People living with HIV could see the time when a cure is found for the illness, as long as they stick to their strict regimen of medication.
NEARLY 20 years after being diagnosed with HIV, Andrew Tan is not only still alive but he is also kicking back with a vengeance. And he is looking forward to growing old.
“It hit me when I realised that some of the medication my mother was taking for her old age illnesses were the same as mine. There were even times when we shared medicine because hers had run out,” he says.
Tan, like many other Malaysians living with HIV/AIDS, has been through a roller coaster regimen of medication ever since he had to take them in 1995.
Besides having a full-time job, Tan is also president of the myPlus, Malaysian Positive Network, an organisation run by HIV positive people for those who are positive, and takes on training and speaking gigs.
The “pill burden”, as he calls it, involved taking up to 20 tablets a day at specific hours.
The cost of such medication was also high and could go up to RM2,000 monthly.
He rattles off a list of the pills he had to take, which included two tablets (called Didanosine or ddl) the size of 50 sen coins. He says he dissolved these in water and took them before meals.
“There was this time when we were at the International AIDS Conference in Bangkok and there was no water available. We had to buy bottled water to dissolve the pills. Half of it was dissolved while the other part was stuck to the bottom of the bottle. We had to keep on adding water to make sure we had the full dose,” he recalls.
“Your whole life revolved around the medication. You had to constantly remember the timing and there was no chance to forget the fact that I am HIV positive. The burden was always there.”
As the years passed, Tan moved on to different regimens and because of medical advances, it also meant popping less pills to directly control the virus.
He is now on three ARV (anti-retroviral) combinations (two of which are free from the Health Ministry and another which costs him RM180 monthly).
On the downside, his “diet” of pills to keep other diseases at bay has increased, with the “menu” now consisting of Fenofibrate to manage triglycerides, Perindopril Erbumine (ACE inhibitor); Pravastatin to reduce lipids; Amlodipine for high blood pressure; and Aspirin to thin the blood.
Ultimately, this causes people living with HIV/AIDS (PLHIV) who are on medication to age faster.
“The aging is accelerated by about 20 years, I am told,” says Tan who is in his 50s. It also has complications on his liver and kidneys.
A transient ischemic attack (often referred to as a “mini stroke”) two years ago saw him making changes to his lifestyle, although, he laughingly says, if one were to look up the definition of “couch potato” in the dictionary, his photo would probably be there.
His diet of char siew and siew yoke rice five times a week has been cut down to rice with a combination of vegetables, and he has also taken to exercising such as swimming.
He laments the fact that while the life span has been extended for PLHIV, there were other issues that still make life an uphill battle for them. These include dealing with side effects such as peripheral neuropathy (damage to the peripheral nervous system), lipodystrophy (abnormal central fat accumulation), and lipoatrophy (localised loss of fat tissue).
Tan has suffered from severe anaemia, kidney stones and lipoatrophy. “With the loss of body fat, you end up looking shrivelled and that does not help your self-confidence,” he says.
“Then there is the S and D (Stigma and discrimination). We are still viewed differently and some just cannot resolve it.”
Shift in the goal post
Currently there are two scenarios that doctors in Malaysia are dealing with.
The first, says Sungai Buloh Hospital head of medicine and infectious diseases control Datuk Dr Christopher Lee, are those who have been on treatment for years and enjoy a longer life span.
The other is having patients who are exposed to the disease later in life.
“We are moving towards treating an older population. There are now more patients in their 40s and 50s compared to those days when they were in their 20s or 30s,” he says.
One reason for this is that access to HIV medication has increased and there are also better drugs.
But, says Dr Lee, this aging population of patients also runs a risk of developing chronic diseases because of HIV, more so if they are on treatment.
Among the illnesses they can develop are diabetes, heart disease, osteoporosis and high cholesterol.
“So what we have now is HIV medication that controls the virus but these have side effects,” he explains. “Those days we were happy if patients managed to live so there was no talk of being on a diet or exercise. But now they are growing old so infectious disease physicians have the added responsibility of looking out for these co-morbidities.”
This is especially so if the patient has risk factors such as a family history of heart disease or if they are smokers.
“The workload is heavier but we can handle it although there are some cases which have to be referred to the cardiologists or endocrinologists,” he says.
Most patients living with the virus here have been under treatment for about a decade and the biggest influx of patients was between 2005 and 2006, Dr Lee says.
“Nearly 80% of our patients are on treatment,” he adds.
Dr Lee says that despite the side effects of some medication, it was still imperative for patients to continue taking their prescriptions.
Most of these side effects can be controlled, he says, adding that newer classes of antiretroviral agents, such as intergrase inhibitors, cause less side effects.
And he hopes these would be readily available at a cheaper price in Malaysia.
When it comes to the S and D words, Dr Lee observes that there has been improvements over the years. “There is less fear and physicians are more comfortable now,” he says, recalling that in the “early days” it was difficult to sometimes obtain a simple procedure such as a lymph node biopsy.
Patients are also given psychiatric referral if necessary, although most eventually learn to cope with counselling and moral support, adds Dr Lee.
Looking to the future
Dr Daniel Douek, chief of Human Immunology Section at the National Institutes of Health, Vaccine Research Centre, is adamant that there is no excuse for those living with HIV not to care.
“For some, it’s one pill a day,” he says, adding that side effects have also lessened in the past 30 years.
He stresses that a normal life is possible and advises them to watch their diet, maintain reasonable body weight and to stay on treatment.
“People are not dying. They are living now.”
He explains that accelerated aging is due to their bodies being systematically inflamed and have undergone an “insult” to their immune system.
Dr Douek adds that it is important for patients to get on treatment as early as possible to improve their chances of survival.
World Health Organisation guidelines unveiled recently at the IAS 2013 conference in Kuala Lumpur recommends that drugs to be started as soon as a patient’s CD4 counts falls below 500.
It also recommends for some groups, such as those with hepatitis B or tuberculosis, children below five years, those who have regular sex partners who are HIV negative and women who are pregnant or breast-feeding, to start treatment immediately upon a positive diagnosis.
Dr Steven Deeks, professor of medicine in residence at the University of California, San Francisco and a faculty member in the Positive Health Program (AIDS Program) at San Francisco General Hospital, in his keynote address at IAS 2013, said the disease was one that requires treatment lasting many decades.
It also comes with a host of new problems including persistent inflammation or immune dysfunction, clinical aging, excess co-morbidity and an overburdened health care system that is not alerted or resourced to provide chronic care.
Research, he said, also shows that more than 50% of infected adults aged between 55 and 60 had two or more co-morbidities, which was higher than uninfected adults more than a decade older.
Dr Deeks implored his patients who are in their 40s or 50s to be as healthy as they can by staying on treatment and living healthy lifestyles, as the cure that is strongly being pursued could yet be found within the next couple of decades.