Cover Story

Life After HIV

Hana Shams Ahmed

35-year-old Mahbub (not his real name) was diagnosed HIV positive while he was working in the Middle East and 17 years on he looks just as healthy as the next person. Many people might find that hard to comprehend, as the overriding notion is that a person diagnosed HIV positive is virtually sitting on his/her deathbed. Mahbub is perhaps the perfect example of the contrary.

“I was devastated when I first learned that I was HIV positive,” says Mahbub. "At that

Habiba Akter, founded Ashar Alo Society when she found out that many people were dying from AIDS simply because of lack of information

time there was no information on this issue,” he continues, “I faced an immense amount of discrimination and stigmatisation from my family and from the society where I lived. But after I started getting counselled I came to realise that it wasn't the end and that a person can lead a very normal life even being HIV positive.”

“I think it's very important for people not to lose hope and get educated. A PLHA (Person Living with HIV/AIDS) is just like any other person and has much to give to society and society should give him/her the due respect,” says Mahbub, “When I was first diagnosed the news spread very fast and I had to face the consequences one after the other. Since I still haven't died my relatives think that I was diagnosed wrongly. I prefer to keep it that way, and not face any more problems in society.”

The secret to Mahbub's good health is simply a balanced routine. “I follow a balanced nutritional diet, do some light exercises regularly and make sure I get proper sleep,” he says. Mahbub does not have any other complications. In fact the only medicine he's taking constitutes regular vitamin supplements.

“It's very important to go to an HIV/AIDS expert doctor from the very beginning. Any other doctor will give the wrong medication and will only make matters worse,” says Mahbub, “Counselling is most important. People who do regular follow ups at our organisation are doing quite well here.

HIV/AIDS in Bangladesh is still a sparsely talked about subject thanks to overriding superstitions and myths that shroud it. Although the official figure for the number of People Living with HIV/AIDS (PLHAs) is 658 (government figure as of 2005), the projected number for PLHAs all over the country is more than 13,000. And with more and more people travelling to countries in the Middle East and South Asia, where most people bring the infection from, the risk increases manifold. While the government is spending a huge amount of money on raising awareness through different media, they are spending little in the way of care and support for the patients. What the government forgets is that PLHAs are a source of infection to other people and left neglected, awareness-raising programmes will only do half the work.

Ashar Alo Society (AAS) has been working for caring and supporting, counselling and empowering PLHAs since its formation in 2000. It has branches in Dhaka, Chittagong, Sylhet, Rajshahi, Jessore and Khulna and since its inception up until now 326 PLHAs have benefited from its programmes.

The organisation provides peer counselling, nutritional counselling, and family counselling for PLHAs. It also equips them with life-saving skills training so that they can stay well and live long by avoiding getting any infections. Monthly meetings are held at the premises of the society where PLHAs share their problems and AAS informs them about their plans and activities. The organisation also arranges vocational training for poor PLHAs who are unable to find work and provides monetary help to the very poor. There are two doctors available round the clock for treating outpatients, which also includes monthly check-ups of members and HIV testing. The organisation also provides life-saving drugs from pain-relieving pills to ARV (Anti Recto Viral) for a certain number of patients. All these services are provided free of cost as most of the HIV positive patients are poor and jobless.

The organisation also arranges community-based awareness raising programmes and advocacy meetings with doctors, the media and community people. The programmes are sponsored by FHI (Family Health International), ActionAid Bangladesh, UNICEF and Dutch Bangla Bank Ltd. Beximco Pharmaceuticals also supplies ARV medicines at a low price.

Habiba Akter, the Executive Director of AAS founded the organisation with Mohammad Ali, both of whom used to work as counsellors at CCDB (Christian Commission for Development in Bangladesh). “While we were working there we realised at one point that AIDS patients were facing a lot of problems from their family and society,” says Akter, “A lot of people were dying without any treatment. Many times it came from the fact that people with this disease have a tendency to hide the fact.” Akter points out that hiding the disease only makes matters worse because a PLHA without the right information is more vulnerable to getting afflicted with other diseases and thus dying earlier without treatment. Counselling and training helps a PLHA to live a long, healthy life.

“I visited a lot of countries and found out about the condition in their countries and thought that we too should have an organisation for HIV positive persons in our country,” says Akter. The organisation started work with five staff members in Dhaka and a membership of ten to a staff of 19 serving almost half of the country's 658 identified PLHAs and more than 750 family members all over Bangladesh.

Akter talks about her painful personal journey that brought her to this field of work. “I actually started working in this field ever since I got to know that my husband was HIV positive,” she says. Akter's husband used to work in Saudi Arabia where he contracted the disease. After coming back to Dhaka he fell extremely ill but the cause of his illness remained unidentified for a long time. He died only 15 days after finding out what was wrong with him when Akter was only 25 years old. Most of AAS's staff members are in fact HIV positive.

A PLHA who is now working as a programme coordinator at Ashar Alo Society

The message AAS primarily wants to give out is that becoming HIV positive does not mean the end of the world. In fact, until a person has full blown AIDS he/she can lead a long and normal life. Education and a disciplined lifestyle can easily ensure that. When the HIV virus enters the body, the person is said to be HIV positive. This virus slowly breaks down the immune system. Once the immune system is broken down the person easily catches other illnesses. During season changes when normal people get colds and fever, a PLHA becomes more prone to these. They are also very vulnerable to diarrhoea, TB and herpes. These other diseases cause infections in the person's body and sores start appearing in different parts of the body. These things start happening once or twice a year and the frequency starts increasing. The CD4 T cells (known as Helper T cells which are the "middlemen" of the adaptive immune system) in the person's body starts going down. A healthy person has about 1000 to 1400 T cells; a child has more. Once an AIDS patient's T cell goes below 200, the frequency of infections start getting higher.

At this point the patient has to start taking Anti Recto Viral (ARV) therapy. The ARV gives the immune system a boost by suppressing the virus. The HIV virus has a certain growth cycle, the ARVs intervene and try to control and suppress this growth cycle. But it has to be taken for life. BEXIMCO Pharmaceuticals was the only company producing this medicine and SQUARE Pharmaceuticals has only recently launched it on the market. But the medicines are very expensive to produce. It costs about Tk 3700 per month. A person unfortunately slowly starts growing a resistance to this medicine at some point. Then he/she has to start taking the second line of ARV, which is not available in our country. It costs Tk 15000 to 20000 per month in India. Dutch Bangla Bank is sponsoring the ARV medicines for 33 people and ActionAid Bangladesh is providing it for a further 10 people under AAS.

ARV medicines are too expensive for an unemployed PLHA to afford

Akter is very disappointed with the government's slow response to providing care and support for PLHAs. “The government is currently spending a lot of money on awareness raising but since care and support is so expensive and the number of PLHAs are not that high [compared to other countries], they are not giving priority to it,” says Akter, “HIV positive patients have to face a lot of problems that other patients don't have to. They are not so easily admitted to any public hospital. The only facilities available on the seventh floor of the Infectious Diseases Hospital in Mohakhali is just a farce. Patients in whatever condition have to climb up all by themselves and then are not even treated properly.”

AIDS patients are even discriminated against by the doctors and nurses there. The nurses there allegedly refuse to serve PLHAs and the patients are forced either to inject themselves or take a nurse along with them. Many PLHAs refuse to get treated simply because of the hate and discrimination they have to face at these public hospitals and private treatment is too expensive. “Of course the situation has changed much since the first identified HIV positive patients in the country were locked up in jail in 1988. But still many families refuse to support their loved ones especially at the last stages they refuse to stay by their side,” says Akter. Many people in the country are still under the impression that the AIDS virus can be spread from one person to another by sharing cups and plates and shaking hands.

Sex workers and victims of trafficking are at great risk of contracting HIV/AIDS

In his own words 37-year-old Parvez (not his real name) was a poor man's son who was full of hopes and dreams about going abroad. After getting visa to go to Saudi in 2004, he found out he was HIV positive when he went for a regular medical check up in a hospital in Banani. Although he was extremely depressed things changed for him when he came to Ashar Alo Society after being referred by someone. “After I came here and talked to everyone, whatever fear and helplessness I had went away immediately,” says Parvez, “I feel really happy after coming here. I seemed to have found a new lease in life.”

Before coming to AAS everyone had warned him that he would die very soon. “I used to think that too,” he says, “But I have come out of that now. All my relatives and neighbours know about my condition and they don't treat me the way they used to when they first found out. Now they really care about me and show me their support.”

Unfortunately, Parvez who is one of the Programme Co-ordinator at AAS, points out that there is not enough money to treat everyone. He hopes that the government will show more empathy towards PLHAs. Parvez has a wife and three children, all of whom are free of HIV.

Injecting Drug Users (IDUs) are a big source of internal transmission of HIV/AIDS

Professor Dr. Mohammad Nazrul Islam, the chairperson of the Department of Virology at Bangabandhu Sheikh Mujibur Medical University (BSMMU), who has been working with PLHAs in Bangladesh from the very beginning, feels strongly that it's high time the government gives more attention towards support and care for the increasing number PLHAs and their families if it wants to make their programmes successful. “An infected person is a source of infection. We need to ensure that the infection does not spread from this source, in order to stop the internal transmission. In the internal transmission two things must be ensured; firstly, the person who is at risk of getting infected [partner of PLHA] should be educated so that he/she practices safe behaviour and secondly the PLHA should be educated on how to take care of himself/herself. But these people unfortunately are not getting any treatment, proper food, or a place to stay. We are spending hundreds of thousands of taka on awareness-raising through print and electronic media, seminars and symposiums but we are failing to take care of the persons affected. These people are getting desperate. Why should they care about us if we don't care about them.”

Professor Nazrul Islam believes that it's the government's responsibility to take care of the widows and orphans of people who die from AIDS

Islam thinks that it is a shame that while a large chunk of the money in the national budget includes remittances from abroad sent by emigrant workers who are at high risk of contracting HIV/AIDS, there are no programmes for awareness creation among these people. “These people are getting infected simply because of their ignorance and when they come back to our country and die without any treatment, the government should take the responsibility of their widows and children!” he exclaims. In fact Islam believes that it is the moral responsibility of every citizen of the country to take care of the widows and orphans of the PLHAs.

Injecting Drug Users (IDUs), MSMs (Men who have Sex with Men), and emigrant workers are the most vulnerable group to acquire HIV/AIDS but currently about 85 to 90% of the HIV positive patients are emigrant workers returning from abroad. According to Islam the government has a lot of fund, but the problem is that the funds are not allocated in the right places. The big risk factor is that HIV prevalence is very high in the neighbouring countries, and a lot depends on the AIDS programmes they have in those countries. For example although Thailand is a high risk country, they have a very strong prevention and control programme as a result of which only one person (official estimates say) has so far been infected from that country. Programmes in India, Malaysia and countries in the Middle East are very weak and every year emigrant workers come back HIV positive from these countries. The strength of a programme depends on two things - one is the percentage of consistent and regular condom use at brothels where these programmes are undertaken and the other is how fast and effectively STDs are treated among the sex workers. In Thailand condom use at brothels is 100%. In India it varies in different states. In Bangladesh it is quite low.

Islam specifies another potential risk area that the government is overlooking. “There is a population living in the border area who thrive on smuggling,” he points out, “The activities of these smugglers is very difficult for people living in the city to understand. The female smugglers bribe the border police by selling their bodies. In fact they undergo physical contact with a lot of people in the process and then they come home and infect their husbands and they spread it to others. If this continues the infection in the area might reach epidemic proportions and we will not even know about it until a lot later.” Trafficked women also are at great risk of spreading the disease as most of them end up in brothels in India where prevention and controls programmes are not very well managed in all the states.

“Care and support of PLHAs does not only mean providing ARV medicines,” says Islam, “They need psychological, nutritional and laboratory support. There needs to be a full laboratory set up to assess who needs ARV therapy and at what rate with regular follow ups. There should also be palliative (pain relieving) care for AIDS patients towards the end of their lives. It should be a very comprehensive plan. Unfortunately there has not been any development in this sector in the last 20 years. We are still stuck with awareness-raising.”

Patients allege that nurses at the Infectious Diseases Hospital refuse to treat then, not even stretchers are spared for the very ill

Even that has not been successful. Islam points out that still now at many hospitals nurses and ward boys avoid going near the AIDS patients. Many patients refuse to get admitted to hospitals because of the harassment they face from all sides journalists come and start taking photographs and ask for interviews; patients from the nearby beds start objecting. “A patient does not get the peaceful sleep he/she needs so badly,” adds Islam and are generally made into objects of curiosity.

Ashar Alo Society, 8/1 Aurangazeb Road (2nd floor) Block A, Mohammadpur, Dhaka 1207, Ph: 9133968, 8159268

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