A quarter of a century after HIV/AIDS first emerged, the disease continues to wreak havoc in many parts of the world. Initially, one of the hardest hit countries was Thailand. In the mid- and late 1980’s, the virus spread rapidly among drug users and prostitutes. By 1991, the country’s prime minister announced that AIDS prevention and control would become a national priority. Thailand soon became one of the world’s first success stories in the battle against the disease, reducing the number of transmissions from 140,000 in 1991 to 23,000 in 2003. Nonetheless, one in every 100 Thais is infected, and AIDS is still the country’s leading cause of death. The first and largest free AIDS hospice in the Thai capital, Bangkok, is the Mercy Centre. It was founded by a Catholic priest in Klong Toey, the biggest slum community in Bangkok .
Original broadcast: June 13, 2006
Initially, people in the slum were unfamiliar and even afraid of HIV/AIDS, explained to me Usanee Janngeon, one of the centre’s health managers, who took me on a tour of the hospice.
So, welcome to the Mercy Centre. This is our home. As you can see, we have beautiful gardens here. As far as I know, we are the only AIDS hospice which is actually in the middle of the slum. So that’s why we told the community we are here to help. Please give us permission to be here. We want to help. And as you can see, 7 years ago that we weren’t really welcomed, but after 7 years ago to this day, we have actually been accepted by the community. The reason that I say that we have been accepted is our patients who come into our hospice can walk out in the community, can buy food, can do whatever they want as long as they don’t make trouble, the community will accept them. 7 years ago our AIDS people weren’t allowed to walk in the community. That is why I feel that the outreach programme that we have been doing has actually reached the community. The community do understand. I’m not saying there’s no discrimination, far from that. But at least they have shown acceptance of HIV/AIDS patients in the community.
I discovered just how great the resistance had been when I spoke to Pai, a 72-year-old grandmother. Her son and her daughter-in-law both died of AIDS, leaving behind a 2-year-old boy who also turned out to be HIV positive. Kom Kiau is now 15. Initially Pai was reluctant to take care of him.
She said she was afraid, you know. At that time, she didn’t know whether AIDS was infected easily or not and how it was infected. But he is her grandson and only grandson, and so she said, she didn’t mind looking after him and even if she was to get the HIV infection from him, it wouldn’t matter to her. EB: Did you try to get information about the disease from elsewhere? Actually one of the NGOs gave her information and the hospital gave her information on how to look after someone who have AIDS and that is not infected easily. She told all of her children, her own children, that if you are scared of HIV/AIDS, then leave. Don’t stay with me. I will keep my grandson, whatever happens. A very tough lady. I tell you grandmothers are the heroes in the community, and it’s very true. EB: What do you expect for your grandson? Do you expect him to finish school and then go on to do what? What she does in the morning is she sells porridge, rice porridge to our kindergarten, to our children who come to school in the morning. Now, with Kom Kiau, she wishes he would finish school. She wishes that he would have good jobs, but Kom Kiau does not enjoy going to school. He prefers to be at home. So for her, she is very much scared of him not getting a job when she dies, not having something when she dies. So apart from working with people like us, she’s also training him, when he doesn’t want to go to school, training him to sell the rice porridge, so that when she does or when she is not able to sell, he can take over from her. EB: Is there anything that Mercy can do to help in this situation? We really encourage him to come live at the Mercy Centre. Reason: because of treatment and getting medication on time. And all of this is important. As you can see, it’s hard at times for her to give him medication on time. What we can do – and we’ve already talked to her – is that when she’s at the stage of not being able to look after or when Kom Kiau is not well, then he can always come into the Mercy Centre. So there’s always a place for him here, and she knows it and he knows it but it’s just that they both love each other so much that they would prefer to carry on helping each other and supporting each other.
One of the ways the Mercy Centre has tried to inform the slum-dwellers about HIV/AIDS is through the pre-schools it runs for poor children. The Mercy Centre runs over 30 kindergartens, providing education to 45-hundred children.
All of the kindergarten, the family knows what we do. So some of those kindergarten do refer the patients to us whom are members of the community. So our outreach team goes into the school. We do it twice a year. We meet with the parents, and sometimes the parents, they are the ones who come and tell us, ‘I have a neighbour, and I think my neighbour, her son, her daughter, her husband, her wife, is HIV positive, can you do anything to help?’ You know, we cannot go into any home unless they give us permission. So we use the school as much as we can as a coordinator because if anybody in the community has problems, they usually go to the teacher. So we educate our teachers because they are our great asset and the people who are living in the community can come to the teacher and the teacher can say, ‘oh I know a perfect person, and then it’s then passed on to us.’
The Mercy Centre hospice used to take care of over 250 patients a year and served as a shelter for people in the final stages of the disease. But the advent of anti-retroviral drugs has led to a major drop in the number of patients.
We call it temporary hospice. The reason for temporary is most people come and then they do gradually go home because of the medication, the anti-retroviral drugs, the attention given by the nurses, by the staff and family involvement. So this is really just a temporary place for us. It’s also to give us time to bridge between the family and the patient. Family needs to understand that AIDS is not just an issue of patient working by themselves, but it’s the whole community who have to help. In this case, the community meaning the Mercy staff, the hospital, the family and the patient. We work together as a team. Without any of us then it doesn’t work. So family needs to understand and they do, but it takes a while for them to understand that they need to be involved. So the patients are referred to us from the hospital. The patients are referred to us from other NGOs. The patients are referred to us from homes but whatever happened before a patient comes into our hospice, they have to go through the hospital. They have to have medication from the hospital, then they can come to us. When they come to us, our nurse then takes charge of looking after the medical side. Our carer looks after the health side, meaning make sure that they have food, make sure that they are clean, make sure that the family comes and so we work together as a team. We have 25 beds of patients here. We have a lower intake of patients than we used to and the reason for this is we have a very, very strong home-based care team. So before patient comes into our hospice, our home care team visits the patients at home. By doing that, we then realise that it’s not necessary for all of the patients to be or to come into our hospice. All the family needs is education, assurance that if a person has AIDS, you can live together. Three years ago we were taking in at least 200 patients per year. Now we’re taking in less than 100 patients per year, but we do have over 300 members who are HIV positive living at home. We don’t visit all 300 every month. Reason because some of them are better. Some of them are stronger. Some of them are working. Some of them are getting full support from the family, so we don’t need to visit them. All we do is give them a call, ask if everything is OK, fine. So we only visit those who have family problems, who have community problems, who have problems in getting access to treatment or to medication. That we help with. We have one of our patients waiting to talk to you…
EB: What is your name? Her name is Tuk Tar. EB: And how old are you? She’s 48 years old. EB: How long has she had HIV? She doesn’t know when she got the HIV infection, but she was told last year that she was infected with HIV. EB: Do you think you got it from your husband? She’s definitely sure that she got it from her husband. EB: Is your husband still alive? She doesn’t know whether he’s still alive because they’ve separated and the last she knew was that he have a new wife. So she doesn’t know what is happening to him. EB: So who comes to visit you from your family? This lady here is a good friend of hers who found her, and she was the one who got in touch with us. So she doesn’t really have any family at all, except this friend of hers called Gail, who she feels is everything to her, more than a family.
EB: Can you tell me how you got to know her? I first met Janta in Nan Hospital which is in northern Thailand because I used to live in Nan and had friends at the hospital. The nurses took me to see her and they asked me do you know anywhere that we can send her because we can’t contact any family, and we can’t keep her in the hospital. And I had been living in Bangkok for several months at that point near here and I knew of Mercy, and I said well I can go down and talk to Mercy and see if they are happy to take her in here. EB: And you still regularly come and visit her. Yeah, I come about twice a week, sometimes more. My house is only about 10 minutes’ walk away from here, and I do some volunteer work with another community centre in this area. There’s lots of different foundations here and I do some volunteer work with a different one. But because I’m in the area, I come and see her when I can. EB: Why is it important for you to keep up this link with her? Well, we’ve become friends now. And I think, particularly because I was involved in bringing her here to Bangkok, where she has nobody, she knows nobody, that I became something like family for her here. And I think it’s important because we all need friends, we all need someone who takes an interest in us, and particularly for people whose health is at risk like this, the social contact can be the difference between just giving up and being willing to fight on and go on. So I think it’s important and I enjoy coming here. I have a great time when I come and visit Janta. She’s great.
She said, without her there’s nothing left for Tuk Tar in this world because she’s the only family that she has, and when she was ill it was Gail who helped her. So she’s very, very grateful for this lady. But she does understand if she’s not here in Bangkok and cannot come to meet with her. EB: But what are the long-term prospects for her because she can’t stay here forever, so what will happen? Usually with the Mercy Centre, with our hospice, we don’t really keep patients for too long, unless we can’t bridge between patients and family. In Tuk Tar’s case, and many cases like her who have no family at all, there is another NGO that we work with. So there’s an exchange of patients, like we will take in patients who is very, very sick and you have no nurses or carers to look after. At the same time, if we have a patient who is strong and who can look after themselves, then we will refer our patients there. So we have a very good relationship with other NGOs. Actually, you know, before coming in, she was a very, very naughty girl. She refused to do everything that we tell her to do. But now she has faith in us and she knows that we are really helping her. So she’s really, every time, she sees me, oh thank you, thank you. Every time she sees the staff, oh thank you, thank you. She’s very appreciative of what she’s getting, the help. / EB: What did she say? No, she just want to say thank you for giving her a place to stay, for food, for taking her to the hospital, for having a nice bed to lie on.
Usanee Janngeon is convinced that the Mercy Centre is setting an example for the rest of Thailand.
I know that the government wants to set up this sort of project as well and for whatever reason, it doesn’t work out. But at least the government knows what we are doing, and we are getting financial aid from the minister of public health, the AIDS division of Thailand. Not as much as we would wish for them to help, but we do understand because there are lots of NGOs that are working on the AIDS issue. But at least the government knows what we are doing. At least the government knows that we exist and that they are ready to support us, however much they can.