How far fight against AIDS has come

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Anthony SB Thanasayan

Published: 1 December 2014

 

Today, December 1, is World AIDS Day.
The worldwide theme this year is focusing on how to achieve an "AIDS-free generation".
 

According to a recent report on the Voice Of America (VOA) broadcast, the United Nations predicts that if prevention and treatment services are scaled up, the epidemic will no longer be a global threat in 15 years.

However, if the goals are not met, the pandemic could worsen, warns the UN. The Washington-based international radio broadcaster went on to point out that in 1984, there were no drugs targeting HIV and AIDS.
 

Today, however, more than 30 are available.
 

Speaking on VOA, Dr Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, described the progress in controlling HIV/AIDS as “extraordinary”.
 

He said if a 25-year-old man or woman, for example, was put on anti-retroviral drugs relatively early in the course of his infection – he could live an additional 50 years if he continued to use the drug.
 

The HIV/AIDS expert of more than three decades described this as "one of the most extraordinary accomplishments in biomedical research in translation", concluded the VOA report.
 

Meanwhile, while AIDS became known in the United States in the early 1980s, the first reported case in Malaysia was in 1986.
It was a year before Pink Triangle (PT) – now known as PT Foundation – started providing counselling and social support services for the gay community in the country.
 

I asked Raymond Tai, marketing and communications director of Pink Triangle Foundation, to describe what the situation was like then.
 

"The Internet was still very much in its infancy and a new thing with not a lot of data, especially on AIDS and HIV," he says.
 

"And the only way to get the right kind of information and support was to call up the counselling telephone line that was managed by the trained volunteers from PT.”
 

Tai went on to point out that although Pink Triangle was originally set up to address gender identity and sexual orientation, the onset of HIV/AIDS changed the agenda to also include providing much-needed information on the disease.
 

"Just as in America, there were a lot of paranoia and ignorance about AIDS here, too.
 

"Because it was seen initially as a gay disease, there was a lot of demonising of lesbian, gay, bisexual and transgender persons," says Tai, who has been working full time with PT Foundation since 2007 and has been volunteering there for more than 20 years.
 

"Today, things are better. People are not as ignorant about HIV/AIDS as they once were.
 

"The irrational fear from society is far less. For instance, there is no longer talk about our authorities wanting to send people with HIV or AIDS away to an island in order to isolate them.
 

"There are also more medical opportunities now to be treated for the condition where it is no longer seen as a death sentence leading to a painful death. Although there is still no cure, it is now more of a chronic illness with improved ways on how to treat it."
 

Tai says what is regrettable and negative is that there is now a state campaign to demonise LGBT, sex workers, drug users and other groups who are most vulnerable to HIV/AIDS.
 

"Many of them are vulnerable because of their lifestyles and need help because they do not have enough education on how to stay safe and not become a victim. This is the same for drug users and others who are in the high risk list in getting HIV/AIDS."
 

Because of this, this time, PT Foundation decided to take its education campaign this past weekend to more popular places such as KL Sentral and Nu Sentral in Kuala Lumpur.
 

It turned out to be a carnival mall event, which the organisers hailed as "a huge success".
 

"The public need to get tested. This is to know their status. If they have been infected, it is important to seek treatment at once so that they can have a normal life."
 

Tai cautions that for those who don't know they are positive and refuse to test themselves, it will only be a question of time before they develop AIDS.
 

And by waiting until then, it will be difficult to treat the disease.
HIV remains just as a virus inside the body. It will continue to multiply and ravage the body's immune system so that there is no way for it to protect itself from opportunistic infections that invade the body.
 

Some of these symptoms include pneumonia, tuberculosis and skin cancer.
 

The patient then becomes so sick that he or she will have to go to a hospital and only then discover that he has AIDS.
 

HIV and AIDS can vary from person to person from six months to more than 15 years – from the moment they contract the HIV virus to the time they develop full-blown AIDS.
 

Testing is important because during this time, infected persons can pass on the virus to sexual partners or through needles with partners.
 

"The PT Foundation is the only non-governmental organisation that provides community-based HIV testing and counselling. All testing are fully anonymous: no name or identity card number is required. Everything is strictly confidential and performed in a totally non-judgmental manner."
 

According to him, PT Foundation's service also provides a full follow-up service for those who test positive.
 

HIV-antigen tests, as well as syphilis tests, use rapid test kits with results produced within one hour. They are performed by volunteers and counsellors who are trained by doctors and professionals counsellors arranged by PT Foundation.
 

For information, contact Raymond Tai at:  

 

raymond@ptfmalaysia.org.
 

To find out what is happening for World AIDS Day, please visit here. – December 1, 2014.
 

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Life begins at 54!

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Anthony SB Thanasayan

Published: 24 November 2014

 

My idea of a perfect birthday celebration was what I did last Friday.
I spent some "quality time" with myself – at home – with those I love and the things that matter to me.
 

That was namely: spending long hours playing with my service dogs who are more than mere pets to me, ringing up a few close friends who support and share in my struggles and chatting with others on social media like Facebook and Twitter, which has become my latest pastime and favourite hobby.
Birthdays are very special occasions that should never be missed. This is true especially for me, considering the fact that my family was told by my doctors on the day of my birth that I wouldn't (chuckle) make it past my first birthday.
 

That was the prognosis given to my bewildered parents in the hospital after the medical team broke the news to them that I have spina bifida.
 

Spina bifida is a serious condition in which part of the spine is not fully developed at birth, leaving the nerves in the back without any protection.
 

Fortunately in my situation, however, there was a layer of skin covering the area in my back. When I was born it was only the size of a small pimple or marble.
 

Today, at 54 years of age, it has grown to half the size of a football.
Spina bifida also affected the control of my bladder and bowel movements. It's a condition I have learnt to accept and live with to this day.
 

So you would understand why I couldn't help feeling rather tickled over a story I read last week about an overseas man who became incontinent and was contemplating suicide because he thought it was the end of the world.
 

He wanted to end his life before he became incontinent. He said by doing so, he could call the shots rather than allow a disease to dictate life for him.
 

By the way, needless to say, most of the specialists who attended to me as a baby have already retired or died. I have clearly outlived them and proven them all wrong.
 

I started using a wheelchair at the age of 10. A children's bone specialist conducted surgery on my good leg which was giving me problems. But it only made things worse by making me permanently paralysed.
 

It was an operation that should never have been done. The doctor never admitted this but blamed it on my body instead. "Unfortunately your body failed to respond to my expert treatment," he said, giggling.
 

Believe it or not, he also told me that he would love to have my “legs completely cut off and put (me) in a flower pot”, adding that I “would look very nice”.
 

The hospital wasn't the only one who didn't want to accept responsibility for their actions.
 

The primary school where I was studying also didn't want a cripple in their institute of learning.
 

They gave the excuse that they didn't have a disabled friendly toilet for students in wheelchairs and I was forced to quit school.
 

From then on, it was one horrible episode after another. I spent most of my time at home doing practically nothing with myself until I was back in hospital in my 20s with a couple of nasty pressure sores that refused to heal for over two years.
 

Then my luck started to change in virtual leaps and bounds.
 

A wonderful foreign couple sponsored me to Singapore to have surgery in which my pressure sores were healed in two weeks.
A church pastor taught me to swim. Although it took me nearly a year to graduate from the babies' pool to the adults, the point is I finally made it.
 

An elderly kind lady taught me to play the piano – first, amazingly, via the telephone for weeks and months, until I went over for face-to-face lessons. (Transport was a major problem.)
 

A music specialist relative I had approached earlier laughed at me when I told her about my interest in learning the piano. She suggested that I be “less ambitious instead and try playing the recorder or folk guitar”.
 

However, my biggest achievement came when I took my first bus ride in my wheelchair in Eugene, Oregon in the US.
 

Then it was wheelchair water-skiing in the sea with a speeding motor boat and even white-water river rafting down a famous river!
These were all conducted by an organisation called Mobility International USA whose purpose was to inspire disabled persons all over the globe to challenge themselves first in order to challenge the world.
 

I returned home a much stronger disability activist than I was and began speaking up and writing about disabled rights and issues.
My US trip also inspired me to train service dogs to help me perform daily tasks such as opening doors, picking up objects from the ground and providing animal assisted therapy.
 

I depend on my three special canines, my Dobermann, German Shepherd dog and Shetland sheepdog, to provide such a service to me today.
 

As I spent my birthday last week blowing out the candles on my birthday cake and hugging and playing with my tail-wagging trio, how I wished that those doctors could see me now! – November 24, 2014.  

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Animal scientists debate and discuss animal use ethics

Animal scientists’ debate on ethical animal use

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Anthony SB Thanasayan

Published: 17 November 2014

 

More than 320 delegates from as many as 22 countries participated at the Asian Federation of Laboratory Animal Science Associations' (Aflas) Congress last Monday.
 

The two-day event which was attended by nations across the Asian, American and European continents – including Oceania – was held at a leading hotel in Kuala Lumpur.
 

The occasion was the sixth of its kind which has taken place every two years since its inception in early 2000 – with 10 laboratory animal science associations from 10 member countries.
The ten nations are China, Chinese Taipei, India, Indonesia, Japan, Korea, Malaysia, Philippines, Singapore and Thailand. 

 

In addition to promoting technical and education cooperation in the field of laboratory animal science, animal welfare is a chief concern for Aflas.
 

The 2014 Aflas Congress was officiated by Datuk Dr Mohamad Azmie b Zakaria, the director-general (DG) of the Department of Veterinary Services Malaysia. In his plenary speech, the DG spoke about the regulatory control of animal use in Malaysia.
 

Other topics were delivered by eminent authorities in their respective fields from animal welfare to various specialists in animal experimentations.
 

One of the key highlights was a paper from Japan by the Japanese Society for Alternatives to Animal Experiments.
 

They stressed that an international agreement of what is known as "the three Rs" – replacement, reduction and refinement – in animal use is something all nations cannot do without.
 

Speakers from the Association for the Assessment and Accreditation for Laboratory Animal Care International covered topics stressing on how vital proper regulation of animal use is in each country in order to bring about good animal welfare practices and good science.
 

Other plenary sessions focused on how to make meaningful translations of cancer research results from animals to humans, and the necessity of “good laboratory practice" (GLP) in producing sound research.
 

Speaking to me after the congress, organising chairman and local veterinarian Dr Goh Yong Meng said that based on feedback received from the participants, the congress had mostly been an enlightening experience for everyone.
 

"It became very evident that as scientists, we have to talk about and keep our focus on the scientific facts and legislation of animal welfare – rather than on the emotionally-driven romantic ideals in animal use," said Dr Goh, who also sits in the committee of the Laboratory Animal Science Association of Malaysia.
 

"We hope that the recently concluded Aflas Congress 2014 will serve as a strong catalyst not only to drive sound animal research in our country and region; but more importantly, to highlight the urgency for the Animal Welfare Act to be legislated in the near future in Malaysia.”
 

Dr Goh, who is also an associate professor in a local university, went on to explain that the Aflas congress came about in response to the 1975 book by the Australian philosopher, Peter Singer called, "Animal Liberation". The book challenges the rights of human beings to use animals for any purpose.
 

That idea grew into the founding philosophical principle of animal liberation movements that were against the use of animals in experiments, integrating principles from an earlier book by British researchers William Russell and Rex Burch in 1959 called, "The Principles of Humane Experimental Technique".
 

According to Dr Goh, the book advocated the "three Rs" in animal experimentation.
 

This approach, he said, enabled animal welfare advocates and researchers to find, and agree on a common solution towards responsible animal use in advancing research.
 

"As a result, the membership of laypersons and/or animal welfare advocates in Institutional Animal Care And Use Committees (IACUC) – a special group officially set up in research/teaching institutions globally – is a common sight which was made mandatory since 1980 in Malaysia.
 

"The outcome has been mutually beneficial, as this movement moderates working together towards finding scientifically valid alternatives to animal use, to safe guarding animal welfare and to ensure responsible use of animals."
 

Citing the Ebola scourge across the globe and a possible vaccine for dengue in the home-front, Dr Goh, who is also a researcher in finding a cure for diabetes among human beings, said that for the first time scientists are being "forced to consider using drugs (on humans) that are still in a development or experimental stage.
 

"The main reason why these drugs and vaccines are delayed is because the regulating authorities want to ensure that the products' risks on humans is at its minimum.
 

"Currently, the best approach is to conduct safety testing which almost certainly uses animal models which is inevitable and mandatory for most regulating agencies in the world, such as the US Food and Drug Administration and the national Pharmaceutical Control Bureau in Malaysia.
 

"While the debate is still on the necessity, morality and validity of animal testing, every medicinal product and medical devices that we use today would have undergone some degree of testing, in non-human species, prior to human clinical trials.
 

"Therefore responsible animal use is a critical aim in regulating animal use in institutions and organisations and institutions with active animal model studies are required to set up an IACUC.
 

"Malaysia's Animal Welfare Bill (scheduled to come out early next year) is currently drafting a law to regulate animal studies in research and development.
 

"This is necessary not only to promote the growth of biotechnology-based knowledge economy in the country, but also to safeguard the nation from being used as an outsourcing ground for animal tests that cannot be performed, or even deemed excessive in developed countries," said Dr Goh. – November 17, 2014.  

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Plight of domestic workers

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Anthony SB Thanasayan

Published: 10 November 2014

Malaysia is blessed with a diverse number of religious festivals and holidays.
However, the sad reality is not everyone gets to celebrate them when they come around.
The recent Deepavali, for instance, is a good example.

About 30 domestic workers in Kajang, Selangor, say they did not enjoy the religious holiday with their families because of the predicament that they are in – and the little or no support that they get from the authorities.     Thenmoly Barack, 32, is project officer of Friends of Women's Organisation Selangor (Persatuan Sahabat Wanita Selangor or PSWS). She joined the non-governmental organisation in 2008, although it has been in existence for 30 years.
Thenmoly told me recently about what the ongoing struggle is like for many women domestic workers through the life of one Saras M (not her real name).
Saras, 49, is the mother of two. Her boy, the eldest, is 10. Her girl is nine.
Saras became a single parent when her husband left her nine years ago.
Things became increasingly tough over each Deepavali after that for her family – especially with bread-and-butter issues.
"Deepavali last month was particularly miserable for them," Thenmoly says.
"Saras only had RM50 to spend for the occasion and the single mum was torn between getting her children what they wanted and what they really needed."
After a long decision, Saras decided to spend RM10 on some fireworks so as not to disappoint her eager children. RM6 went towards some festive cookies. The rest of the money was spent on meals with nothing left for new clothes.
It is never easy looking after growing children when you are a domestic worker.
Saras begins her day at 4am. After preparing breakfast for her children and getting them ready for school, work starts at 8am.
The single mother is game for anything – as long as it puts food on the table for the children every day. Then there are also the kids’ educational needs and bills to take care of.
Saras does virtually everything her employers tell her to in their homes. This includes cleaning, cooking, bathing their kids to washing their cars.
She will go to any home as long as she isn't busy working somewhere else – anything to earn an extra ringgit or two.
And because she is so desperate, even insults fail to deter her.
One of her current employers forbids her from using their bathroom because they don't like the idea of "people like her" using it. So she has to go to the nearest shop to use the facilities when nature calls.
Her children who sometimes tag along are not allowed inside the house. They wait outside instead, or play along the roadside while waiting for their mother.
Saras works at least 12 hours a day, hoping to make extra cash whenever she can. She makes an average of about RM700 to RM800 a month. On a good month, an extra RM100 goes a long way.
"Life simply isn't fair for many of the domestic workers like Saras. The amount they make with such hard labour is not worth or equal to the effort which they put in – and employers often exploit such situations," says Thenmoly.
"There is no quality of life or a future for women domestic workers, in particular, who are also single parents, unless attitudes start changing significantly in our society," she adds.
Thenmoly says domestic workers are not given a minimum wage, Employees Providence Fund (EPF) contributions and social security (Socso) or even insurance to protect them when they are sick or injured in a job hazard.
"This is why we at PSWS are empowering these women to form a union with a woman domestic worker as a leader where they will at last be able to voice their concerns to the relevant authorities.
"Most of these 30-odd women are single mothers, except for a couple who are married. However, they receive no support from their husbands," says Thenmoly.
To get in touch with her if you would like to help PSWS in its mission, call: Office 03-8737 8380 or mobile: 010-5072 131. Email: sahabatwanita@gmail.com. – November 10, 2014.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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Creating history with the Penang Parkinson’s Disease Association

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Anthony SB Thanasayan

Published: 3 November 2014

Madelene Ong (front row, fourth left) holds a tambourine at the launch of the Penang Parkinson's Disease Association (PPDA). – November 3, 2014.

 

Local history was created on October 26 for persons with disabilities in Penang with the launching of the first nongovernmental organisation for People with Parkinson's (PwP) in the popular island.

Called the "Penang Parkinson's Disease Association" (PPDA) or in Bahasa Melayu, "Persatuan Penyakit Parkinson Pulau Pinang", the epoch-making morning event began at 9am and ended at lunchtime.
It was held under a large tent in the open field at the Polo Ground situated in front of the governor's mansion in Seri Mutiara.
Jointly organised by the Penang Multiple Sclerosis Support Group (PMSSG), the occasion drew as many as 120 persons. They comprised committee members, volunteers, sponsors and members of the public.

Participants were treated to a variety of activities.
These included a couple of speeches by both presidents of the organising societies.
 

Peter Lim spoke first on behalf of PMSSG whilst Madelene Ong gave her speech for the PPDA.
 

This was followed with the customary ribbon-cutting ceremony to declare the event open.
 

The presentation of donations took place afterwards by various companies and groups to both societies.
 

An informative talk about Parkinson's disease – as well as multiple sclerosis (MS) – was delivered by a Penang neurologist with a special expertise on the conditions.
 

The audience were all ears when he disclosed the latest findings and treatments on Parkinson's and MS. There is no cure for both diseases to this day.
 

However, the most interesting part of the event was a special walk to create awareness about the two health issues.
 

Each participant had to choose a partner for the walk.
 

They had to tie one of their legs with the other as a couple for the exercise which lasted about 20 minutes.
 

The purpose of the session was to illustrate the fact that with or without disabilities, all human beings are interdependent on each other.
 

The half-day programme also included a therapeutic drum musical session. It went on for almost an hour and had almost everyone dancing to its pulsating and intoxicating rhythm and beats.
 

The lucky draw was the final activity for the day before everyone left with smiling faces.
 

After the event, Madelene Ong, 47, who lives in Farlim, Penang, told me she was extremely happy that everything turned out to be a great success.
 

"The estimated 400-odd patients with Parkinson's in the island – and others in future – have an NGO support group to turn to now," said Ong who works as a part-time state registered clinical researcher.
 

"Previously, PwP in Penang had to depend on the Malaysian Parkinson's Disease Association all the way in Kuala Lumpur for support, which they did very well, but with this new chapter and NGO, help is much closer now," she said.
 

Ong was inspired to take up the struggle of PwP after her dad, Peter, was diagnosed with the sinister disease in 2011. He passed away last year.
 

Today Ong vows that she is here to stay for PwP.
 

"We now have a little over 20 members in PPDA. The more mobile ones attend our monthly meetings which proves to be a very empowering experience for them," explained Ong.
 

"However, the bigger challenge will be to get members in wheelchairs who are in the advanced stage of Parkinson's to also take part in our programmes."
 

On the issue of welfare, Ong said the PPDA's major task is to get the government to recognise all PwP as disabled persons – regardless of the fact whether they are at the early, intermediate or advanced stage of the disease.
 

PPDA, which was officially registered on the August 8 this year, had made a request of this through a letter by a Parkinson's specialist. 

 

However, it was rejected by the Welfare Department.
 

Several members from PPDA faced the same situation when they tried to apply directly for the disabled identification card from the government.
 

Madelene can be contacted at 0162054388 or go to the Penang Parkinson's Disease Association on Facebook. – November 3, 2014.  

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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