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10 Jul 2009

Living with HIV - Those magic pills (Part 3)

HIV is no longer seen as a death sentence but as chronic and manageable disease. But the cost of taking the life-saving drugs is more than a financial one, says SL Yang who recalls having to battle the side effects and stick to a strict regimen of over 20 pills a day in the earlier days.

It is a known fact that HIV is not a curable disease. Patients who go on medication have to take it for the rest of their lives in order to suppress the virus in the body, preventing it from further weakening the immune system.

In the early days of the epidemic, not much was known about the virus itself – and more importantly, there was no medication available. Until the mid-1990s, patients had no viable treatment available – and many countless died during this period. By 1995, there seemed to be some light at the end of the tunnel – when protease inhibitors were introduced. A selection of drugs was available to combat the virus – and they were used in combination to help suppress the virus in the body.  Since then, more drugs have become available due to a combination of research and improved technology.

Anti-Retroviral Therapy – or ART, consists of a cocktail of drugs a patient takes each day to stop the virus from replicating in the body. I went on ART when the drugs were made available in Singapore in 1995. ART does not work successfully for an indefinite period. The virus, usually after a few years, will mutate and become resistant to the drugs. That is why monitoring blood levels are so important – if the drugs you are taking start to become less effective, the results will show up in your blood work. And this means you will have to change your drug combination for treatment.

Once ART was introduced, first in the West, the results were dramatic. People stopped dying – and got healthier… hospices that were previously full were now empty. Many patients got well enough to go back to work and live fairly normal lives. HIV slowly morphed from a death sentence into a disease that could be chronically managed.

The days when HIV patients were pictured as gaunt and dying are no more. But in place of this is a picture of complacency – many think that HIV patients can now take their medication and everything will be fine. But there is more to this picture.

In those days, I used to take a combination of three kinds of drugs – and I had to faithfully take them three times a day. If I did not – and do not – adhere to this strict regimen, the likelihood for drug resistance would increase. I tried counting the number of pills I had to take once – and stopped counting after I reached 20. Some pills were as big as a fifty-cent coin and I would have to swallow a handful of these each time. Gagging on these pills was not uncommon.

Whenever I had to take my mid-day batch of pills, I had to sneak off to the rest room to swallow them.

In addition to developing the discipline to stick to your drug regimen every day – there were the side effects, which affected different patients in different ways.

I remember getting diarrhoea each time I took a certain type of drug. Thankfully my body got used to it – but only after two months. Another one gave me nausea after awhile – I would suffer from dry heaving for no reason – and I had to eventually forsake it and switch to another drug. There is a limited choice of drugs available for treatment – so each time you get drug resistance, it means there is one drug less you can use – and eventually there won’t be any more available to treat you. That is the reality I have to live with each day.

As if it’s not enough bearing the physical burden of this disease – in addition to an emotional one… A third burden – and this can sometimes mean life or death, is a financial one. At one time, I was paying close to S$1,500 (US$1,026) a month for these life-saving drugs. And during a period when I was not working, I still had to fork out the money for these drugs. There were times when my family pitched in to help me pay for those medications.

I have seen cases where a family – husband, wife and two children – were all infected. They could not afford treatment for all, only for two. The parents had to make the heartbreaking decision on who in the family the family would get treatment, and who would be denied it. It is times like these when I think: “Life sucks”. No one should have to make that kind of horrible choice.

Till today, Singapore does not provide subsidies for medication for these life-saving drugs. Fortunately, there are now affordable alternatives for patients here – in the form of generic drugs produced elsewhere.

Governments in Brazil and Thailand produce ART drugs for their own people. Private companies in India are also producing generic drugs. The contentious issue of Intellectual Property Rights claimed by the pharmaceutical companies have kept prices very high – and ART drugs were largely unaffordable by more than 90% of the world’s HIV population in the 1990s. But with World Trade Organisation (WTO) negotiations and the global manufacture of generic ART drugs, millions are now getting treatment – including the hundreds of patients who would otherwise not have been able to afford it in Singapore.

I am profoundly grateful to the Kingdom of Thailand – the government there produce their own generic drugs and even innovated the three-in-one pill – including three ART drugs combined into one single tablet to be taken twice a day.

I travel regularly to Thailand to buy these generic, life-saving drugs. These have been keeping me alive for the past few years… and I know many more Singaporeans who also take these generic drugs. Every time I make my drug pilgrimages to the Land of Smiles, I am humbled.

I know I not only owe my life to my medical caregivers – I am reminded that I owe my life to global activists fighting for affordable treatment. I am also reminded I owe my life to enlightened politicians and policy-makers who view affordable treatment as a basic human right. Clearly, more needs to be done in the field of access to care and treatment for HIV patients.

But for now, the generic drug runs are my reality check – they remind me of my mortality – but I also celebrate each day I am able to wake up healthy and alive.

This is the third installment of a 6-part series which will run every other Friday.

Reader's Comments

1. 2009-07-10 19:26  
we are truly indebted to Mr Yang for this moving account of the struggle with HIV

Gavin x
2. 2009-07-10 21:38  
It is good that SL Yang is sharing his life experience with us all. My heart goes out to you SL Yang. I believe many of us reading your story feel the same way. I hope with all my heart that life goes well with you now. I like your last sentence when you mentioned that you celebrate each day able to wake up healthy and alive. That also reminds me to cherish my own life with all its ups and downs. Too many times we complain over the pettiest matters but reading your life story really makes all my petty matters nothing compared to what you are going through. Your strength and courage in living with HIV is much to be admired and respected and honoured. Thank you so much for making what the true meaning of life is. I look forward to reading your next section on your story. God bless you. He is with you and walking with you. Thank you again.
3. 2009-07-10 22:30  
I salute you SL Yang. Thanks for the honest account of your journey. I wish you many many more years of health and happiness. Be strong and look forward, your courage is the greatest form of strength to many people that share the same journey with you.
4. 2009-07-10 23:49  
Take good care of yourself SL....
May God bless those with chronic diseases... Be it HIV or cancers....
God bless those who shower care and concern to those ill and unfortunate...
5. 2009-07-11 00:42  
yet again, a chance to slow ourselves down, & think.
thank you SL Yang!
6. 2009-07-11 01:31  
wish you the best health and one more wish: rest of the world like s'pore stop HIV discrimination, and no more individual discrimination too
7. 2009-07-11 02:48  
So sad to read this line. "Till today, Singapore does not provide subsidies for medication for these life-saving drugs."
8. 2009-07-11 11:12  
thank you for this piece. It is bringing reality to all of us who, like you have said, become complacent.

9. 2009-07-11 18:58  
Dear SL Yang thanks for sharing this intimate part of your life. Through articles such as yours I think ppl can stop being scared and horrified of the illness but start to respect, understand and prevent it from spreading further.
Lets hope in the years to come medical aid will become more affordable for all the illnesses out there.
I admire your courage and honesty!
All the very best Graham.
10. 2009-07-11 20:14  
khob khun maak...
11. 2009-07-12 12:16  
As a Thai citizen, I am happy to hear a positive story regarding my country.

I remembered a few years ago when the news about Thailand wants to use CL to make generic HIV medicine. There were some concern regarding the reaction from the western companies who own the patent. Some local politicians were afraid that US might use some counter measures in response to Thailand's invoking CL to produce the generic.

After the news faded away from newspaper I did not know what happen to the program. I am glad to hear to it did happen.
12. 2009-07-12 17:22  
These kind of stories are pretty depressing, because they make you think of all the millions of people who DON'T have access to such medications, and are, in effect, condemned to die some time 'early', perhaps in a few years, or perhaps in a lot of years, but either way, undoubtedly decades short of the 'normal' life they would have had otherwise.

I'm thinking of two Positive friends of mine living with very different cicrumstances; one guy living in London, who has standard EU-wide access to free medication (so, after finding the right course of pills for him that don't give him severe side-effects, although he has some, he feels and looks much better, and is just getting on with having a normal life), but the other friend couldn't get a visa to stay in London, and went back to his home country, which does not have free medication.

So, he cannot afford the medication he needs, and is just living life, with decreasing health, knowing that he is almost certainly facing changing into full-blown AIDs in a few years, and that... well, what can I say - I worry about Him a lot, and his health (but never about my other friend in London, who's fine now that he's on Meds).

Whether you have the medicine to treat the illness, and turn it into an (almost) normal, manageable, long-term illness in the background of your life, OR if you don't have medicine, and are just trying to live life and hope not to get sick, or have as many 'good' years as you can, either way, it's awful to live with such a status, but just a little easier to live/cope with depending on where you live, and what local health/financial policy is there.

Just hope that Everyone can be okay, and have as many Good years as they can, avoiding getting sick... :-/
13. 2009-07-12 20:23  
Thank you, thank you, thank you! You've enlighten us. Stay strong!
14. 2009-07-12 23:36  
HIV positive people in Malaysia are definitely thankful to Thailand for the same reason. I'm actually very surprised that Singapore does not provide a subsidy for AZT in this day and age.

I'm curious though, Mr. Writer.

Why would you sneak to the rest room for your mid-day pills? Was it because of the side effects? Were you in the closet at that time with your co-workers? Did the company discriminate against HIV positive employees at that time?

I'm just curious to know that much...
Comment #15 was deleted by an administrator on 2009-07-13 21:40
16. 2009-07-14 02:48  
"Singapore government view HIV as a lifestyle disease and thus didnt give subsidy to HIV patients."

What?! C'mon...that can't possibly be true, right? Example: An unfaithful husband/BF infects his wife/GF - should she be denied medicine, based on his actions? She's entirely blameless. Or what about a couple who have a HIV Positive child/children before they learn of their status - is the child also denied treatment, as a 'lifestyle disease'?

Under what circumstances, exactly, are people entitled to get medical treatment in Singapore for this - or does the government there - not exactly known in the rest of the world for treating her citizens equally or fairly, and especially those who 'step out of line' - simply wash its hands of the less fortunate in its society? All SIngaporeans are equal - but Some are more equal than others, huh?

That's a very shocking thing to say/consider, if that government just casually and coldly refuses to help its citizens like that - that's very, very much at odds with the 'European' way of thinking... Poor unfortunates there, if so...
17. 2009-07-14 05:14  
SL, stay strong. You are loved!

Now, can everyone see why so so many regard Singapore as a disgrace and a disease to humanity. You should see how the system treat cats & dogs over there too. Shameless administration.
The wheels of karma turn, slowly but surely. So do as it pleases but in time, what goes around comes around.

Thailand is indeed a blessed nation to so many for so many reasons. We are thankful.
18. 2009-07-16 00:34  
See http://www.straitstimes.com/Breaking%2BNews/Singapore/Story/STIStory_308873.html

The Ministry of Health's stand is "that such medicines do not provide a cure", and thus does not provide subsidy for HIV treatment. It's a feeble excuse given other illnesses are also incurable, e.g. high blood pressure, diabetes.

Some people are more equal? Nope, in Singapore it's called "meritocracy".
Comment #19 was deleted by its author on 2010-11-08 08:52
20. 2009-07-24 00:49  
With today's medical breakthroughs, It is possible for HIV+ people on the ARV medication "to live up to their normal lifespan".

However, It is a particular concern as most people infected by HIV usually in their 20s, 30s and 40s. They are in their "Prime Working Age Years". ARV medication may helps them to continue to be "the productive and contributing members of the society". Besides, according to ” the Swiss Federal Commission for HIV / AIDS's Study concludes that, “An HIV-infected person on antiretroviral therapy with completely suppressed viraemia (“effective ART”) is not sexually infectious, i.e. cannot transmit HIV through sexual contact.”

However despite the substantial benefits of ARV medication, The "Financial Cost" is certainly a major issue. As according to my knowledge neighbouring countries like Malaysia and Indonesia, the governments there heavily subsidized the treatment of their HIV+ nationals, whereas HIV medicines are provided practically Free of Charge. I am surprised to hear that HIV medicine is not subsidized at all in Singapore. It may be correct Singapore being a High Income Nation is ineligible for most of the foreign financing assistance as what Indonesia is getting.

However, they are also many Developed Asian Nations like HK, Taiwan, South Korea and etc heavily subsidized ARV medication, despite they are also ineligible for foreign financing. http://www.anamahtan.com/downloads/papers/hiv-aids.doc
I believe it should be "a matter of government policy". Singapore Government with its ample financial resources should grant the same treatment to HIV+ patients here as what the neighbouring nations do. If the HIV+ citizens can "knock their sense" by touching stories like above and also by informing them the substantial benefits of ARV medication to the society. In that case HIV+ patients should organize themselves and petition to the government. Good Luck!!!
Comment edited on 2010-04-22 23:42:50
21. 2009-08-06 17:24  
Thank you Thailand.
My friends and I are very grateful for your help towards these HIV patients.
I wish Singapore is doing more to help these patients.
Nevertheless, without Thailand's help, many Singaporeans would have died long ago.
22. 2009-08-10 18:10  
I am truly, deeply touched... and enlightened by your articles. You are very brave, a true fighter in every sense of the word. Thank you for sharing mr. yang. May you be blessed always.
23. 2010-01-23 08:15  
Thank you Sl Yang for sharing your story and giving us perspective on your journey. Let us all pray and meditate for a cure. I am a Nurse from USA and me and my nurse friends who care for HIV+ pt.'s believe that there is a conspiracy in the Big Pharma (Pfizer) that they actually have a cure but wont share it since they would loose Billions if not trillions of dollars. Its plausable to since everyone can see how greedy they are in trying to stop Thailand and India from making generics. My BF who is Japanese was watching NHK and he heard researchers found a cure in Burma/Myanmar. has anyone else heard this?
24. 2010-01-25 03:02  
I too think there is a very odiou and insidious conspiracy. Just recall the western biopharmas visit countries such as India, and parts of China, and the central and southern Americas to harvest information and herbal and organic historic tribal remedies. The then "at great cost" release a claimed breakthrough and declare their patents and hold hostage a great number of poor people. It beyond ogreish. It speaks ill of humanity that such decisions can be made to brazenly or deceptively STEAL knowledge and the lock it up or refuse to market it at reasonable and affordable prices. Probably the only way to see a massive price drop and heavy domestic subsidization is for hundreds of millions to be made infected to then make it crime against humanity to hoard such medicines. But, then the bpharms will claim procuction issues rather than give up the patent or might license it at extortionist pricing.
25. 2010-02-01 10:50  
Check this out:

Scientists say crack HIV/AIDS puzzle for drugs* Study solves puzzle that eluded scientists for 20 years


26. 2010-06-22 18:10  
thank you soo much for the heart-touching story...
it is really make me strong!
Comment #27 was deleted by its author on 2011-06-14 20:37
Comment #28 was deleted by its author on 2011-06-14 20:32
Comment #29 was deleted by its author on 2011-06-14 20:36
30. 2011-06-14 20:35  
When your doctor give you your Anti-Retroviral prescription, did your doctor tell you about these facts:
1. All anti-retroviral drugs are highly toxic to humans
2. Anti-retroviral drugs can by themselves cause AIDS
3. Pregnant women, infants, and children are much more vulnerable to the toxic effects of anti-retroviral drugs
[Anti-Retrovirals Can Cause AIDS]
This article was written in June 2000
and posted during the Internet Discussion
of the South African Presidential AIDS Advisory Panel
Comment edited on 2011-06-14 20:38:03
Comment #31 was deleted by an administrator on 2012-11-12 12:34

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