The Jakarta Post , Jakarta | Thu, 02/08/2007 4:57 PM | Life
Anton Muhajir, Contributors, Denpasar
Thirty-four-year Agung has serious problems with his eyesight. His right eye is not functioning at all, while the vision in his left eye is filled with black dots. Agung works as a truck driver delivering gasoline from the Pesanggaran area of South Denpasar to places throughout the provincial capital of Bali.
For the last few months, Agung could no longer see things clearly. The father of one can see nothing but blurred images within a five-meter distance.
“”How can I drive this big vehicle? It would be very dangerous,”” complained Agung.
According to his doctor, Agung has cytomegalovirus (CMV), a infection that often attacks people with HIV/AIDS. Because he has HIV, Agung’s immune system is very vulnerable to viruses such as CMV. If not treated properly, the CMV will likely leave him half to totally blind.
Agung looked desperate. “”I cannot do anything but wait,”” he said in a husky voice.
Agung has undergone a series of tests, including a CD4 count to measure the strength of his immune system. In his latest test three months ago, Agung’s CD4 was only 19, compared to a normal level of between 500 and 1,600. Agung’s low CD4 made him a target for many diseases such as tuberculosis and various skin-related problems.
To prevent HIV from spreading widely in Agung’s body, the doctor encouraged him to take anti-retroviral (ARV) medicine. Agung has been taking ARV since three years ago, when he was first diagnosed with HIV.
Taking ARV requires discipline on the part of the patient and support from doctors, counselors and families. The medicine must be taken on a very tight schedule.
“”A patient should follow the precise times and dosages for all medications; otherwise they will not work effectively,”” explained Yusuf Rey Noldy, a dedicated volunteer who helps a number of people with HIV/AIDS in Bali attend to their health.
“”If a patient skips his or her medication schedule, the virus will get more resistant to drugs; this is a very serious matter that must be taken into account. He or she has to be very punctual and disciplined in taking the medicines,”” Noldy said.
Agung once failed to take his ARV. “”I did not mean to. I had turned on my mobile phone alarm, but I did not realize it was my medicine time,”” Agung said.
Agung is not the only one trying to stick to a tough ARV schedule. Another patient, Frans, 30, became infected with HIV in 2003 by injecting drugs.
“”I’ve been taking ARV for four years, I don’t see any changes,”” Frans said.
According to the latest test, Frans’ CD4 has dropped to 117 from the previous 172. “”The main point of taking ARV is to increase my CD4; the result was disappointing,”” he said.
The success of ARV therapy is also measured by what is called the patient’s viral load, or the amount of virus in the blood. A recent test showed that Frans’ viral load had dropped from 750,000 copies to 85,000 copies. But it has increased again to 120,000 in the last few weeks.
Frans felt sure the virus was becoming resistant. “”I admit that I happened to skip my medicine for several hours,”” he said.
Frans is fortunate; he has never had serious opportunistic infections. “”Just light flu and cough,”” he said.
Noldy, a counselor from Hatihati Foundation, reminds patients and families of the danger of taking medicines irregularly.
A lack of specialized equipment hampers Indonesia’s ability to track the problem. One way to tell whether the virus has become resistant because of an irregular medication schedule is by doing a resistance test. “”Unluckily, there are no hospitals in Indonesia which have such a facility,”” Noldy said.
Some patients send their blood to an Australian laboratory. The cost for each test is Rp 4 million (around US$440)
Virus resistance threatens the lives of some 4,000 people with HIV/AIDS in Bali, according to data from the Bali Province HIV/AIDS Commission. “”It is the tip of the iceberg. There are many more people with HIV/AIDS experiencing virus resistance who have gone undetected,”” Noldy said.
The commission said several people with HIV/AIDS in Bali had deliberately stopped their ARV therapies for various reasons.
Ariawan, 41, decided to stop taking ARV because he disliked its side effects on his body, including drop in his hemoglobin.
“”This is my decision and I am ready to accept the consequences,”” Ariawan said.
The numbers from Denpasar’s Sanglah Hospital are discouraging. Through January 2007, some 23 people with HIV/AIDS treated at the hospital have stopped their ARV therapies. There are 19 others who have failed to show up at the hospital.
People like Agung and Frans are lucky to have support from their families and friends to continue their ARV therapies. “”I just want to be with my family longer and show my friends that taking ARV is important,”” Agung said.
Dr. Tuti Parwati, coordinator of care, support and treatment for Bali’s HIV/AIDS Commission, said she is working with the National Commission to provide funds and facilities to help people get HIV resistance tests.
“”The tests are still very expensive and we hope to collaborate with several organizations and donors to get the facilities as soon as possible,”” Tuti said.