RED Agents on the move
YEA,
Red Agents on the move :
but, where will be next ? check the Red Team out at Venue : SMK Taman Bukit MaluriTime : 9.00am - 12.00 pmDate : 23 / 4 / 2010
talking about spreading awareness for HIV/AIDS, none can be done if you do not take the first step.
WE had taken it. have you?
followed is an article on how a little effort can make a gigantic difference.
---------------------------------------------------------------------------------------------------------------------------------TUESDAY, APRIL 6, 2010
The Woman Who Made HIV Real to a VIP
I'm away visiting my kids, folks, hence the long silence. Meanwhile so many things have been happening that I can't keep up to comment on them. Others have written some great comments on various issues that I don't think I can match them.
But one little personal event happened which I thought I would commemorate. In one way it's very sad and indeed I feel very bereft but on the other hand it's also possible to see what changed in our society because of one person.
Early this morning my friend LYL passed away. She wasn't anyone famous or wealthy or someone we would have thought was extraordinary. But to me she was special.
I met LYL around 1995. At that time I had just started working in HIV and was beginning to learn about all the issues involved with it. One of the main issues (and sadly still is) was stigma and discrimination. It was severe enough that there were doctors in private hospitals who refused to treat people with HIV and sent them off to government hospitals to be seen by the few over-burdened doctors there. At the time there was not a lot that even those doctors could do because there were hardly any treatments for anyone with HIV.
The plight of Malaysians living with HIV at the time was quite severe. Most lived in fear of society's judgment on them. They were afraid of applying for jobs or of losing what jobs they already had. Most felt there was no better fate for them than death. But elsewhere in the developed world, people with HIV were fighting stigma and prejudice and were beginning to find hope in the treatments that were becoming available there.
So my colleagues and I decided that we needed to make our case to the country's political leadership. So as President of the Malaysian AIDS Council I wrote a formal letter to the Prime Minister asking for an appointment.
And waited. And waited. Nine months later, we got a call. Nelson Mandela had cancelled his visit to Malaysia and a slot had opened up for us! It was to be a week later. (Perhaps Mandela, an HIV campaigner himself, somehow knew the appointment was really important to us.) So my colleagues including Dr Christopher Lee who is now the head Infectious Diseases doctor in the Ministry of Health, Professor Dr Sharifah Hapsah Shahabuddin (now Vice-Chancellor of UKM) and several others had meetings to prepare for our presentation.
We also made one important decision and that was to include a person with HIV in our group. That person was LYL.
LYL was a teacher whose fiance had died of an AIDS-related illness . It was only then that she found out about her own infection. Instead of retreating into depression, she decided that she would do what she could to educate others about HIV and to advocate for better treatment of people living with the virus. She often spoke at seminars and workshops, often using a different name.
When we went to meet the PM at his office at Parliament House, we had programmed our presentation so that LYL would speak last. I spoke about the general state of the epidemic and Dr. Lee spoke about the need for better medical treatment for people with HIV. After we were through, LYL got up nervously and started. "My name is LYL, I'm a teacher and I'm HIV-positive". I remember Dad's eyebrows shot up in surprise at the sight of a perfectly normal-looking young woman standing in front of him disclosing her status.
LYL spoke about what it was like to live with a virus that she always had to keep secret. She talked about her service teaching students in a government school and how she feared someone would find out her status and fire her. And how what she really needed was the treatments that were coming online in the West but were yet unavailable in Malaysia at the time. Those treatments meant everything between life and death for people with HIV.
I know that that little presentation did a lot. At our fundraising dinner a few weeks later, the PM mentioned how sad he was to hear of doctors turning away patients with HIV. I remember Dr Lee had tears in his eyes when he heard that.
Three years later at the opening of the 5th International Congress on AIDS in Asia and the Pacific (ICAAP) in KL, the PM announced that Malaysia would look at compulsory licensing of antiretroviral drugs in order to make them more accessible to Malaysians living with HIV by making them cheaper. Indeed soon after that, the price of the drugs went from over RM2000 a month to about 10% of the price, thus allowing more people access to them.
(And I know LYL had an effect on Dad because he often asked after her.)
Eventually the Ministry of Health managed to provide free treatment to Malaysians living with HIV in government hospitals. Unfortunately the take-up isn't 100% mostly, I think, because few people know that they can get this treatment for almost free. And many are still deterred by the stigma and discrimination around HIV and that is also why they don't go to get tested and onto these life-saving drugs.
But LYL was one of the beneficiaries of these drugs. Although in the last few years she has not been too healthy, she did survive far longer that she would have without them. And while she lived she was always an inspiration of strength to all of us who worked in HIV. She was always a quiet person, not one to shout out her frustrations with the state of prevention and treatment of HIV in our country. But she was an example of a model Malaysian just by being a person of such dignity, care and compassion for others.
Every once in a while I would get an sms from LYL wishing me Selamat Hari Raya or whatever the occasion was and asking me how I was. Not once did she ever sound depressed, bitter or complained about anything. She liked instead to ask after my parents and children.
Two days ago her brother sms'd me to say that LYL was in a coma and in hospital. Being thousands of miles away I couldn't do much except pray that she would recover somehow. But friends who visited her said there was not much hope. She came out of her coma briefly and was conscious enough to know that she was surrounded by family and friends. Then in the early hours she slipped away, finally at peace.
The whole HIV community mourns the passing of LYL, the first Malaysian to stand in front of a Prime Minister and make him understand what it means to live with HIV. That act of courage alone changed the lives of so many people. Not least by making the lives of HIV+ people real to those without the virus.
TUESDAY, APRIL 6, 2010
The Woman Who Made HIV Real to a VIP
I'm away visiting my kids, folks, hence the long silence. Meanwhile so many things have been happening that I can't keep up to comment on them. Others have written some great comments on various issues that I don't think I can match them.
But one little personal event happened which I thought I would commemorate. In one way it's very sad and indeed I feel very bereft but on the other hand it's also possible to see what changed in our society because of one person.
Early this morning my friend LYL passed away. She wasn't anyone famous or wealthy or someone we would have thought was extraordinary. But to me she was special.
I met LYL around 1995. At that time I had just started working in HIV and was beginning to learn about all the issues involved with it. One of the main issues (and sadly still is) was stigma and discrimination. It was severe enough that there were doctors in private hospitals who refused to treat people with HIV and sent them off to government hospitals to be seen by the few over-burdened doctors there. At the time there was not a lot that even those doctors could do because there were hardly any treatments for anyone with HIV.
The plight of Malaysians living with HIV at the time was quite severe. Most lived in fear of society's judgment on them. They were afraid of applying for jobs or of losing what jobs they already had. Most felt there was no better fate for them than death. But elsewhere in the developed world, people with HIV were fighting stigma and prejudice and were beginning to find hope in the treatments that were becoming available there.
So my colleagues and I decided that we needed to make our case to the country's political leadership. So as President of the Malaysian AIDS Council I wrote a formal letter to the Prime Minister asking for an appointment.
And waited. And waited. Nine months later, we got a call. Nelson Mandela had cancelled his visit to Malaysia and a slot had opened up for us! It was to be a week later. (Perhaps Mandela, an HIV campaigner himself, somehow knew the appointment was really important to us.) So my colleagues including Dr Christopher Lee who is now the head Infectious Diseases doctor in the Ministry of Health, Professor Dr Sharifah Hapsah Shahabuddin (now Vice-Chancellor of UKM) and several others had meetings to prepare for our presentation.
We also made one important decision and that was to include a person with HIV in our group. That person was LYL.
LYL was a teacher whose fiance had died of an AIDS-related illness . It was only then that she found out about her own infection. Instead of retreating into depression, she decided that she would do what she could to educate others about HIV and to advocate for better treatment of people living with the virus. She often spoke at seminars and workshops, often using a different name.
When we went to meet the PM at his office at Parliament House, we had programmed our presentation so that LYL would speak last. I spoke about the general state of the epidemic and Dr. Lee spoke about the need for better medical treatment for people with HIV. After we were through, LYL got up nervously and started. "My name is LYL, I'm a teacher and I'm HIV-positive". I remember Dad's eyebrows shot up in surprise at the sight of a perfectly normal-looking young woman standing in front of him disclosing her status.
LYL spoke about what it was like to live with a virus that she always had to keep secret. She talked about her service teaching students in a government school and how she feared someone would find out her status and fire her. And how what she really needed was the treatments that were coming online in the West but were yet unavailable in Malaysia at the time. Those treatments meant everything between life and death for people with HIV.
I know that that little presentation did a lot. At our fundraising dinner a few weeks later, the PM mentioned how sad he was to hear of doctors turning away patients with HIV. I remember Dr Lee had tears in his eyes when he heard that.
Three years later at the opening of the 5th International Congress on AIDS in Asia and the Pacific (ICAAP) in KL, the PM announced that Malaysia would look at compulsory licensing of antiretroviral drugs in order to make them more accessible to Malaysians living with HIV by making them cheaper. Indeed soon after that, the price of the drugs went from over RM2000 a month to about 10% of the price, thus allowing more people access to them.
(And I know LYL had an effect on Dad because he often asked after her.)
Eventually the Ministry of Health managed to provide free treatment to Malaysians living with HIV in government hospitals. Unfortunately the take-up isn't 100% mostly, I think, because few people know that they can get this treatment for almost free. And many are still deterred by the stigma and discrimination around HIV and that is also why they don't go to get tested and onto these life-saving drugs.
But LYL was one of the beneficiaries of these drugs. Although in the last few years she has not been too healthy, she did survive far longer that she would have without them. And while she lived she was always an inspiration of strength to all of us who worked in HIV. She was always a quiet person, not one to shout out her frustrations with the state of prevention and treatment of HIV in our country. But she was an example of a model Malaysian just by being a person of such dignity, care and compassion for others.
Every once in a while I would get an sms from LYL wishing me Selamat Hari Raya or whatever the occasion was and asking me how I was. Not once did she ever sound depressed, bitter or complained about anything. She liked instead to ask after my parents and children.
Two days ago her brother sms'd me to say that LYL was in a coma and in hospital. Being thousands of miles away I couldn't do much except pray that she would recover somehow. But friends who visited her said there was not much hope. She came out of her coma briefly and was conscious enough to know that she was surrounded by family and friends. Then in the early hours she slipped away, finally at peace.
The whole HIV community mourns the passing of LYL, the first Malaysian to stand in front of a Prime Minister and make him understand what it means to live with HIV. That act of courage alone changed the lives of so many people. Not least by making the lives of HIV+ people real to those without the virus.
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