In 1998, a PLWHA would have to pay US$ 421 a month for two additional ARVs to undergo triple therapy. This cost could increase to US$ 553 a month should the patient not respond to AZT in the regimen and be required to purchase all three ARVs. Treatment accessibility at US$ 5,000 to US$ 6,600 a year was clearly beyond the reach of many HIV-positive Malaysians who earned on average about US$ 3,120 per year. This cost would not include other expenses that may be incurred by the patient such as undergoing viral load tests to monitor response to the therapy or treatment of opportunistic infections and hospitalisation.

Cost of ARVs is one of the main factors that determine how and where PLWHA access treatment. Many have resorted to treatments with unfounded claims of being able to cure HIV or based on unproven or minimally established clinical data, primarily because these treatments are less expensive than antiretroviral treatment. Some people are also known to self-administer their treatment without supervision of a doctor, using generic ARVs accessed from abroad through friends. At the same time, people on supervised antiretroviral therapy are prepared to travel long distances to seek treatment in hospitals located away from their towns and cities for fear of discrimination should their status be discovered locally.

The Drug Assistance Scheme

In response to the situation in Malaysia, MAF initiated its "People Living with HIV/AIDS Drug Assistance Scheme" to improve drugs affordability using a partnership framework with the responsibility shared across the stakeholders:

Drugs accessibility has generally improved in the years since MAF's Drug Scheme was introduced, due to the government's commitment and the role of several pharmaceutical companies in the country who have reduced the price of their ARVs as well as introduced new ARV formulations that help enhance treatment compliance. The government today provides five categories of PLWHA with free therapy: 1) HIV-infected children; 2) persons who acquire infection through contaminated blood and blood products in Malaysia; 3) health-care workers infected through occupational exposure in Malaysia; 4) women who are detected HIV-positive through the antenatal surveillance programme of the Ministry of Health; and 5) civil servants. All other PLWHA managed at Ministry of Health hospitals are provided with one ARV only. This could be AZT or one of the other seven selected medicines.

Beneficiaries

The programme provides sponsorship based on established medical and socio-economic criteria developed by a team of doctors. The socio-economic criteria comprise: being a Malaysian citizen above the age of 13 (HIV-positive children in Malaysia receive free combination therapy); and having a monthly household income of US$ 526 net and below.

Since the start of the programme, the average cost for triple therapy (ARVs only) has reduced by about 40% to US$ 315 per month. The total cost for treatment including CD4 and viral load tests is USD 338 per month. The government subsidises slightly more than a third of this cost for all patients who meet the National Treatment Guidelines. Should the patient also be a beneficiary of the MAF Scheme, the cost is further reduced by approximately 70%. Consequently, programme participants pay about US$ 100 per month.

Beginning small in 1998 with support to 30 poor Malaysians, the programme has since increased its support to benefit 100 Malaysians at any one time. All applications to the scheme, which must be submitted by the patients' doctor, are provided with code names to maintain confidentiality. A lottery system is employed for selection as applications outnumber spaces available. Unsuccessful applicants are maintained on a waiting list and accepted in chronological order as and when spaces are made available.

Sustainability – financing the programme

A seed grant from the Association of Ministers Wives, Malaysia helped initiate the programme. Sustainability in the years since has been dependent on fundraising activities, donations and investments, all of which are carried out in Malaysia. In addition, MAF developed a policy whereby twenty percent of all non-designated donations are channelled to support the programme. The global call for ARV price reductions enabled the government and civil society the opportunity to negotiate for more affordable ARV prices in Malaysia. Several pharmaceutical companies responded to these negotiations favourably by reducing their prices by 20-60%.

Achievements

Seventy percent of people who started with CD4 counts of below 200 today have counts of 300 and above, many with undetectable viral load levels. Data collected over the years also indicate that recipients have been able to source for one ARV on their own, as treatment has been made more accessible with 70% of its costs being sponsored collectively by the government and MAF. Experience has also demonstrated that patient buy-in has ensured a higher level of adherence to the regimen.

This programme has provided MAF with a platform and a legitimate voice to address its concerns and to get more involved in HIV treatment efforts in Malaysia. Amongst others, the scheme has provided us opportunities to advocate on HIV treatment issues to the government as well as with pharmaceutical and diagnostic companies, including negotiating ARV price reductions. More importantly, the programme has enabled better accessibility to drugs for several Malaysians, and demonstrated the value and benefits of treatment, thus encouraging HIV testing. MAF's evaluation in 2001 also revealed that recipients were heartened by the progress of their health and were encouraging their peers to seek treatment as well.

Moving forward

While some benefits have been achieved to date in Malaysia, more should be done to improve treatment accessibility. There are some 1500 people currently on ART in Malaysia, of whom 106 are able to access ARVs as a result of the Scheme. The others receive only one ARV from the government. MAF estimates that another 3000 people would need antiretroviral therapy now and are not on it, either because they cannot afford to buy the other two ARVs on their own or because they are not visiting their doctors. Over 70% of Malaysia's reported HIV/AIDS cases are amongst injecting drug users, who have very poor track records with clinical follow-up. Amongst others, continued efforts in lowering the costs of drugs; expanding and improving ARV delivery to include more diagnostic facilities in the country as well as providing structures that will ensure better compliancy to treatment regimens will be necessary.

At the national level, the Malaysian government is commended for its continued commitment to improving treatment affordability by negotiating for lower prices for branded drugs and exploring avenues to introduce generic ARVs into the local market. We hope this will encourage more PLWHA to access ARV treatment rather than treatments with little clinical data on efficacy. At the same time, prevention and awareness efforts that include addressing stigma and discrimination are being scaled up by MAF's parent organization, the Malaysian AIDS Council (MAC) in collaboration with MAC Partner Affiliates.

At the international level, international agencies and developed countries need to continue their pressure on the pharmaceutical industry to further lower ARV prices while introducing new ARVs at affordable prices. Policies as well as frameworks are also needed to enable governments committed to delivering treatment including the ability to introduce generic ARVs without fear of negative repercussions.

Our ultimate aim is to work towards the abolishment of this Scheme where all PLWHA are able to access free treatment in Malaysia.

1. HIV prevalence was 0.25% in 2002. Though this appears to be low, infection rates have risen substantially. Malaysia recorded its highest number of HIV cases (7,218) in 2002 alone. Heterosexual transmission increased by 46% (source: Ministry of Health Malaysia, statistics December 2002).