TUMUSIIME: Tests before and during therapy are obviously the way to know for sure 'where you are going' in the course of therapy. However, the experts need to come up universally and say that another option for the developing world could be syndromic monitoring for those who can only afford ARVs but can't afford the tests. Take the example of a father of four children, who is living with the virus, who said: "I am the bread winner at home. If I don't take the drugs I may die, then what will happen to these innocent ones whose mother passed away two years ago? I have no money for the tests, but I can sacrifice for the drugs". Such people are living in a world of uncertainty.
CONRADIE: We, as Africans seem, to be hamstrung by the developed world's paradigm of antiretroviral therapy. I feel that many problems are created by the fact that if we cannot have everything, i.e. access to every type of safety monitoring, then we can have nothing at all. Most of my patients will accept that if they can have treatment with reasonable safety the risks of the treatment are worth taking. When I see a woman who has three children under the age of ten, and all she wants is to see them into late teenagerhood, and I say that she cannot have lifesaving treatment because I cannot do three-monthly viral load tests that are the same price as her monthly salary ... it becomes more than a little ridiculous.
PRABHU: The positive effects of treatment are very evident clinically, when patients stop falling sick and doing well, in contrast to the others. CD4 counts and viral loads in this context impose an additional burden economically to the already stretched purse. So, we perform these measurements once in 6 months to a year, more often if patients are on ARV medication and still deteriorating clinically. Otherwise, we may even defer doing these tests as long as patients continue to take their medications and improve clinically. Routine and repetitive monitoring only feeds the labs, it is much simpler to check clinical parameters.
Regular clinical monitoring as opposed to laboratory monitoring is stressed. Certain "HIV physicians" regularly make their patients do CD4 counts/viral loads as if they were taking a bus ride into town, even if the patients are asymptomatic. A fear psychosis is unduly imbibed into patient's minds as a result. "Doctor, my CD4 count dropped 50/60 compared to last year&"
Some patients on ARV expect their drugs to work miracles and feel upset that after spending so much of money on drugs and testing for viral loads and CD4 counts, they are still falling sick and not becoming all right. Add to this the battery of tests that may be needed to pick up complications of therapy or to diagnose opportunistic infections and it is a very expensive business indeed! In fact we have come across instances where the patient's relatives fight amongst themselves, as to who has to bear the expenses and very often take the patient, who is caught in the middle, to a [poorly resourced] government hospital and let the system run its natural course.
VAN OSCH: From the start, one has to emphasize open communication, where one indicates that the only way to effectively assist the patient is when they feel free to ask any question, but also tell of any problem they encounter with the medicines/treatments, and indicate whichever complementary treatments/supplements/herbs they take or intend to try. What is important at the end of the day, is that as physician you feel comfortable that the treatment you suggest is effective, but the patient should also feel comfortable and in power (not confused) with what is going on.
I have felt it of utmost importance, to "individualize" the monitoring and treatment along general guidelines, instead of treating according to strict protocols. It seems as if many doctors only feel comfortable when they can work along protocols and are scared to miss out on something. Obviously, protocols help in the beginning to set the guidelines for yourself, but once you gain some confidence and see how well people can do with simple adherence tricks, listening and support, one can safely reduce monitoring frequency with most patients without jeopardizing their success for the future.
Still, with support for their adherence strategies, many continue to do very well for extended periods of time, which means that in the beginning, and if clinical parameters indicate I would monitor their CD4 and Viral Load every 2 - 3 months, but once they are doing well tend to go to every 6 - 9 months. I do the general blood tests when clinical symptoms indicate the need but usually every 6 - 9 months.
I see all patients every month and that way we can keep a close eye on their clinical parameters and problems with adherence. Social and psychological problems have major effect on adherence and require special attention.
Obviously in resource limited settings one has to make do with what one has. Some patients have the means to do more frequent monitoring, and only feel comfortable when they do this exactly according to the protocols. Most however do just as well with less frequent expensive blood testing, once there is an open relationship with the doctor, regular (monthly) clinical monitoring, and a strong emphasis on and support for adherence issues.
It is indeed not always necessary (or in the long term may be harmful) to change a treatment when tests seem worse than before. Monitoring means evaluating the disease in a patient, not jumping to quick conclusions which will make the treatment erratic and confusing. In the long term patients might lose out on viable options thrown overboard based on quick decisions.
In the end it is important to sit and listen to your patient, plus give guiding advice, instead of doing magical blood-tests all the time, setting you and your patient up to treating lab-results instead of the person living with HIV/AIDS.