Joy - A Story Of A Simple Country Girl

[Mobi]

Joy’s father is about 10 years younger than me, but looks about 15 years older. He is a worn out, wrinkled specimen of a man who has spent his entire life in back breaking labour, and is now incapable of work. The villagers take pity on him, and any time there is a piss up, he gets ‘tanked up’ very early on and usually passes out on the ground. I once asked to my wife why doesn’t his family and friends take him in hand and try to stop him drinking. Her response was that he has lived such a hard life; let him enjoy himself a little before he passes on.

Joy’s mother (my wife’s aunt) was a nice friendly, well rounded lady in her mid fifties – until she got a brain tumour. Within weeks, she was a skeletal, barely conscious, and spent her time prostrated on a mat – unable to move or feed herself. The last time I saw her, she was just starting to make a partial recovery, after a year of being in a semi coma.

Joy is in her early thirties. She has been alone and penniless since her husband left her some years ago. She spends her days living a frugal existence in the family hut, and when I visit the village, she always comes over to the wife’s family house and tries to join the festivities, and help with the kids. She never smiles – except on the few occasions when we take her with us when we go on days out with the kids. I’ll never forget one day we all went to some waterfalls near Kow Chackan, and she enjoyed herself so much - Swimming and splashing in the water, and laughing with the kids. I have some lovely pictures of her and the kids from that day.

Two weeks ago I went to my wife’s village, and Joy was sitting on the porch looking even more sad than usual. It soon became clear that Joy was not well. My wife took her to the local doctor where she was given an ‘injection.’ I enquired what was wrong, but just received a shrug of the shoulders in reply. She really looked very ill, but struggled to make the best of it and to join in the conversations with the rest of the family.

One week ago my wife told me that Joy had collapsed and the wife’s brother had taken her to the hospital in Sa Kaeo. The doctors told her she was in an advance stage of AIDs and there was no hope for her. My wife assured me that Joy had never ‘played around’ after her husband left, and I believe her. She is a plain, simple woman, and I know that she never went anywhere. Her husband had obviously infected her. It was far too late to do anything to help her, but my wife went back to Sa Kaeo, did what she could, and went to see Joy at the hospital. Joy was in a bad state, but she smiled when she saw my wife, and held her hand for long time.

The next day my wife returned home to Pattaya.

Yesterday, my wife told me that Joy was unconscious in ICU.

Today Joy died.

If we had known about Joy’s condition earlier she would still be alive. I would have made sure she received the drugs she needed. But often the doctors won’t tell you when the girls are HIV. There is such a stigma.

My friend’s wife died of AIDS a few years ago. Right up to almost the end, the doctors never told her or her husband (a farang) that she had AIDS. Everyone thought it was just TB. When her family found out she had died of AIDS they refused to attend the funeral and shunned her husband.

Thank God Joy’s family are all around her to make sure her passing is properly remembered.

This country still has along way to go. We all deplore Thaksin, corrupt politicians and businessmen who throw so many billions away, when there are so many, stuck in poverty, and dying of diseases, which these days can be treated.

I wonder how many lives Thaksin could have saved if he had used that tax money on the Shin deal to fund HIV and other medical treatment in the rural areas. Or.. instead of buying Manchester City ‘for the benefit of Thailand’, why didn’t he use the money to fund new hospitals and doctors for the North easterners who love him so much?

Shit happens – but it doesn’t have to be that way.

RIP Joy

[eek]

Very thought provoking Mobi, and very sad.

edit: Sorry, my post seems a bit ...well ..empty. But I really have no words..but felt wrong to read and not post some recognition for what you have said and for Joy. May she rest in peace.

Edited July 19, 2007 by eek

[qwertz]

It goes to show, Mobi, we don't know how the other half lives.

As for Thaksin, I believe he knows less about this side of Thailand than us farangs.

It's sad but console yourself with this thought; farangs have done their bit there to improve the lives of many families.

Think of how many other similar cases there might have been without us.

[BADBRAD]

That is truly sad. I didn't realize the stigma attatched to AIDS was so severe in Thailand that a doctor would not even inform a patient that they had the disease. And that a family would refuse to attend the funeral? Sounds like yet another are where education is sorely needed in Thailand.

[canuckamuck]

Obviously you and your wife had an impact and improved the quality of life for someone who had no claim to your generosity. It’s not about what we capture, but what we release. Good on you Mobi for having the right heart.

[BADBRAD]

........................ It’s not about what we capture, but what we release. Good on you Mobi for having the right heart.

Seconded

[LaoPo]

What a sad story Mobi.

I feel for you and your family.

May she rest in peace.

LaoPo

[GreenShone]

It's sad.......

May Joy R.I.P.

[PattayaAddict]

Very sad story .

I second that -JOY R.I.P angel

[GreenShone]

A bit of social awareness would have saved Joy.

[Mobi]

Joy, in more happier days, at the waterfall:

With some family:

[WaiWai]

Thank you for posting this story.

I, too, was unaware that doctors might neglect to inform the patient & family of an HIV/AIDS diagnosis.

RIP Joy. ( Such a hopeful name .)

[ColPyat]

I wonder how many lives Thaksin could have saved if he had used that tax money on the Shin deal to fund HIV and other medical treatment in the rural areas. Or.. instead of buying Manchester City ‘for the benefit of Thailand’, why didn’t he use the money to fund new hospitals and doctors for the North easterners who love him so much?

Shit happens – but it doesn’t have to be that way.

RIP Joy

A few comments. Doctors are not allowed to disclose a positive HIV status even to close relatives if the patient refuses to give permission, even to help persuading a patient to take anti-retro-virals who refuses to accept his status. This is the law, and there is nothing doctors can do about it.

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

If you want to bring in Thaksin in this sad story, then i would suggest to properly state facts.

[JBL]

Thank you for sharing not only your pain but wth us but sharing Joy's memory - RIP

[WaiWai]

A few comments. Doctors are not allowed to disclose a positive HIV status even to close relatives if the patient refuses to give permission, even to help persuading a patient to take anti-retro-virals who refuses to accept his status. This is the law, and there is nothing doctors can do about it.

Not sure that's strictly true - doctors could lobby to have the law changed if concerned.

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

If a patient is unwilling to accept their HIV/AIDS status, would it not be unlikely they'd seek treatment, free or not,, esp. in a small village ? The issue of stigma has to be addressed, too.

[a2396]

Most countries has a long way to go in dealing with HIV awareness and prevention. I am sure there are many future "time bombs" running around who have no clue to their status or protection of themselves or others. The problem exists in the so-called developed countries as well, as I am sure you know. Treatment (or lack thereof) for those suffering with HIV & who have no insurance in USA is not a pretty sight.

[ColPyat]

A few comments. Doctors are not allowed to disclose a positive HIV status even to close relatives if the patient refuses to give permission, even to help persuading a patient to take anti-retro-virals who refuses to accept his status. This is the law, and there is nothing doctors can do about it.

Not sure that's strictly true - doctors could lobby to have the law changed if concerned.

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

If a patient is unwilling to accept their HIV/AIDS status, would it not be unlikely they'd seek treatment, free or not,, esp. in a small village ? The issue of stigma has to be addressed, too.

Last year a cousin of my wife has died of an AIDS related illness. She refused treatment for AIDS, because she did not accept her status, she only allowed treatment for the accumulating illnesses related to AIDS. In that particular village there is very little stigma against HIV positive left, as almost every single family has been affected already. This village also has a very excellent self help group which was awarded a second prize by the ministry of health for excellence.

Some people refuse to accept their status, there is nothing to be done about it, and other, may seek treatment, but don't allow doctors to disclose their status to anyone (even though the village grape vine is already well informed). We had that problem with the now ex-wife of one of my wife's brothers, and the ex-wife of my wife's uncle who infected him, and after their separation remarried to another unsuspecting man.

There are pros and cons for allowing disclosure against the will of the infected, it's not an easy issue.

[skippybangkok]

A few comments. Doctors are not allowed to disclose a positive HIV status even to close relatives if the patient refuses to give permission, even to help persuading a patient to take anti-retro-virals who refuses to accept his status. This is the law, and there is nothing doctors can do about it.

Not in the real world. Had once staff who had HIV ( and subsequently died ). Of course the Doctor leaked it, and the poor kid got treated like a leper by all the staff. Managed to arrange with HR to allow him to "work from home", where he died a few weeks later.

Dont rely on Local doctors to keep anything secret

[WaiWai]

There are pros and cons for allowing disclosure against the will of the infected, it's not an easy issue.

No, though perhaps the risk of harm to others can be solved by the grapevine, as you mention.

If there's little/no stigma attached to a HIV/AIDS diagnosis, why do people refuse to accept it & inform others who might be at risk ? Is it just a a refusal to accept serious illness/mortality ?

[Mobi]

I wonder how many lives Thaksin could have saved if he had used that tax money on the Shin deal to fund HIV and other medical treatment in the rural areas. Or.. instead of buying Manchester City 'for the benefit of Thailand', why didn't he use the money to fund new hospitals and doctors for the North easterners who love him so much?

Shit happens – but it doesn't have to be that way.

RIP Joy

A few comments. Doctors are not allowed to disclose a positive HIV status even to close relatives if the patient refuses to give permission, even to help persuading a patient to take anti-retro-virals who refuses to accept his status. This is the law, and there is nothing doctors can do about it.

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

If you want to bring in Thaksin in this sad story, then i would suggest to properly state facts.

Col,

In both the cases I wrote about, the ladies in question had absolutely no idea they were dying of AIDs until they were within a couple of weeks of their death when it was far too late to help. I was very close to both cases and I know this is an indisputable fact.

I assume you have been in the villages where so many people are ill and dying due to lack of good medical care and I assume you have seen the sparse treatment they receive at the local hospitals?

Please don't turn this into a pissing contest. Yes, Thaksin did something to better the lot of these people, but so much more could be done, if any of the puyais in power really cared, and didn't do just enough to con the poor into voting for them.

You know very well that countless billions is pissed away in corruption and unnecessary grandiose schemes. The new airport is a case in point.

There really isn't any excuse for not doing more to improve the lot of the most needy amongst us.

P.S. Maybe I didn't make it clear that I was merely quoting Thaksin as a case in point, but I was really condemning the whole corrupt and uncaring system of politicians lining their own pockets rather than doing anything for the poor. IMHO they are all as bad as each other - with very few exceptions.

Edited July 20, 2007 by Mobi

[ColPyat]

I wonder how many lives Thaksin could have saved if he had used that tax money on the Shin deal to fund HIV and other medical treatment in the rural areas. Or.. instead of buying Manchester City 'for the benefit of Thailand', why didn't he use the money to fund new hospitals and doctors for the North easterners who love him so much?

Shit happens – but it doesn't have to be that way.

RIP Joy

A few comments. Doctors are not allowed to disclose a positive HIV status even to close relatives if the patient refuses to give permission, even to help persuading a patient to take anti-retro-virals who refuses to accept his status. This is the law, and there is nothing doctors can do about it.

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

If you want to bring in Thaksin in this sad story, then i would suggest to properly state facts.

Col,

In both the cases I wrote about, the ladies in question had absolutely no idea they were dying of AIDs until they were within a couple of weeks of their death when it was far to late to help. I was very close to both cases and I know this is an indisputable fact.

I assume you have been in the villages where so many people are ill and dying due to lack of good medical care and I assume you have seen the sparse treatment they receive at the local hospitals?

Please don't turn this into a pissing contest. Yes, Thaksin did something to better the lot of these people, but so much more could be done, if any of the puyais in power really cared, and didn't do just enough to con the poor into voting for them.

You know very well that countless billions is pissed away in corruption and unnecessary grandiose schemes. The new airport is a case in point.

There really isn't any excuse for not doing more to improve the lot of the most needy amongst us.

Well, in my wife's home village - the worst affected in the province, with an estimated rate of 10% of the population infected, the care given is extraordinary good. Yes, in many areas there is much to be desired (especially in Bangkok, where the budget is insufficient for the amount of infected, so that many move their registration to the village areas where generally better care is given, surprisingly). We shouldn't forget though that regionally Thailand has the best AIDS care and prevention policies, and given Thailand's overall development status, AIDS is dealt with here excellently. That of course should not lead to neglect clear short comings.

Under the Thaksin government the first and only positive steps towards free health care, especially concerning AIDS have been done. There is no arguing away that clear fact. I wish this would have been done during the previous Democrat government (if this and other "populist" policies would have been implemented by them, we could have very possibly saved us the Thaksin era).

As to reliance of private donations by wealthy individuals to fund health care - i am not very much in favor of it, especially if it is used as an excuse not to implement a modern social security net. As additional funding yes, but a modern, developed state has to primarily fund it's health care from the government budget.

AIDS is a difficult issue, and so is disclosure of ones status. I don't really want to go into this, as i am not exactly sure what my own position on that issue is.

[Siripon]

One has to realise that when someone is diagnosed with a serious or terminal illness and the funds aren't available for costly treatment the doctors may well not disclose the actual condition.

Regarding Aids, doctors are fully aware of the stigma attached and the consequent social difficulties for any patient, when treatment is limited to cheap medicine they don't want to compound the physical suffering with social rejection so the patient is told something alont the lines of,' it will be a long illness'.

With other conditions such as liver cancer the doctor may be frank or not, depending on his view of the the patient's ability to accept the truth. One of my neighbours in Ban Pai, diagnosed as such, was told to go home and rest, the doctors said openly there was nothing more they could do. She died within 2 months, tragically young, late 30s, but at least she died surrounded by family and friends.

Perhaps better than kept alive on machines in a hospital, prolonging the agony.

[britmaveric]

Sad indeed, but least you have her some sunshine in her life even if it were a brief time.

[vermin on arrival]

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

ColPyat,

My understanding was that AIDS treatment was one of the few areas where the drugs weren't free or covered by the 30 baht health care. Am I wrong on this? Or maybe it changed when Thailand came out with its own generic drugs?

[ColPyat]

Secondly, only during Thaksin's government free treatment of AIDS patients was first made available, including free anti-retro-virals, the regular CD4 tests and viral load tests, when they were included under the 30 Baht scheme. Previously AIDS patients simply died if they had not the money.

ColPyat,

My understanding was that AIDS treatment was one of the few areas where the drugs weren't free or covered by the 30 baht health care. Am I wrong on this? Or maybe it changed when Thailand came out with its own generic drugs?

At first it wasn't, you are right, but pressure was exercised, and in the end, i believe it was 2002 or 2003 when Aids treatment was covered by the scheme (and i think some additional funds from a different budget were used as well). Previous to that especially MSF Belgium was heavily involved in training health staff and preparing for national coverage of such a system. What made the whole thing financially possible was the development of GPO Vir, the at that time cheapest generic combination med, that works for about 80 % of the patients without side effects.

Of course the coverage was gradual, at first only a few areas that got over time widened. I believe by now almost all patients have access to treatment.

[November Rain]

Sad story, Moby.

RIP, Joy.

On the AIDS thing. A few years ago, a friend of mine who is married to a Thai man phoned me from his families' village upcountry. I won't say where, but I do know which province. She had just found out that a well-loved cousin of her husband had AIDS. He'd been ill for years, but, again the family didn't know what was wrong. The man was dying. The hospital he was in wouldn't treat him. In theory, they would, but in practice, none of the nurses would touch him. She phoned me a few times every day for advice on how they (the family) should look after him in his last days & whether it was worth putting him in their car for the long & uncomfortable drive to another hospital, where they might take care of him, properly.

I don't know how that came about. How hospital nurses would refuse to touch an AIDS patient. Poor training? Social stigma? Thaksinomics? Something else entirely?

What I do know is that when a man (or woman or child) is left to die, alone & without care, because of stigma; when the farang family member has to phone a friend who is an ex-nurse to get advice, because that's the only medical help or knowledge the family can get from anywhere (in their minds), things are in a very sorry state. Something needs to be done when stories like mine & Mobi's can be told...