World Disclosure Day

Lesego Motsepe disclosed her HIV status on 1 december. She has been living with the virus for 13 years.
What a wonderful and courageous statement to make.

what a difference could be made to the world, if every 1 December, the world could shed a further layer of stigma by disclosing hiv negative and positive status. I would like to see us move to a society where the shame is in not knowing one's status, the plus or minus sign after HIV could become irrelevant as they both indicate self-awareness, a willingness to take responsibility for health, and a respect for other human beings that the shield of ignorance cannot convey.

Bear with me as I walk you through an image.

Imagine a photo of 20 people . There is probably one person in that crowd that looks ill. This is probably the 'typical AIDS appearance' that we associate with as the face of AIDS. What most people do, when looking at the other 19 healthy and 'normal' people, is assume that they are HIV negative.







What we need to move to is a scenario where one views the other 19 people and simply thinks "hmmm... healthy people, could be negative, could be positive, who knows." But, for that perception shift to happen we need some of those healthy, vital and well people to step up and say "hey, guess what? I'm positive, living well, looking forward to my future, and completely normal." Only then, will we see the focus move away from the poster stereotype of "AIDS" and all the connotations the word has, to a sense of normality and 'indifference'. It's funny, but that is exactly the word I would like to see us use to describe people who are negative or positive: indifferent.

Prepare for death but Plan to Live

The last few weeks have brought some interesting insights into the working psyche of some of my patients. Two particular women specifically. I want to tell you about Betty.

Betty was diagnosed HIV positive in 2001, in what is fair to call, a different era of HIV. In South Africa, this was a time well before Antiretroviral treatment became available, in a time when Minister Tshabalala Msimang and President Mbeki were openly dismissive of AIDS. At this time, Betty found out that her future plans, dreams and goals would all become impossible. She was only 21, had only ever had one sexual partner and would now probably not ever be able to marry, have children or raise a family. Betty had to grieve for the loss of all her dreams. She did so silently, and did not disclose her status to anyone, not even a parent. She isolated herself from social interaction, broke up with her boyfriend immediately, and stopped dating. I can only imagine the loneliness and hopelessness she would have felt after discovering her status at such a young age.

She continued to work, but spent every salary payment on disposable, immediate items. She did not take out any insurance policies, no retirement annuity. But, she did buy a funeral policy.She sought no medical help or counselling. She believed she had enough information to know that she would die young and would never live a normal life. She planned to die, saw no alternative and began to live the life of a ghost in waiting.

She came in to my rooms a few weeks ago because she had developed a rash. What ensued was an intense exploration of her beliefs, fears and thoughts about her status. At some point I summarised and told her that she had stopped living on that day in 2001, and started planning to die. She paused and a flicker of recognition in her eyes suggested that I had hit the nail on the head.

We continued our discussion, with a lot of information provided from my side. But, I had a desperate sense that this 31 year old needed to hear a message of hope. For goodness sake, here she was 10 years later and not even on ARVs yet. Which I pointed out to her. I gave her three messages to take home and digest: 1) HIV is a chronic illness, not a death sentence  2) HIV positive people can live a normal lifespan  3) HIV positive people can fulfill all the dreams of intimacy, relationships, family and having children. No question.

It pained me to see that she had given up a decade of her health, her youth, and her dreams out of 1)fear, 2) ignorance and 3) secrecy.

I have seen her again, and there is some change - she has opened up to the possibility of a future, but is still petrified of a relationship and cannot comprehend the possibility. 10 years of programmed thinking will not change overnight. I hope to be there to walk the new path of her future.

HIV- the disease of the promiscuous, the poor, the malnourished and the wicked

HIV is a disease. Mostly, it's a disease of sex. And that means heterosexual sex in South Africa.

It is not a disease of promiscuity, as recklessly labelled by people who take comfort in creating a line in the sand to make an 'US' and a 'THEM'. As long as we continue to distinguish ourselves from people with HIV by using criteria like promiscuity, then we will miss the point.

In fact, HIV is a disease of the innocent: the faithful wife , the widow, the little baby and the children. And very often it is a disease of the serial monogamist - the adult who moves from partner to partner, but only one at a time. This is the most dangerous carrier of HIV - who spreads the virus through unprotected sex, because he believes he has only one partner at a time and is monogamous, and associates this with being 'safe'.

Our Public health campaigners, politicians and scientists like to provide the slogans and the advice, but often fail the social litmus test: like the "ABC" campaign. It is noble in its intentions to promote "Abstain, Be faithful, Condomise" as the ways to protect from HIV. But, most of those are options not afforded to the women of Africa. Very few wives are in a position to demand that their husband use a condom, or to control is faithfulness, let alone to deny her husband sex if she cannot ensure the former two. The ABC is a campaign that targets men, and excludes women.

Similarly, our public health stance on Exclusive Feeding of infants puts women between a rock and a hard place. Throughout the world, mixed feeding of infants is considered the norm (this is a combination of breastmilk and other foods or formula milk). In fact, less than 26% of the world's mothers exclusively breastfeed their children.

Now, our scientific studies have shown that an HIV positive mother who breastfeeds her child exclusively will reduce the transmission of HIV to her baby. And the mother who exclusively feeds her child with Formula Milk will prevent HIV transmission completely, but expose the baby to greater risk of death from diarrhoea and pneumonia. Both of these options that have been proposed to women for the last ten years, have put her in a position of "stigmatised if I do, and stigmatised if I dont". If mum does not breast feed and walks home with the formula milk tins, then she is automatically labelled as HIV positive.  If she exclusively breastfeeds and refuses the advice and suggestions of the aunties and grannies who want to provide the baby with tea and porridge and sugar and formula milk, they similarly ask the question ' why wont you accept our cultural tradition to mixed feed. Is there something wrong, like HIV?' these poor mums are set up for failure; whichever choice they make, sets them up to be on the wrong side of the cultural norm.

We do the same with our messages about promiscuity and laying blame at the doors of those who are infected, instead of recognising that 'there but for the grace of god go I'. It is our very human nature that makes us take chances, engage in unprotected sex without knowing our partner's status, trust our husbands and wives to be faithful and to assume that it won't happen to us. It makes us more comfortable to think that this is a disease that belongs to the poor, the promiscuous, the undernourished and the wicked.

Arsenic is also "Natural" - would you take that?

Ok, so the title is a little harsh, but really, sometimes I think people need a good shake.

HIV positive people seem to be 'soft targets' for so-called natural products. I say so-called, because it is a self-proclamation. If you want a product to sell, add words like 'natural', 'organic', 'herbal' and people believe a whole lot of things about a product automatically. We believe that it must be 1) safe (i.e. natural implies that there is no risk involved. We believe it must be 2) harmonious with the body because it is from mother earth and we are earthly creatures, thus our body and the product will be 'as one', it's all very zen. We believe that the product must be 3) effective because we want to believe it and we are desperate for the 'one pill cure'. Besides, the label said it does wonderful things.

Here are a few of the "Natural" treatments that are often used in South Africa:

Over christmas time a patient of mine overdosed on Epsom Salts, because as part of her 'natural treatment regimen' she was told to drink 3 cups a day. She ended up in the emergency room with chest pain and vomiting. See here for a 'recipe' for this so-called liver cleanse. It sounds too extreme for words: http://curezone.com/cleanse/liver/huldas_recipe.asp

Gripe water is in virtually every mother's medicine cabinet. It has been around for over a century and is largely thought to be safe and effective for colic. However, there is no compelling evidence for it and in fact hospital doctors will occasionally see children who have been overdosed on Gripe Water who come in with unconsciousness and brain swelling. http://mygripewater.com/

Many believe that garlic, taken as raw cloves, is good for HIV. However, it also interferes with some of the ARV drugs and can cause bleeding problems See this site for the typical glowing reports of the natural remedy. Note how the site includes no warnings and no suggestions on when one should be cautious about the use of garlic: http://www.miracleofgarlic.com/hiv-and-garlic/.  Then go and have a look here : http://www.nih.gov/news/pr/dec2001/niaid-05.htm to learn about how high doses of garlic can cause side effects and decreased effect of ARVs; or here: http://www.umm.edu/altmed/articles/garlic-000245.htm.

African Potato or hypoxis, has been shown to have potential to increase the HIV load in the blood.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1156943/  
http://www.iol.co.za/news/south-africa/hiv-warning-on-african-potato-1.109328.
Promoting and selling African Potato supplements: http://www.ageless.co.za/200608%20-%20hypoxis%20and%20rose%20gernaium%20oil.htm

Another patient of mine, spent over R100 000 on visits and treatment to receive a 'so-called' natural therapy for his HIV. He had to travel to the clinic every day to receive a 'drip' which apparently contained vitamins and saline. Nothing earth shaking there. But, the promise was that his CD4 count would rise and the virus would be controlled. He was required to have his blood tests done weekly (at R1000 a pop). He came to me in desperation after taking this treatment for about 4 months, after he saw a leap in his viral load and a decline in his CD4 despite his expensive, natural treatment. It is hard to explain to this desperate man that he has been taken for a ride. He bought into a false promise, simply because it had been described as natural and miraculous.


Now, did you know that around 25% of our modern day drugs are actually developed and derived from plants? And yet so many people are reluctant to use drugs prescribed by their doctor because they perceive them to be 'chemical' or 'toxin'. Ironic isnt it?

Some examples:
Aspirin (for pain and fever) : from willowbark
Quinine (to treat malaria) from the quinine tree
Hyoscamine ( to treat abdominal cramps) from the black henbane
Digoxin (used in heart conditions) from the foxglove
Penicillin (an antibiotic) from mould
Sennosides A,B (a laxative) : from cinammon


The lesson here is to understand the marketing value of the term 'natural' and to apply some critical questions before choosing a 'natural product' 1) Does it do what it claims to do? 2) Does it have evidence? 3) Is it safe? 4)Who should use it and who should not? 5) Will it interfere with my other treatments?

A great site to check out is http://www.drugdigest.org/ : if you are standing in a chemist with a product you can check out the ingredients at this site and it will give you an idea of whether there is anything to the claim.

Unprotected Sex, Conception and HIV

Whether you agree that HIV positive people have the right to have children or not is a very personal and emotive issue. However, to be frank, it is irrelevant what you think. Because, human beings are exactly that, human. And so, knowing that you are HIV does not suddenly switch off your natural biological desires to have a family, bring children into the world and surround yourself with the warmth and love that can only be felt by a family.

First thing to understand is that this has been an extremely controversial area of HIV medicine for a long time and there are many differing opinions on what is safest and best. At the end of the day, the decision to conceive is intensely personal and should not be dictated by a health care provider.

Many health care providers and people will unhesitatingly tell you that you should not fall pregnant. Fertility experts will encourage you to invest thousands and thousands of rands in methods of Guaranteed Risk-Free, but Not Guaranteed Result methods of conception (like IVF or AI). There is nothing wrong with these methods. But with improved HIV drugs out there, HIV is becoming less of a 'fertility issue' (as in : how do we help this couple to fall pregnant when they have HIV and cannot have unprotected sex, thus an inability to fall pregnant) and is becoming a pure 'infection' issue (as in: here is a couple who are both fertile and can certainly fall pregnant through unprotected sex. How do we allow this natural event to happen without infecting one/both partners and baby?)

Second to understand is that there is a big difference between unprotected sex with ARVs and unprotected sex without ARVs. I will go into this more.

But first, what do you understand by the word 'safe'? If I say that it is safe for you to cross the road do you assume that I am providing a guarantee that you will not come to harm? In actual fact I am telling you that your risk is minimised and that you are most likely to cross the road without coming to harm. However, I cannot guarantee you that a speeding car will not fly through a red traffic light and hit you as you cross the road. Looking at the safety in terms of HIV transmission is similar.

We now know that a couple can conceive through the old-fashioned method of unprotected sex safely (i.e. with minimised risk, but not absent risk) if certain conditions are met.

Yes, let me say that again. A couple where one or both partners is infected CAN conceive through unprotected sex without harming eachother or the baby.

IF the following conditions are met;

• Both/the HIV positive partner's viral load must be undetectable. This means that our laboratory test cannot reliably count any copies of the virus in the blood.

• Neither partner is ill or suffering from a sexually transmitted infection at the time.

• Ovulation timing has determined that the woman is fertile around the planned time of unprotected sex. click here for more about timing of ovulation

• If one partner is HIV-, then he/she must have made an informed decision about taking Pre-exposure prophylaxis (PrEP) and Post Exposure Prophylaxis (PEP). click here for info on PrEP and here for more on PEP

So, if this is something you are considering or want to know more about: ask your health provider questions, make sure that you are getting current, up to date answers and not being dismissed based on outdated knowledge. Be safe, be responsible and enjoy a normal life with the same expectations of having a family and raising children.