What Next After Testing Positive?

Here’s a mail that I had written sometime back that answers exactly your questions. I had also posted on the lists, but I really need to find the time to put stuff like this on the website. Pass it on to your friend and ask him to go through it and see what questions he has. If he’s willing he can mail me directly or can send through you.

I would still recommend he considers the counsellors at Humsafar. They really do have decent confidentiality procedures and the fact that they will be sensitised to gay men and HIV is in itself worth a huge deal. There is seriously bad shit that has come from private doctors who are not sensitised to this issue at all and give such terrible advice that in some cases they have clearly hastened the entirely unnecessaary deaths of their patients.

If he’s not willing to consider Humsafar, or Sion Hospital (the Skin/OPD department which is probably the most sensitised place on HIV and gays other than Humsafar) there is a third option which is typical of our Indian system – the doctors from Sion Hospital who are also doing privte practice. Dr.Hemangi Jerajani, who was running the Sion programme, is now consulting somewhere in Versova, I think, and she has helped a number of gay men who have gone to her about this.

Cost levels will vary for all this. Humsafar/Sion is almost free, Dr.Hema will be a bit more and the private guys, which are the worst option, will be the most expensive! There are a few private guys who are good and worth going to, like Dr.Joshi who I’ve dealt with a bit, but it is almost impossible getting an apointment with him (and definitely impossible for the next few months since he’s on some big project, he had to turn away a guy I sent to him recently).

The cost he cannot skip – I mention it below, but am re-emphasising it – is the cost of regular testing for CD4, CD8, viral load. In the long term as the virus stabilises he could possibly do it less often, but in the short term he needs to do it regularly.

Here’s the mail I had sent:

Now that you have tested positive you will need to find at least three kinds of support:

1) A counsellor with some understanding of gay/bi issues and HIV who can help you with the consequences of this for you and your family. Whether you are out or not, or have a supportive environment or not, will all affect your interaction with HIV, and it is best to be prepared for both practical and emotional issues, and a counselor can help with these.

2) A really up to date and knowledgeable HIV/AIDS specialist. This is harder to find than one might imagine despite the large organisational structure for HIV/AIDS. Most private doctors, quite frankly, know nothing about it and the ones with most experiences are in public hospitals. But these are not the easiest of places to visit and in any case their focus is, rightly, on mass treatment, and not quite geared towards someone who is middle class and able to bear some of the expenses of the treatment. In other words, the government/NGO system focuses, as it must, on large scale, free treatment and cannot be adjusted that much to each individual patient. But ideally with a disease like HIV, where each person’s prognosis can be very different, this individualised treatment is needed and if you are in a position to get it, you must.

3) A physician who will treat your regular illnesses with some knowledge of your HIV status. While the physician should treat your illnesses for what they are, it is possible that it might be best if it is known that HIV is a background factor, so you need a doctor with some knowledge of this. This may not be that critical at the moment, since you are most likely quite healthy now and will be for a while, and this will not be an issue. At some point in time though it might, but hopefully by then you will be better networked with the HIV support scene. Getting in touch with a HIV support group is also a good option to consider at a later point.

OK, but for now, you need to relax. What’s happened isn’t wonderful, but its not the end of the world. The problem with HIV is that it comes with all the stigma and fear and in your case this will be multiplied by concerns about your family. But you need to remind yourself that:

a) It is just a disease, it is not a moral judgment on you.

b) It is not fiercely contagious. The saving thing about HIV is, in fact, that it is a virus that is quite hard to get. You need direct contact of certain kinds of bodily fluid – blood, semen, precum (it is there in saliva but at such low levels you don’t need to get worked up about it). The virus also dies quite fast outside the body. So you are not risking infecting people by just being around them. (I need hardly say that you have to be careful about sexual partners and if you have had unprotected sex with anyone recently then you might need to consider telling those partners).

c) You can have a quite normal lifespan. One way to look at it is that you have acquired a medical condition like diabetes. This can be serious and cause all kinds of complications if it is not treated, but it is quite possible to treat it and build that treatment into your life.

At some point you will probably need to start taking the drugs and yes, in the past the side effects were not great. But newer treatment regimens have reduced this to a large extent and if you find a good specialist you should be able to increase the chance that you will get a fairly problem free treatment regimen.

As to when you will have to start treatment that is harder to say and it is why a specialist is needed. Please don’t listen when doctors says, as they often do, that you only need to start starting treatment when your CD4s cells drop below 200. This is the norm set by the government in connection to administration of free medicines, and it is no surprise that they have chosen a level that makes optimum sense for them (in terms of total cost) as well as the patient.

But you don’t have to be bound by this and can decide what will be the optimum point for you. The tendency in the West now is to start treatment much earlier – specialists may recommend starting when CD4s fall below 350, or if they show a rapid decline.

Please don’t believe one myth that floats around which is that after starting treatment you only have that many years to live. Such claims are based on mass studies, with people who often don’t have access to healthy food and living conditions, and this should not apply to you. I hope I don’t need to say that you need to focus very strongly on maintaining your health in general. (Alternate healing practices like yoga can’t cure HIV, but they can help here, in improving your general health and reducing stress).

What you will have to start doing now and this unfortunately does involve real costs, far more than that of the drugs themselves, is to start monitoring yourself more often. This involves going to a good path lab – I think its best to stick to the large national chains like Metropolis if that’s there where you are – and doing a HIV package which will show two things: 1) virus levels and 2) CD4 levels (and other white blood cells). These will vary inversely, but its not easy analysing them – virus levels in particular can vary alarmingly without it meaning much. This is where the specialist is vital.

The cost of the testing package is around Rs4500 and this is an expense you HAVE to find money for, at least in this initial phase as your body gets used to the presence of the virus in it. I would suggest you do tests every 2-3 months for the first year and then, as you get a sense of how the virus is settling down in your body you can do them less, but once every six months is a minimum. The cost of these tests is the real financial blow with HIV and while there has been some work being done on bringing them down or providing free tests at government hospitals, this is all still a problem.

All this is a lot for you to process so please take your time to go through them. Please consider seeing a counsellor to help you deal with personal issues, as well as a good doctor.  You will be surprised, once these are in places and you are taking good care of your health and being aware of, but not obsessing, about your condition, how routine it can come to seem. Never entirely routine, of course, but manageable and certainly no reason not lead a normal life.

all the best

written by Vikram