Taking meds is never easy.
We are blessed in India to have basic Anti-Retroviral drugs being given free by the government.
The basic combination of three drugs - given in a fixed-dose tablet to be taken twice a day is about the most cost-effective and easy to HIV drug therapy there is.
There is a whole universe of different drugs that can be taken to try and keep the levels of HIV at undetectable levels (the basic goal of Anti-Retroviral Therapy). An HIV positive friend of ours from the US told us a few years ago about the 12 different pills he was taking as part of his ART.
Recently the government decided to switch one of its basic drugs. Instead of a combination using nevirapine - the National ART programme is now using a combination that uses efavirenz.
On the face of it - this is good. The programme had till now been using the nevirapine based regime because it is considerably cheaper than one using efavirenz.
There is one serious problem though - patients using efavirenz often have strong psychiatric side-effects. Vivid dreams and nightmares. Things like that. The good news is that these side-effects go away after a week or two. At JSK we always take plenty of time to help our friends on effivarenz to know about this. We encourage them to take their dose at night so that it will affect them less. We encourage them to keep going - even if they don't feel like it. The meds make a huge difference. It is worth the short-term problems for long-term gain. We have seen the remarkable changes that ART has brought to the lives of our dear friends with HIV.
But that is not what our Positive Friends are hearing at the govt. clinics. Many are afraid. Suddenly they have been given a new drug. Some have stopped taking the drug. Others are taking part of the dosage. We have talked with a number of HIV positive friends who are confused - and have expressed this to the officer in charge of the ART clinic in Thane.
The AIDS message boards on the internet have also been busy. The one that we get - AIDS India - had a string of messages from across the country. This led the director of the ART programme in India - Dr. B.B. Rewari to post this as part of his response:
This substitution has been done over years inside the program and world over
especially when the patients are on rifampicin based ATT regimen. It is also
known that few patients are likely to develop Efavirenz based side effects
(which is true regarding any drug), which becomes even more uncommon when
patient has already been on Nevirapine.
Usually these are transient and disappear in 1-2 weeks time. All the
ART Medical officers and counselors were instructed regarding the need for
counseling on these issues before change.
We are again issuing further instruction in this regard to all ART centers to
explain these possible side effects to patient before switching and advise them
to take Efavirenz at bed time.
Nothing wrong in anything the good doctor has written. Except that at the ground-level we have yet to meet one of our HIV Positive Friends who has had the switch properly explained to them at the govt. ART Centre. And the fact of the matter is that a person takes their meds only if they trust them. Period.
How many of our Positive Friends who are on govt. ART are actually taking the meds now? And if so - how consistently?
We are hoping to play a little bit of a larger role in partnering with the govt. ART centre in Thane to provide ART drugs to people with HIV in our city. We have the capacity and the experience to do it - and have requested the govt. to make us a link ART-centre. The advantage that Jeevan Sahara brings to the table is that we have staff and volunteers who follow folk up in their homes - and work on adherence issues in practical ways - something that the current govt. clinic with its 6000 patients on ART does not have the luxury of doing.
We are still waiting. Hopefully we can post good news about a link-ART centre soon!
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