CD4-counts need to be lower than 200. So far, the clinic has enrolled 150 persons on combined ARV and TB treatment, and a further 200 patients are currently undergoing counselling and other treatment preparation procedures.

The clinic's ARV treatment services are sponsored by the US government's President's Emergency Programme Fund for AIDS Relief (PEPFAR), while the ARVs are sponsored by the Global Fund for AIDS, TB and Malaria through the provincial health department.

Professor Salim Abdool Karim, head of CAPRISA, said there was "an urgent need for research into the best ways to provide AIDS treatment", adding that it was the clinic's aim to "seek new ways of treating patients with the dual infections of TB and HIV."

The research team will be supported by the University of KwaZulu-Natal, which has established a satellite computer link with the CAPRISA TB clinic to give clinic staff and researchers access to the latest research information on HIV/AIDS.

"We want to find the optimal point in time to start ARV treatment when a patient is TB co-infected and on TB treatment," added Naidoo. Researchers are still uncertain as to whether the best time to start ARV treatment for TB-infected patients is at the beginning, the peak or the end of the TB treatment phase, she further explained.

[This report does not necessarily reflect the views of the United Nations ]

Source: UN Integrated Regional Information Networks, May 2, 2005

TB overwhelming Africa

by Anso Thom, Health E-News
April 5, 2005

Health leaders meeting in Addis Ababa have released a "Road Map" to scale up the battle against a spiraling tuberculosis epidemic.

It’s an ancient disease and completely curable. Yet, more than 2,4-m Africans are infected with tuberculosis and at least 540 000 die annually. Africa has become the epicenter of the TB epidemic and health leaders meeting in Addis Ababa this week have realised this is where they have put resources if they want to halt the disease globally.

African and international health and development leaders met for two days in Ethiopia, releasing a detailed “Road Map” to halt the continent’s spiraling TB epidemic, which in combination with HIV is overwhelming health services in the region.

The Road Map in essence calls for the establishment of an African Stop TB Partnership to build greater political commitment by governments to fight the disease, and for the African Union and NEPAD to mainstream TB control into the region’s health and development agenda.

The Road Map estimates that U$1,1-billion (Over R6-billion) will be needed in 2006 and 2007 to strengthen TB programmes and scale up measures to address HIV-associated TB in Africa.

Dr Paul Nunn, co-ordinator of the World Health Organisation team in the Stop TB Department defined the four main pillars of the Road Map as:

Huge political commitment as Africa becomes the global battleground for TB. This would need to happen if there was any hope of reaching the Millennium Development Goals.

A concerted move to strengthen health systems, already buckling under the increasing load.

A strengthening of the DOTS system that is well equipped to deal with the epidemic.

Specific measures in Africa to address the co-infection of TB and HIV or AIDS.

According to the WHO, TB incidence rates have tripled since 1990 in 21 African countries with high levels of HIV. Of the 15 countries in the world with the highest TB rates today, 13 are in Africa.

Over the last decade, DOTS programmes have diagnosed and treated millions of TB patients in Africa, and the results are remarkable in some countries, according to a media release by the Stop TB Partnership.

Ethiopia, which has implemented the DOTS programme, has an annual Gross Domestic Product per capita of U$100 (R600), yet it has TB cure rates comparable with countries that are 30 times richer.

However, performance of the region’s TB programmes is limited by the impact of HIV and by persistent health system constraints, especially the lack of sufficient trained staff. In sub-Saharan Africa there is one health worker per 1 000 population, compared to the global average of four.

More about the Stop-TB Partnership at http://www.stoptb.org/

Source: Health E-News Service, http://www.health-e.org.za/