Yes. That is the first thing you should do. Remember that if diagnosed early, and if treatment is started at an appropriate time, HIV is no more an invariably fatal disease. In fact, it is now considered a medically manageable chronic disease (just like diabetes or hypertension).
However, it is essential that you approach a knowledgeable doctor. There are many quacks taking advantage of the plight of HIV-positive people. Many qualified physicians, too, may have little knowledge of HIV management and so patients are treated irrationally. This compromises the long-term benefits of treatment for HIV.
You can approach the government antiretroviral (ARV) centre in your vicinity or seek the help of an NGO of good repute.
When is it appropriate to start treatment for HIV? When does antiretroviral treatment (ART) start?
Infection with HIV leads to reduction in immunity, which is why the infected individual is prone to suffer from different opportunistic infections. This starts happening only when the immunity dips below a certain level.
White blood cells are important constituents of the human immune system. A specific variety of these cells, called CD4 cells, is the most important for this purpose. HIV infects these CD4 cells and thus their numbers gradually reduce. The average CD4 cell count in a healthy individual is above 800 cells/c mm. The symptoms start usually when the count dips below 200 CD4 cells/c mm.
In rich countries antiretroviral treatment – the most effective cocktail of drugs to combat the disease found so far - is started when CD4 counts reach below 350. The World Health Organisation suggests the level of 200 for poor-resource areas. Many HIV physicians in India consider 250 as a good cut-off level.
Sometimes, even with CD4 counts above 250, but with certain symptoms, physicians may consider starting treatment.
It takes on an average 8-10 years from the time of infection to this point. If diagnosed earlier, many patients are anxious to start treatment immediately. The anxiety is valid, but it would be prudent to leave the decision about starting treatment to your physician. To help this decision, ensure regular follow-up, including CD4 counts, even while not on treatment.
What exactly is the CD4 count? Why is it taken before starting treatment?
The CD4 count is the number of CD4 cells per unit of blood. CD4 count is taken immediately after the diagnosis to determine the baseline level, and then every six months. If the count is below the suggested critical level, then treatment should be started immediately. If it is above the critical level, the test count is repeated every six months to determine the timing for starting the treatment. Even after starting treatment, the count is repeated every six months to monitor response to it.
What should I do before I become eligible for ART?
If the CD4 count is above the critical level, or you show no symptoms, you are not yet eligible for antiretroviral treatment (ART). To keep healthy, eat well and eat hygienic (clean) food and drink boiled and cooled water. Avoid outside food and contaminated water. Regular but moderate exercise and sufficient rest are definitely helpful.
Excessive mental stress can also affect immunity, so, though knowing that you are infected is very stressful, accepting the fact and coping with it will keep you in better health. Use de-stressing activities of your choice such as meditation, yoga, or a hobby.
Once you become eligible for ART, but before you start it, get some essential routine investigations done: haemogram, liver function tests, renal function tests, chest x-ray, abdominal ultra-sonography and certain other tests as suggested by the physician.
Since ART is a life-long treatment, it is important to decide whether you are going to take the treatment regularly and adhere to the rigorous schedule. If diagnosed early, one gets time to plan and prepare for treatment related issues; this is the greatest advantage of early diagnosis.
I can't afford expensive tonics and vitamins. Can you suggest a cheap, nutritious diet for me?
There is no need for any expensive tonics and vitamins (for anybody!). Many health activists say that tonics are ‘tonics’ for the pharmaceutical companies and not for people.
There is also no specific ‘diet’. What we usually consider a ‘square diet’ is nutritious enough. Include more proteins in the form of egg white (hard boiled), and pulses (soybean), and ensure there is enough roughage (fibre) in the diet. Patients should avoid a high lipid diet as some of the medicines in ART may lead to increased lipid levels, which increases heart-related risks. Fruits and green vegetables provide essential vitamins.
One may add cheaper vitamin/mineral supplements which help cover deficiencies in the diet. Ask your doctor to suggest some inexpensive supplements.
How do ARTs work?
When the HIV virus infects the white blood cells called CD4 lymphocytes (that are important for our immunity) the number of the cells gradually diminishes. The symptoms of HIV/AIDS are due to the infections occurring as a result of the reduced immunity.
To restore the immunity we should stop this ‘killing’ of CD4 lymphocytes by the virus. Antiretroviral medicines reduce the numbers of viruses in the body. The objective is to reduce the ‘viral load’ to undetectable levels. As the virus diminishes, the CD4 cells start surviving longer, and as their numbers increase, the immunity improves, and so does the quality of life.
A simple analogy may explain this better. We may consider the development of AIDS as an impending train accident. When this accident would happen depends on two factors: the speed of the train and the distance of the train from the site of the accident. Now, the speed of the train is the ‘viral load’ and the distance from the site is the ‘CD4 count’. Higher the speed (viral load) or nearer the train to the site of the accident (low CD4 count), the earlier would be the accident. If we want to avoid the accident, we have to put on the brakes to reduce the speed. This is done by ART by reducing the viral load.
A few things must be remembered before going on ART:
- It is not a cure
- Once started it is a life long treatment
- It requires strict adherence to the dosage schedules
- It requires frequent monitoring for efficacy as well as side effects
- Non-adherence is going to lead to drug resistance and if the first line treatment fails, then second line drugs are much costlier.
What tests will I have to undergo when I am on ART?
While on ART you should be undergoing regular CD4 counts to ensure that the treatment is working.
Some physicians might suggest viral load testing to ensure that ART is suppressing the virus to undetectable levels.
Other tests to see that there are no untoward effects of the medicines include blood count, liver function and renal function tests, etc.
Some specialised tests may be needed in special situations (eg drug resistance testing if treatment failure is suspected).
The doctor told me I am resistant to the first-line drugs. What does this mean, and what can I do now?
If the virus undergoes structural changes called mutations, and as an effect learns to make the drugs ineffective, the viral load starts increasing and the CD4 count starts decreasing. When the CD4 count falls below a critical level, opportunistic infections make their reappearance. This is called treatment failure due to drug resistance.
It means that the treatment may need to be changed. There are still many possible options as a number of medicines are now available. These are called second-line drugs. However, these are definitely costlier. One needs to consult a good HIV physician to decide about the future course of action.
It must be remembered that the most important reason for treatment failure is non-adherence to the treatment. Unless you are likely to adhere to the treatment there is no point in shifting to second-line treatment.
I find the drugs make me feel ill. What can I do to tolerate the treatment?
Minor side-effects of the drugs slowly pass. If they are more severe, they may be suppressed by using other medicines. Very rarely are the side-effects so severe that they warrant changing the medication. Maintaining good health will help in tolerating the treatment.
What kinds of side-effects can I expect when on ART? What kind of side-effects should I notify the doctor about?
The side-effects of ART are generally like for many other medicines. Every drug/medicine can have a possible side-effect. Common, minor and immediate side-effects of ART are nausea, vomiting, diarrhoea, headaches, and minor skin rashes.
If there are severe skin rashes, high grade fever, incessant vomiting, uncontrolled loose motions, severe headaches, jaundice, severe pain in abdomen, breathlessness, severe anaemia, or bleeding disorders, then you must notify the doctor immediately.
As ART is going to be life long there are certain long-term side-effects such as redistribution of fat in the body leading to some disfigurement (fat is lost on the face and limbs and gets accumulated on the back of the neck and abdomen), severe pain in limbs due to neuropathies, increasing lipid and sugar levels due to metabolic changes. These must be monitored regularly.
(Compiled by Dr Vinay Kulkarni, a Pune-based physician specialising in treatment related to HIV/AIDS, and Dr Sanjeevani Kulkarni. They are both associated with Prayas Health, a Pune-based health organisation that provides information, counselling, training and care and support related to HIV/AIDS)
InfoChange News & Features, February 2008