THERE have been times when Yunna skipped taking his antiretroviral (ARV) medications in a desperate attempt to make them last longer. He knows non-compliance to his drug regimen is counterproductive but the high cost of the drugs that are keeping him healthy weighs heavily on him.
"When I first started taking the drugs in 2001, it cost RM1,450 per month," said Yunna, a contract worker. "My income is not steady. Payments are often delayed, and I never know if I will have the money for my next dosage."
When funds are short, his sister chips in to help, but Yunna feels embarrassed whenever he has to ask for assistance.
"But I have no choice," said Yunna, who was diagnosed HIV+ in 1991, and needs the medicine for life. He kept himself healthy for 10 years by exercising and keeping fit, but had to go on ARV treatment three years ago when his CD4 count dropped below 200.
(CD4 is the level of white blood cells in the immune system undamaged by the human immunodeficiency virus (HIV). People without HIV should have between 500 and 1200 CD4. Doctors usually recommend ARV treatment when the CD4 count dips to below 200.)
Although costly, the ARV drugs are Yunna's lifeline to a better quality of life.
(HIV is a virus that attacks and weakens the body's disease-fighting system, causing Acquired Immune Deficiency Syndrome (AIDS). A person who has been infected by HIV is termed as being HIV positive (HIV+) but it does not mean he has AIDS. AIDS refers to a group of illnesses that occur in a HIV+ person as a result of a weakened immune system. The most common of these illnesses are opportunistic infections like pneumonia, tuberculosis, thrush and a number of skin diseases. The illnesses may occur many years after a person is infected.)
ARV treatment or HAART (Highly Active Antiretroviral Therapy) was first introduced in 1996, and has been shown to suppress the replication of the virus. Patients on HAART usually take a combination of three drugs (see chart on ARV medication). HAART has been shown to keep the HIV viral load low, sometimes even to undetectable level. The lower the viral load of the individual, the lesser the risk of transmitting HIV to others.
ARV has drastically changed the lives of people with HIV, with those who have access to it being able to lead healthy lives.
But this monumental development meant little to Malaysians then due to the high cost of the drugs. In 1997, only a handful could go on the treatment even with the government sponsoring one of the drugs needed, zidovudine (AZT), as the cost of the other two came up to about RM1,500. For patients who did not respond to AZT in the combination therapy, the cost of treatment was about RM2,100.
Without the drugs, the average survival period from the onset of AIDS is between six months and a year.
Apart from saving lives, access to treatment is important because it could encourage more people to go for testing, which could then reduce the risk of infecting others unknowingly.
Dr Christopher Lee, who treats HIV/AIDS patients at Hospital Kuala Lumpur, estimates that only about 6,000 of the identified 50,000 Malaysians with HIV have actually gone for follow-up treatment in government hospitals. Only 1,500 of the estimated 4,000 HIV+ people who are on the verge of developing full-blown AIDS are currently receiving treatment.
Malaysia has one of the best HIV/AIDS treatment programmes in the region, but fear of discrimination and lack of awareness are blocking access to these services. For instance, treatment for opportunistic infections such as tuberculosis is free in government hospitals.
The Government also provides one ARV drug free for those treated in government hospitals, subject to certain conditions. Free HAART is given to patients infected via contaminated blood/ blood products, children, health care workers (occupational exposure), civil servants and pregnant women found infected under the Health Ministry's mother-to-child-transmission surveillance programme.
Still, the ARV drugs remains unaffordable to most people with HIV.
"I still remember when Dr (Christopher) Lee proposed that MAF (Malaysian AIDS Foundation) set up a drug assistance scheme to help people with HIV buy ARV drugs in 1998.
He was responding to his patients' inability to access the drugs they need, and was very passionate that we must do something to help," said MAF executive director Indra Kumari Nadchatram. (MAF is the fundraising arm of the Malaysian AIDS Council.)
"We were apprehensive about starting the scheme because the drugs were expensive. But we went ahead with 30 patients, and the scheme will go into its sixth year this July."
The scheme is a model of partnership between the Government, an NGO and people with HIV. The Government provides one ARV drug free, the patient buys the second, and MAF sponsors the third. MAF also sponsors three viral load tests a year for patients under the scheme to monitor their response to treatment.
In recent years, access to treatment has become a core concern among AIDS activists. Globally, there has been intense pressure on pharmaceutical companies to lower their drug prices, as well as challenges to intellectual and trade laws that thwart access to these life-sustaining medicines.
In Malaysia, government and non-governmental organisations like the MAF have also been negotiating with pharmaceutical companies to reduce the price of ARV drugs.
The most significant development occurred in June 2001 when pharmaceutical companies such as Boehringer Ingelheim (BI), Merck Sharp & Dohme (MSD), and Bristol Myers Squibb (BMS) announced price cuts for their ARV drugs supplied to the government and MAF. They later also extended the new prices to individual buyers.
Glaxo Smith Kline (GSK) has just announced price reductions for ARV drugs such as AZT, 3TC and combivir to the Government and MAF.
With the price reductions in 2001, the cost of treatment for patients like Yunna went down to between RM800 and RM1,000. "Still expensive, but better," said Yunna.
"Based on our feedback from doctors and caregivers (including people with HIV/AIDS), a significant proportion of patients in Malaysia are either unemployed or earn RM1,000 and below per month," said Indra, citing data collected via the drug assistance scheme and the Paediatric AIDS Fund.
"Data show that there seems to be a growing number of HIV+ widows who have very basic education and minimal skills to earn enough to pay for their HIV treatment on top of living expenses (rent, food, children's education). Many opt to forego treatment so that money is saved for their children's future when they die."
Another measure that the Government could take is to use the clauses under Section 84 of the Patents (Amendments) Act 2000 to bring in generic ARV drugs that are cheaper, or manufacture drugs not patented locally.
One late evening, an HIV patient walked into Dr Lee's clinic just to share with him his joy at being able to see his daughter start primary school. He said he never thought he'd live to see that day, but treatment had given him a new lease of life.
He was fortunate he could afford the treatment.
The vast majority of Malaysians with HIV still have no access to treatment.
For more information on treatment for HIV/AIDS, call the AIDS officers in government hospitals, or the Malaysian AIDS Council at 03-4045-1033 or fax 03-4042-6133.