HIV Support South Africa

World Disclosure Day

2011-12-02T17:19:00.001+02:00

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

2011-10-09T22:38:00.002+02:00

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

2011-07-14T22:32:00.000+02:00

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?

2011-04-27T19:27:00.000+02:00

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

2010-09-08T11:19:00.000+02:00

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.

Love , Hope and HIV

2010-04-19T09:55:00.000+02:00

In the early days of counselling HIV+ people ( up till about 2005) it was strongly discouraged for HIV positive people to engage in new relationships, especially if the partner was HIV-. And the topic of pregnancy and families was completely taboo - you were simply told not to fall pregnant. Ever.

What a long way we have come in a few short years. I cringe to think of the strong arm tactics that were used in the name of 'counselling'. In fact, if any of you watch the local soapie Isidingo, you will recall that this was about the time that Nandipha was found to be HIV+. And five years later, she is still sticking to the belief that she must never fall pregnant. I think Isidingo needs to get some up to date medical advice on this topic. I think Generations does a much better job of dealing with the issue.

Is there a place for Love in your life when you are HIV positive?

It is heartbreaking for me to come across young adults and teenagers who have had the devastating diagnosis made, and who feel their entire future is erased, scratched out. I cannot fall in love and marry ( in case I infect him/her), I cannot have children (in case I infect him/her and the child), I will have no family of my own and will grow old alone and lonely... These are some of the thought processes that flow naturally after the diagnosis. I am sad to say this is still a common misconception even among health care workers, the very people tasked with educating and counselling.

I counselled a young man recently, who is only a teenager. He was despondent about the loss of his future and had had thoughts of suicide. He was not so concerned about the virus he was infected with, as with the effect that this virus would have on his hopes, dreams and life. Now, in these sort of situations I tend to give three short messages of hope:

1) An HIV positive person can fall in love and marry whomever they choose (HIV positive or negative) and live a long life together without infecting/reinfecting the loved one.
2) An HIV positive person can have a family with healthy HIV negative children who have a bright future ahead of them and two healthy parents to watch them matriculate, get married and bear their grandchildren
3) An HIV positive person can live a completely normal life and can die of old age.

Now, these are all possible. Sure, they require some planning and effort and alot of honesty and team work. But, with good health care, commitment to your medications, healthy lifestyle choices and careful planning it is all possible.

Each day is a day to reclaim your health and to rebuild your future. Sure, it will be different to the pre-HIV vision, but you can still have it all. Be responsible and proactive and it all becomes possible.

'Tis the (flu) season

2010-03-04T11:22:00.002+02:00

In South Africa as autumn has hit our country it is time to gear up for the flu season. Now this year we can expect a bumper crop of flu viruses to hit us since we are hosting the FIFA Soccer World Cup in June. This means an influx of foreigners from all over the world bringing their dollars, pounds and their bugs on the plane with them.

So, if you are HIV positive how are you going to prepare for this season? i advise a 3 step approach:

1) Maximise your health to protect against the flu
2) Get your flu vaccination in the next 8 weeks
3) Be armed and ready to treat the flu if it hits you.

1) So, this is the proverbial healthy lifestyle that all experts advise but so few of us really embrace. It's all about stocking your body with vitamins and antioxidants (the good guys that soak up and neutralise toxins in the body). Get lots of veggies and fruits - variety will give you a range of vitamins.

Excellent vitamins to boost are Vitamin C 1000mg, D 400 IU and E . These are important in the immune system to fight infection. Echinacea and garlic are also useful to add but doses are variable and not standardised.

It is also a good idea to take a probiotic ( a tablet containing beneficial gut bacteria that will help to protect the gut from invading organisms) although there is no evidence that it will prevent the flu but it seems to shorten the severity and duration of it.

Anyone who does Yoga or is familiar with Ayurvedic medicine may be aware of the Neti pot which looks a little bit like Aladdin's lamp. It is used to pour water through the one nostril while tilting the head and the water then flows out the other nostril. Interestingly, this is effective to cleanse the nasal passages and assist in preventing colds, flu and sinus problems. For those of you not so adventurous, a simple saline nasal spray is also good. A couple of bursts of this a day will help to cleanse the nasal passages which are the main port of entry of viruses.

Finally, good hygiene and handwashing practices will also help to spread viruses (especially important if you have kids).

2) Flu Vaccination. For some reason the topic of vaccination always seems to get people hot under the collar. If you are nervous about vaccinations or have heard stories about vaccines causing other illnesses then your first stop should be here MMR-autism link myth.

Each year a flu vaccine is produced and offered to the public. If you are HIV+ this is an extremely good idea to be vaccinated yearly. However, the lower your CD4 count, the less effective the vaccine may be but still worth doing.

What does the flu vaccine do? Well, it vaccinates you against the 3 strains of flu that have caused the most severe illness around the world. The vaccine will stimulate your immune system to develop protection against these 3 strains specifically. So, in answer to your next question (How come I get the flu even though I had the vaccination?) - the flu vaccine does not stop you from getting the flu at all, but will protect you from the most serious forms of flu. This is why it is still possible to get the flu even though you have had the vaccine.

You need to get your flu vaccine every year because it is a newly developed vaccine that has the most recent viral strains included. Now is the right time to get vaccinated so that you have a few weeks to build up your immune response before the season hits in full strength. Check out the NICD page for swine flu and flu updates South Africa

3) If you are unfortunate to get the cold or flu this season, then don't panic. Remember the old wisdom: 'treat the flu with drugs and it will be gone in a week, treat it at home and it will be gone in seven days'. Most people will develop a fairly mild illness that affects the upper airways (the nose/sinuses/throat/voicebox) which may be uncomfortable but not a serious illness. Some will however, develop the 'real' flu which will consist of all the former symptoms as well as general body aches, fever, fatigue and possible nausea and vomiting. The flu really packs a mean punch and can result in a week off work - so, best to have a plan of attack if you are struck by it.

I recommend that you keep some useful over the counter medications at home for these occasions (because the flu always seems to strike after the shops have closed). Personally, I advocate symptomatic relief for pain and fever with anti inflammatories like : MedLemon, Nurofen, Compral.

A good old fashioned hot toddy works wonders and even has an evidence basis to it: take a cup of boiled water, add 2 tsps lemon juice and 2 tsps honey and a tot of whiskey ( if you are so inclined). Honey has antimicrobial properties, the lemon is an antioxidant and the whisky , well, that helps you to sleep ( and hopefully nukes any bugs too).

For the irritating nasal congestion sprays like Iliadin and Drixine are useful- although I suggest that you try to reserve them for night-time (when you really need to be able to breathe) and rather let the mucus drain freely during the day. It's also important that you limit their use to 3 days otherwise the congestion may worsen.
During the day, use a tea tree oil nasal spray or salt water nose spray (like Salex) to help.

Headache and body aches generally respond well to the anti inflammatories, but if you need a bit more kick, then codeine based pain killers are the next step (can be taken with the anti inflammatories) such as Sinutab, Lenadol, Syndol, AdcoDol.

The specific antivirals (a medication that specifically targets the flu virus) that are useful for the flu include Amantadine,Rimantadine, Oseltamivir and Zanamivir. However, they should really be started within 48 hours of the flu starting and should be reserved for severe flu cases. In the case of HIV, the lower your CD4 count or the worse your overall health, the more important it is for you to start the antiviral agent as early as possible. In general, if 10 people get ill, 7 will have a mild illness ( a 'cold'), 3 will have the 'flu' and 2 will require antivirals.

There is no value to be had from antibiotics (medication that targets bacterial infections) as the flu is a viral illness and will not respond to antibiotics.

Other approaches that may help are to take mega doses of Vitamin C (1000mg three times daily ), increased echinacea dosing, steam inhalation, Karvol capsule inhalation, ACC-200 effervescent tablets (to decrease mucus production).

You will notice that I have not mentioned cough mixtures. This is deliberate, because they simply do not work. You will probably get more benefit from a hot toddy or plain honey than the many cough mixtures on the market. The only exception I make is if you have a painful, hacking cough that is keeping you awake (or your child). In that case I would recommend a codeine based medication such as Pholtex syrup (or Pholtex Junior).

Finally, most people will not need to see their doctor with the following exceptions: if you have a CD4 less than 200 or any other serious illness (like TB), or are pregnant then you are at higher risk for complicationsand I would recommend that you see your doctor as early as possible.

For more information on the South African seasonal flu statistics see here

Cheers, Gail

The Information Age revolutionises HIV

2010-02-09T11:50:00.000+02:00

When my parents grew up, it was in the era that people believed education was key. It would get you a good job so that you have a salary, a pension and a good stable life.

When I was growing up, Education became about options. It gave me the option to chart my own course, start a business, choose a vocation or take on a salaried position.

Nowadays, Education is about so much more than job security and pension plans. We are in the information age where knowledge is power. The world of HIV is a great example of this. Think back to the eighties when this scary 'gay disease' was discovered and we all ran away from gay men believing it was a plague. Here we are today, armed with a lot more knowledge and with tools that have developed as a result.

If you are HIV+ in 2010, your life is different to how you always envisaged it to be sure. But, thanks to information and education, your life can still be normal (different can still be normal, it's just different). You are armed with thousands of websites, articles and specialists around the world who are living with HIV or working with HIV. You can empower yourself and make informed decisions about your future and about your health. You can take back control over this cunning virus that was previously so mysterious.

The more you know about living with HIV, about living healthily and exercising, the more choice you have to assume control of your life. There are thousands of supplements out there, and it can be confusing with conflicting opinions - but you have a great opportunity to choose. Even the ARV drugs are varied and there is some leeway to choose which regimen you take. You have a choice of doctors and healthcare providers to team up with on your journey to optimum health. In the bad old days, there were few doctors who knew about HIV, and fewer doctors prepared to treat patients with it.

The revolution in the information age with the explosion of the internet is a great tool. The mere fact that you are reading this is a testament to this. You can find words of encouragement, tales of personal stories, outrageous myths and reliable research results and drug information all from the comfort of your home. This also allows you to remain anonymous which is another important factor in maintaining your quality of life. The privacy to manage and travel this road with the supporters you choose without wearing a giant label on your head, this is thanks to the information available that allows you to make your own decisions and lead a normal life.

The benefit of HIV research has shown us that it is possible to live for another 43 years after starting ARVs, a piece of information that may just bring hope back to someone coming to terms with his diagnosis. The wealth of education we have gained from treating pregnant women with HIV has helped us to confidently support women in conceiving and having children, allowing HIV couples to reclaim their right to a family and a future.

Thank goodness for the education we have, we need to spread it and get the information out. It is the information that will help to rid us of stigma. Ignorance and stigma are so closely tied that I believe it will be impossible to discriminate against people with HIV once the ignorance is removed.

New Year's Revolution

2010-01-17T20:33:00.002+02:00

Well, it's 2010, the long awaited year of the FIFA World Cup. What on earth will we do with ourselves once the world cup is over? Retreat into our cocoons and mope, or have you got a plan for the year? Are you motivated and inspired, have you made any new year resolutions?

A New Years Revolution (yes, I mean Revolution) is what we all need, something to shake us out of complacency, to reinvigorate and refocus the energy on what is important. Maybe for you it will be a chance to prioritise your health and make some positive changes to your lifestyle - what about eating 5 servings of fruit and veg a day? Or drinking more water in the morning? Perhaps it is deciding to tighten up your medication timing?

Whatever it is for you, let this be a year of improved health, greater wisdom and growing peace. Renew your commitment to strive for optimum health, make better choices and feel the satisfaction of getting older but healthier than ever before.

What about Yoga? It is great for overall health and fitness, but especially beneficial in HIV positives because of the mind body connection and the focus on breathing to control pain, anxiety and symptoms. Plus, its fun and relaxing at the same time.

If your resolution was to join the gym - which I think is a resolution for about 50% of people at the beginning of the year, may I challenge you to be a little more specific? Attending gym may not hold any benefit for you if you are not doing exercise that is properly supervised, constructive and enjoyable. Unfortunately, too many of the gym staff members have little training and knowledge to be able to offer sage advice for your program. It is probably worth spending the money to see a Biokineticist for an assessment that will be tailormade to your goals and ability as well as your medical constraints.

Overall, although we all roll our eyes at the thought of new year resolutions, they present us an opportunity to spark a revolution in our life, to start a movement and to become healthier.

Here's to you and your revolution.
Gail

WORLD AIDS DAY in South Africa

2009-12-02T21:19:00.000+02:00

What is it all about and how do we make this day have personal meaning for us? It's really a day about solidarity, standing up and showing support, encouragement and understanding to those living with HIV/AIDS.

I have to be honest, I was extremely impressed with some of the announcements that came out on 1 December. Particularly from our President Jacob Zuma. He delivered an unambiguous and clear statement that left no room for doubt. It made me proud to be South African again, as for so long, 'South Africa' and 'AIDS denialism' have been a matching pair.

Particulalry exciting is the raising of the bar on the CD4 cut off levels for treatment. Pregnant women with CD4 counts below 350 cells/mm3 automatically qualify for lifelong HAART/ARVs. Part of me is singing from the roof tops and ululating that we will be able to drive down mother to child transmission and prevent more infection of babies and protect them from being orphaned. Another part of me is rolling my eyes in exasperation, thinking " about bloody time. The World Health Organisation has recommended this for a number of years". And another part of me is sighing anxiously at the likely doubling of workload in my own clinic at Chris Hani Baragwanath Hospital in Soweto. Currently, our clinic is pretty full just dealing with the advanced cases of HIV in pregnant women with CD4 counts under 200. Now we will need to accommodate all the pregnant women with a CD4 under 350 which will certainly double of number of patients. With no increase in health care staff, and no additional work space.

So, it's all a bit overwhelming. Don't get me wrong. We will make it work, and I think the additional stress and burden on the clinic will certainly be worth it if it means that for every pregnant woman we treat, we are preserving the future of that mother to raise her unborn child and to protect her child from HIV. It is really two for the price of one and that is reward in itself. But there will be teething problems no doubt, and we will have to 'vasbyt' and tackle the problems as the arise and maintain our standards.

It really is encouraging, at last, to hear the voices of denialists quelled, because now we can start to embrace the nitty gritty of how to get people well, rather than arguing the question of whether they are sick at all.

Live positively and in peace
Gail

Your relationship with your doctor

2009-11-22T20:50:00.000+02:00

I trained as a specialist Family Physician and one of our main focus points is on cultivating a healthy patient-doctor relationship. Believe it or not, this is a postgraduate phenomenon, and certainly very little emphasis is placed on bedside manner in the undergraduate Medical Degree.

In fact, medical students skills are grown in an acidic environment: we learn by seeing patients who are admitted in a hospital, patients who are already held captive in the system. In our South African case, patients are still very much in awe of doctors and their status. Patients do not feel they are in a position to say "no" to these students, and thus the hierarchy is established very early on. The training doctor assumes the position of power, knowledge and authority. The patient adopts the role of passive, meek, child who is told what to do. This is how our medical students learn to relate to people, their patients. It is no surprise that so few doctors are aware of or work at growing a relationship with their patients.

If you are a patient, there are some things you need to do and know in order to establish a good relationship with your doctor.
1)You, the patient, are the one who takes ultimate responsibility for your health. This means that you have to be your own advocate for your health. Ask questions, ask for resources and information about your condition and do not be intimidated by your doctor. He or she has trained for many years and has skills and knowledge to help you. But he will never ever know exactly what it feels like to live inside your skin.

2) You are the expert on your condition. You live with it every day, get up in the morning and go to bed at night, clothed in this condition like a robe. Your doctor cannot possibly know all the details and nuances of what it is like to live with HIV. This means that your doctor may not always have an explanation for every ache or pain, and may also make mistakes. Doctors are human and therefore fallible.

3)Doctors take different shapes and forms. Some may be trained in homeopathy, some in Ayurvedic medicine, some in traditional medicine, and some in western medicine. It is your right to choose the type of healthcare that you wish to receive, but it is also your responsibility to ensure that you are informed about your choice, Do some research about the doctor you are seeing and his/her skills, and ask questions about their management of HIV. A doctor who is comfortable with his knowledge, and who is sound in his practice should not angered at questions. Anger is a defensive response that usually conceals selfdoubt or weakness.

4)You and your doctor are a team, not a parent and child. You should be able to establish a relationship where there is mutual respect, acceptance of responsibility (you accept the need to adhere to your chosen treatment plan, the doctor is responsible to provide you with sound, evidence based advice shown to be effective) and a trusting relationship (you need to feel secure that you can discuss any confidential or difficult matter with your doctor, and she needs to offer the safe space to allow you to open up).

5) Be assertive. If you are not happy with your doctor's handling of matters, then you are quite entitled to seek a second opinion. At best, it will confirm that your doctor is correct and trustworthy, at worst, it will give you a differing opinion which will need to be considered. If you do not agree with a plan of management, then tell your doctor. Remember, her agenda is to get you better, treat your illness, and to do this with minimal problem within the consultation time. Your agenda may be different: you may want her to explain things or just to be listened to, you may need reassurance or have other symptoms to be treated.

The goal with your relationship should be this: you should aim to remember his advice and to forget what he looks like. I want to remain in the background of my patients lives - if I am in the foreground, then it is an indication that the patients illness has taken centre stage and is consuming them. There may be times of illness where this is unavoidable. But, there will be times (and hopefully these will triumph) where you are well, living your life, and even forget that you are HIV positive. You keep your six monthly appointments with your doctor, but in between you can forget about her/him and live a healthy fulfilled life. That is the kind of relationship I aspire to with my patients, because the more invisible I am in their life, the better it is for them.

hmmmmm.... over to you.

2009-11-18T19:58:00.000+02:00

So, I have just been on holiday and feeling rather relaxed, which is why I havent posted in a couple of weeks. But I was thinking, if there is anyone out there reading these blogs please let me know? I am handing over to you - post a comment, let me know what interests you, or if there is a question or something of interest you'd like me to write about. I am all ears...

The man who fought back with courage and grace

2009-11-01T19:50:00.000+02:00

I want to tell you about one of my patients, an amazing man with courage, dignity and persistence. A man who has battled severe illness for the last two years and came close to dying on more than one occasion. But he fought back, and this past Friday , I discharged him from hospital with the biggest smile on his face.

Anyone with a chronic illness faces the possibility of hospitalisation and severe illness. When you are HIV positive this possibility often seems more like a certainty than a maybe. For this man it was a long and arduous journey. I may have been his doctor, but he taught me many valuable lessons.

1) Give in to the reality of illness, but don't give up. When faced with severe illness, the loss of his independence and the reliance on others for his daily needs he did not rage against the unfairness.
In accepting help from others, he acknowledged his frailty with grace and dignity which allowed those helping him to feel appreciated and to offer the care willingly.

He remained positive at all times, and committed to getting better. He placed his trust in me and met every new challenge head on.

2) Keep your eye on the ball. In the last few weeks, he was unable to eat and was placed on a form of feeding where all the nutrients were provided through a drip into the vein that leads to the heart. He would be forgiven for spending his days sleeping and staring out the window. Instead, every time I saw him he had his glasses on, pen in hand and a book open. Some times it was his text books for his professional examinations, others a novel, and some times it was the bible. He handed in an assignment for his course work while in the hospital, and continued to study for an examination which he will now sit for next week.

3) Do not let the virus steal your dignity. This is a man with poise, with great presence and a strong sense of self. Even in his weakest moments, when overcome by diarrhoea and vomiting, he managed a smile, and his eyes retained their identity.

4) Be grateful, there is always good around you. Every day, he found something to be grateful about, whether it was the smile of a nursing sister, a visit from his family, or a pleasant cooling breeze through the window by his bed. He took time to notice his environment and to appreciate the smallest gift of life.

I have learned from him, a lot about the virus and about the illnesses that are ushered into the body on the shoulders of the virus. But, I learned about heroism and humanity from this man and I am grateful for this.

other stories of courage:
http://stillarriving.blogspot.com/2009/06/why-i-really-fight-hiv.html

http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/AFRICAEXT/ZIMBABWEEXTN/0,,contentMDK:22004011~menuPK:375742~pagePK:2865066~piPK:2865079~theSitePK:375736,00.html

The far reaching effects of stigma

2009-10-17T14:27:00.000+02:00

Here in South Africa HIV is a stigmatising illness. It is remarkable that even in developed countries people living with HIV still face discrimination, blame and rejection for having a viral infection.

If you read the link posted on Facebook today about Uganda's homophobic criminal laws and their refusal of access to HIV treatment if you are gay, it highlights what a huge amount of work we still have to do.

HIV is not a gay disease, in fact, in South Africa, it is a heterosexual disease ( but this does not mean that gay people don't get it). It does not require promiscuity to catch it, which is still a very common misconception which the media promotes. Serial monogamy puts you at high risk too, and by this I mean, moving from one sexual partner to another in succession, but never having two partners at the same time. Anybody who is having sex without a condom (be you gay or straight, child or adult) is putting themself at risk Full Stop.

But why is the stigma so bad here? Well, its a bit of a vicious cycle. Let's say that Jane is positive. She knows she is positive but is afraid to tell anyone for fear of rejection, violence, hostility, retrenchment or whatever reason. So she keeps it to herself. She might find herself travelling far distances to seek treatment at a clinic where she will not see anyone she knows. She begins to hide her treatment from her family, or lies to them about the medicine. Her fear of the perceived outcome of disclosing her status has forced her to lead a secret, humiliating life. She has no-one that she can talk to about this and so she also cannot get access to accurate information. She hears the myths and rumours about HIV in the community but does not have the courage to stand up and correct this information in case people assume that she is HIV positive. Little does she know that her brother is leading exactly the same kind of secretive life and living in fear that people will find out his status. So, they live side by side and lead parallel lives, never once realising that there could be a supporting hand, a comrade to take this journey with. Neither of them need live in such fear, it is the fear that forces the lies. And one lie creates more lies. This is a very hard way to live.

Now imagine thousands of people living this lie. The people in your office, people in your church, people inside your own home. The saddest thing about this is that this virus is so widespread, but so hidden that there are people losing out on the comfort and relief of being able to share this burden with someone.

Children may feel the stigma even worse. Take Sipho, a 9 year old boy who has to go to the clinic with his aunt every month. His aunt tells him he has TB and this is why he needs to get treatment and see the doctor every month. But he sits in the queue and sees the other kids, he hears them talk, he has realised that this clinic is actually an HIV clinic. But, he also realises that he is not supposed to know that he is HIV positive. So, he suspects that he is positive but can't talk about it. He has to keep up the pretense of having TB. But, he finds indirect ways to challenge his aunt. He asks her how his mum died, what caused it? He asks her if all the kids at the clinic have TB, or just him? But her answers are never satisfying or she avoids answering him. So, over time, his frustration builds up, as does his fear. Surely, whatever his illness is it must be so horrible that it can't be discussed. Maybe his aunt is too scared to tell him he is going to die. And his anger grows, and he becomes hostile and starts acting out with his aunt. He refuses to take his medicine, he runs away on his clinic visit days. The very person who is trying so hard to care for this child, to help him to stay healthy and grow, this very person is burdening him with the secrecy of HIV. Kids are more sensitive than adults will ever know, and they pick up on these things sooner than most adults are ready to talk about it. If this is a situation you need to deal with, be ready for your child's questions. Because they will come. And the rule of thumb is; if a child is asking you questions about his condition, he is probably ready to hear the answers.

Stigma comes from our politicians and the senseless confusing messages they send out. It comes from our dinner tables where we talk about HIV as if it is something that happens to 'them' and not 'us'. It comes from our desperate need to apportion blame - 'he's gay','she is promiscuous','he didnt wear a condom', because then it allows us to have control over it. But the truth is, these days you just can't be sure. You cannot assume that because your partner is white or middle class or is fat, that he/she will not have HIV.

And it is when we all realise that we are all at risk, that it could be any single one of us in that boat, it is then that the stigma will start to fall away. When you understand the vulnerability of all of us to this virus, the anger falls away, and so does the blame. And finally the stigma. It is when our brothers and mothers and colleagues and politicians start to stand up and speak out about their status, that this will become something normal in society. Right now, it is all so secret that people live in the false safety of ignorance. Confront the ignorance, and the discrimination will fall. OTherwise the stigma continues in its vicious cycle. The silence is feeding the stigma, the stigma feeding the silence.

Stigma means delayed access to Care: http://www.aidsmap.com/en/news/7E6CC8A8-CD31-42A1-B5FC-C11887B8B769.asp

Stigmatising treatment by health care workers: http://www.aidsmap.com/en/news/AF7D882F-2E46-4E94-9A05-2540781AA567.asp

HIV anti-stigma movement http://www.hivaidsstigma.org/

The psychology of HIV stigma http://psychology.ucdavis.edu/rainbow/HTML/aids.html

Pregnancy, what's the risk?

2009-10-05T11:34:00.001+02:00

Hi there,

Thought I'd do today's blog as a bit of a tutorial because the whole issue of pregnancy and transmission of HIV to the baby is very confusing, even for the professionals. Part of the reason it gets so confusing is because we use different rules in the private sector and state sector. For example, in the private sector all women should receive triple therapy HAART for the duration of their pregnancy. However, in the public sector, women get different treatment according to their CD4 count and according to their province, clinic and stage of pregnancy they are in.

If you are pregnant and HIV + , then you have about a one in three chance of passing HIV on to your baby. That is the scenario if we do nothing, we dont intervene, we dont treat, we stand back and watch. A 30% chance that your baby will be positive.

Now, the chance of passing the virus on depends on your own health status, your CD4 count, your viral load (how many copies of HIV are detected in your blood) and other factors. So, for each person, the risk will vary, but on average we are looking at one in three.

If your viral load is high ( say over 100 000 copies) then your risk of infecting your baby becomes much higher (around 50%). Similarly, if your CD4 count is very low, your risk is much higher (around 40 to 50%).
It is very important for you to sit down with your doctor and assess your own personal risk according to your CD4 count and Viral Load and health. If you are Stage IV (i.e. you are sick with an AIDS defining illness like PCP or Kaposi Sarcoma or Extrapulmonary TB) then your risk of infecting your baby is also higher.

So, how do we intervene and protect your baby from HIV?

The first thing to know and understand is that there is a different standard of care in the private sector and public sector. This is a reality that we face, and we have had a government that has, in the past, been reluctant to step up to the challenge of HIV. Unfortunately, this left pregnant women in the public sector receiving inferior treatment to those of the private sector and first world countries. In fact, its not just first world countries, Botswana has been leading the way in providing first world treatment to pregnant mothers for many years now. I am pleased to say that in 2008 pregnant women in public care began to receive AZT (Zidovudine) therapy in their third trimester ( 7 years after the Western Cape began to do this)

If you are a patient at a public hospital/clinic, then you will expect to start AZT tablets at 28 weeks (about 7 months pregnancy). When you go into labour, you take your single dose of Nevirapine that has been provided to you. The combination of these two medications (and hence the term dual therapy) will reduce your chance of infecting your baby to about 6%, or one in sixteen.

If you do not book at your antenatal clinic and do not go for follow up care then you might not receive this care at all. If you arrive at the clinic and are in labour, then you will be given the single dose of Nevirapine to take, but will not have had the benefit of the AZT from 7 months. With a single dose of Nevirapine, your risk of infecting your baby is 13% or about one in eight.

However, if your CD4 count is low (less than 250) then all of the above options are skipped and you go straight to the full ARV (Antiretroviral) treatment, otherwise known as HAART (Highly Active Antiretroviral Therapy), ART (Antiretroviral Therapy) or triple therapy (so-called because we always use a minimum of three ARV drugs).

The same applies in private care. If you are fortunate enough to afford private care, then you will also go straight to the third option of HAART during your pregnancy (this applies whether your CD4 count is 900, 500 or 100). If your CD4 count is over 350, then you will stop the HAART once your deliver your baby. If your CD4 count is less than 350 you will continue the HAART lifelong for your own health. If you receive HAART, then your risk of infecting your baby is less than 2%, ie. less than 1 in 50 babies will be infected.

So, let's recap: If we do nothing, a 30% chance of an HIV+ baby.
                      option 1: with a Single dose of Nevirapine: a 13% chance
                      option 2 :With dual therapy (AZT and Nevirapine) a 6% chance.
                      option 3: With triple therapy (HAART/ARV) < 2% chance of an HIV+ baby.

Which do you ideally want for your pregnancy? Option 3 - because this provides the best option for you and your baby - and for both of your futures.

All babies that are born to an HIV + mother should receive their own medication too: a single dose of Nevirapine within 72 hours of birth, and AZT syrup to be taken for between one week and six weeks (again depending on various factors).

To see my presentation to the HIV Clinicians Society in Sept 2009 discussing HIV in Pregnancy: http://www.youtube.com/watch?v=F6S1hOGsnRg

The Gift of Illness

2009-09-23T06:56:00.002+02:00

Life has a few lessons for all of us. For those living with a chronic illness some of the lessons are hard, but some are also gifts.

HIV forces you to stop what you are doing, to reflect and take stock of your life and the factors that led up to this moment. There are deep emotions to deal with; the guilt, the anger, the disbelief and the shame. But, once you move on from that, the opportunities open up to you.

Some people go through their life enjoying all the excesses of it and all the joys. But with most people it catches up with you - the youthful excesses, late nights, sex, drugs and rock 'n roll take their toll on the body. The body becomes silently ill with heart disease, high blood pressure, high cholesterol, obstructive lung disease. All these are disease of lifestyle. Often, the first sign of a problem is when the person is struck down by a stroke or a heart attack. These are debilitating if not fatal events earned through years and years of abuse of the body.

So, how is this an opportunity you may ask? Well, if you know your status and you are positive, then you are in a position to not only correct and improve your health, but you are in a position to become healthier than ever before. And I mean that. Your new found awareness of your body and the stress that it is under, gives you the chance to take back the control of your body that you previously took for granted and in so doing, abdicated responsibility for.

Get informed, emower yourself. Find out about your illness and what you can do about it. If you are in the early stages of illness and your CD4 is still high, then great, get proactive and make the changes that you need to stay healthy for longer. Start exercising, find out about supplements and nutrition, go to yoga, learn to meditate, learn to manage your stress better, quit smoking, cut down on alcohol. Do all the things that will benefit not only your chronic illness, but will take you on the road to optimum health.

If you are at a low CD4 or are ill and need ARV treatment, get proactive about this too - make sure you have a good healthcare provider that you can talk to and be honest with. Get hold of your medical aid and register on their HIV program, get counselling from them. Read up, watch tv, talk to others, use the internet, just get yourself aware of all your options. And do all the same above to fix your lifestyle so that it is supportive of your health and not destructive.

It is also a wake up call to order your finances and policies. If your fear is that you will die before your children are grown up, then dont hide from this fear, do something about it. Go and take out a funeral policy and start saving money, or investigate the life policy otpions out there for HIV positive people. Make a plan for your children or spouse so that if the worst comes to the worst, then you leave your family with financial security and a funeral that is paid for.

Too many people live their lives unconsciously. Unconscious of their effects on the environment, blissfully unaware of the assault they are making on their physical being. Chronic illness gives you the gift of awareness, the ability to become present in the moment and to appreciate your strengths and weaknesses. It is the chance to lead a life of consciousness that can go beyond your own body's health, but can impact on every aspect of your life.

Try to find the blessings in your disease and the capacity to treasure moments more preciously, because you are aware how fragile life is. One of my favourite quotes is from the movie Shadowlands. A woman is dying of cancer, and says to her lover:

'The pain is part of the happiness then,
The happpiness is part of the pain then.'

You're HIV + and you want to have a baby?

2009-09-13T19:35:00.005+02:00

I have had a few queries from around the country, asking specifically about pregnancy and HIV. To be more specific, to ask how to fall pregnant when one or both partners are HIV +. It is actually a simple process, but it's the emotional aspects that make this so complicated, and just like any couple trying to fall pregnant, results are not guaranteed.

The decision to try and fall pregnant can be a strongly emotional one, and cannot always be rationalised. It is a deeply personal decision and a human's desire for children needs to be respected at all times. Adoption is an option to be encouraged and discussed but will not be a solution for all couples. The reality we face is that HIV is a chronic disease that affects young people. And it is normal to want to have a family and to plan a future. But, do it as safely and as responsibly as possible. Because, at the end of the day we hope for a healthy couple and a healthy baby who have a future to look forward to .

In general, the couples I see who want to fall pregnant do not have fertility problems, they have 'transmission troubles' ( i.e. they do not want to infect/reinfect each other). Unfortunately, some gynaecologists respond to this by treating the couple as if they are infertile, which brings in huge (and sometimes unnecessary) costs. It is very important to establish both partners fertility history and her history of pregnancies and any past womb infections to establish if there is any underlying fertility problem.

You should both be examined for any STI's (Sexually Transmitted Infections), and she should have a pap smear to demonstrate a healthy cervix (mouth of the womb) before falling pregnant. Invest in getting your CD4 count up, your Viral Load down, your health improved and ovulation predictable : all these are the important puzzle pieces to put into place before attempting to conceive (fall pregnant).

There are ways to fall pregnant that pose no risk at all to either partner, however, this is a more medical approach and may be expensive. If he is positive and she is not, then you will need to get a sperm sample and have it 'washed' at a laboratory (which may cost around R500) so that the virus is removed and the remaining washed sample is safe. Then, through artificial insemination (AI), the sperm can be introduced into the woman's vagina (see links below). This process offers about a 30% chance of successful conception (ie. falling pregnant). The artificial insemination can be done in a doctor's rooms or at home.

If she is positive and he is negative, artificial insemination can be done without the need for sperm washing. In this case, the man produces a sperm sample into a clean container. This sperm is drawn up into a syringe and introduced into the vagina. The best position for AI is for the woman to be on her hands and knees, shoulders down and hips up high. This helps the sperm to be positioned close to the cervix.

These are really the only methods which put both partners at no risk. All other methods still have a risk, and the risk ranges from low to high. If you are considering falling pregnant this should be carefully discussed with your doctor.

If you are positive:
You need to consider taking ARVs around the time of conception and make sure that your viral load is undetectable (ideally less than 50 copies) so that the chance of you passing the virus to your partner is maximally reduced. (This applies if your partner is positive or negative)

Then, it is an option to consider timed unprotected sex - timed according to her menstrual cycle and ovulation. It is extremely risky to have unprotected sex at unplanned time intervals, you need to spend two to three months charting her periods and temperature ( see links below) so that you have a good idea of her ovulation.

If you are negative: and you opt for unprotected sex, speak to your doctor about the option of using Pre Exposure Prophylaxis (PrEP) and Post Exposure Prophylaxis (PEP) drugs around the time of the unprotected sex. For example, a drug like Truvada taken for a few days around the time of unprotected intercourse may offer protection against infection.

If he is negative and she is positive: it is an option to use a non medicated condom (ie no spermicide contained in the condom) and put a needle through the tip to allow semen transfer.
Or, have protected sex using a non medicated condom and remove the condom in time for ejaculation. This is a very low risk method.

I have been putting together some updated information to be profiled on the website in the next week. This puts me into the position of trying to imagine what it is that you want to read, what information do you look for. What is going to bring you back to the site?

I would love to hear your suggestions, do you have questions, or topics you'd like to see covered? Check out the site http://www.hivsupport.co.za/ . You can email me at drgail@hivsupport.co.za.

Links with helpful info:

sperm washing and freezing: http://www.cryobank.co.za/content/contactUs.html
when am I ovulating? http://www.therainbowbabies.com/HowDoIKnowWhenImOvulating.html

at home insemination (refers to lesbians who are hiv-, but the info still applies)http://www.therainbowbabies.com/At-HomeInsemination.html

safe conception: http://img.thebody.com/legacyAssets/48/16/conception.pdf

Disclosure

2009-09-03T20:16:00.003+02:00

One of the most difficult things you can ever ask of yourself, is to find the courage and the words to tell a loved one that you are HIV positive. It is one of those things that often gets harder the longer you wait, it doesnt get easier.

So, how do you do it?

Well, the first thing to understand, is that disclosure is never going to be easy. You have to anticipate the shock, worry and possible anger that your loved one may display. And of course, always consider the worst case scenario: possible rejection. Prepare yourself for the worst but hope for the best. Understand that he/she has not had the time to digest and mull over the news, and their reaction may be a knee jerk outburst, and not necessarily a true reaction.

Secondly, don't judge your loved one based on imaginery scenarios. A patient once told me that she had been surreptitiously raising the topic of HIV with her spouse. She decided not to disclose to him, because in one of their 'hypothetical' conversations, he had stated that ' I would kill myself if I had HIV'. I explained that this was not fair to him. How many times have we stated things like, ' I dont know what I would do if I had cancer, I think I would die'. When we are dealing with a hypothetical situation, our supposed reaction is also hypothetical, and one that we propose without having to face the reality of dealing with the actual situation. And, so, it is not fair to judge your loved one based on a throw away comment made about an imagined scenario.

hird, work on yourself first. It will be much easier for you to deal with the fallout after your disclosure (be it tears, anger, shock or numbness) if you are at peace with your own status. Acceptance is not an automatic step in the process, for some, it comes quicker than for others. But, it sure will help you to provide the support to your loved one when he/she first hears the news.

To prepare yourself for disclosure, try and imagine the scene: do you want to do it at home or in a public place?
Who will tell them, you or someone else like your doctor?
Are you alone, or have you other people around you like your family or your pastor?
Is it day or night? What day of the week will work the best?
How will you open the topic?
What words will you use?
What reaction do you think is most likely and how will you deal with it?
What if he/she becomes angry or abusive - do you have someone you can go to, a safe place?

Are there subtle ways that you can begin to explore the topic of HIV? For example, watching a program like Soul City or mentioning a newspaper article or discussing a friend who is living with HIV? It is a good way to raise your loved one's awareness, and to get him/her thinking about the issue. However, dont hold him to his response in this hypothetical situation, remember that your question might be loaded, but his answer is not necessarily a true reflection of his reaction to your disclosure.

If it is your child that you are considering disclosing to (be it your status, or hers) it is hard to decide at what age to reveal the truth. In my experience, parents often have a false perception of their child's understanding of the illness. For example, a child who has been ill or is taking medicines every day will reach a stage when she will ask questions about the illness. Why am I taking these medicines Mama, what is wrong with me? When she asks this question, this often the first true indication that she is ready for the answer. We often see this questioning starts at around the age of 7 years, which is usually long before the parent thinks of disclosing.

Parents often don't give their child enough credit and underestimate their maturity and understanding. Children listen and hear, and often will be able to hear the unspoken truth in the silences and the pause. Children who are attending school or watching TV, have an understanding of ARV medications, and may even recognise them.

I had a 13 year old boy who had been on ARVs since he was about 8 years old. He was living with his aunt as both his parents had died. His aunt brought him to me because she could no longer deal with him, he was defiant and had even begun to hit her in anger. I sat down with him alone and asked him about his anger. It became clear that he was incredibly angry with his aunt but did not feel that he could talk to her about it, and suppressed rage was displayed through another channel - violence.

He had begun to suspect his HIV status a couple of years previously. When he had raised the question with his aunt, she had dismissed the topic, or told him it was nonsense, and had on one occasion told him not to worry because it was just TB. Over time, he became mistrusting of her evasive responses to him. So he stopped asking. But he carried the fear and anxiety and all the questions around HIV with him daily. But he could not talk to anyone about it and was aware that it was a horrible secret that he could not reveal. Instead of getting support, encouragement and true information, this young boy's fears and anxiety grew over this shameful secret. When he hit his teenage years he began to rebel by refusing to take his medication. He was angry and bitter and confused and violence became outlet for his frustration.

The above true example is just about the worst outcome a parent can imagine; the loss of your child's trust, the shame he feels living with the secret that is so terrible that no one will talk to him of it, the emotional distress and isolation he has felt while his suspicions have grown.

Disclosure to your child is important, and the earlier the better. When your child reaches an age and starts to ask probing questions, this is an indication that the child is searching for meaning and understanding, and that this child is ready for some, if not all of the truth.

Children respond to honesty, and are often more accepting than adults - they are often unburdoned by the emotional baggage that comes with a stigmatising disease. And they are more sensitive to dishonesty and half truths than adults give them credit for.

It starts with you and it ends with you. I wish you the strength, wisdom and peace you need to tell your loved one.

Disclosure to children : http://www.sajhivmed.org.za/index.php/sajhivmed/article/viewFile/197/135 Book about one woman's journey :http://www.openlypositive.com/what-we-do/books/umzala/ How to tell someone you are HIV+ http://www.safersex.co.za/fact_sheets/200/AIDS%20fact%20sheet%20204%20Telling%20others%20you%20are%20HIV%20Pos.pdf

"Miracle Cure":If it sounds too good to be true, it probably is

2009-08-23T14:31:00.007+02:00

Revivotea's homepage (now with a disclaimer about AIDS treatment)http://www.revivotea.com/

The banning of the advert 21 Aug 09http://www.thestar.co.za/?fSectionId=&fArticleId=nw20090821101751660C364723

TAC calls for tough action : http://www.eyewitnessnews.co.za/articleprog.aspx?

TAC's criticism of the ANC youth league for advertising the tea on its website: http://www.iol.co.za/index.php?et_id=1&click_id=13&art_id=vn20090619051530777C206962

The ANC youth league's home page :http://www.ancyouthleague.org/home/

A linked site claiming that Revivotea is treatment for HIV: http://www.natureproducts.net/Medicine/Revivo.html

In the last few days there has been publicity over the banning of advertisements for Revivotea, a chinese herbal tea which claims to have benefits for HIV and AIDS. The Advertising Standards Authority ruled on 21st August that the claims that this tea could treat HIV or cure it had no scientific basis.

A number of links are posted at the top of the blog - go and check this out yourself. This makes an excellent case for informed decision making. The internet is jammed full of websites claiming to offer natural products, or chinese products which can cure HIV. Just like the Ponzi scheme milked a lot of rich folks of millions of rands: if it sounds to good to be true, then it probably is.

I have had a number of patients ask me if a particular product really is a cure for HIV. Here are a few tips of mine to scrutinise a product/website to see if it may be reliable:

1) If the product claims to cure, then it's dodgy. Believe me, if there really was a cure for HIV, and a potential to make money from it - then it would be all over the media. Why would somebody who holds a cure to HIV only be peddling their wares on a website?
2) Check out the English and the terminology used - if this is a badly translated version of a chinese website, then treat it with scepticism. A truly scientific, reputable product will use clear and correct terminology. Also look out for vague but fantastic claims ; "miracle cure" '"Wonder drug" "Natural cure". These are not scientific terms, they are marketing ploys.
3) If the product is to be bought online: remember, somebody is making a profit and it is in their interests to make the product sound incredible.
4) Look for the contact details and 'About us' section - funny how it seems that alot of the dodgier products are only interested to sell you the product. They do not offer any form of customer service line, no option to email them for information, no details about who the people are. No contact details, no information? Dont fall for it.
5) Look at the science quoted: it is very easy to make your product appear scientific. Most people do not have the medical background to interpret scientific results and be able to critically appraise the validity of a claim. Look for the publication title (eg Journal of Acquired Immune Deficiency), often there will be no journal or publication listed at all. Look for vague claims of "we have tested hundreds of patients" or " our research showed that product x reduced HIV". Valid research will be referenced, will have defined numbers, measurable outcomes and logical conclusions. Finally, research it yourself. Use a site like SUMSEARCH http://sumsearch.uthscsa.edu/ and put in keywords to pull out scientific publications from a number of reputable locations.
Check out this link to the Revivotea website with a pseudoscientific claim that traditional chinese medicine can control HIV http://www.revivotea.com/research/36-research/5 3-effects-of-traditional-chinese-medicine-on-cd4--t-cell-counts-and-hiv-viral-loads-during-structured-treatment-interruption-in-highly-active-antiretroviral-therapy
6) Remember that the internet does not have an advertising standards authority. This means that anyone can mak e a claim on a website to offer a 'miracle cure'. There is no watchdog that tests these claims before it is published on the net.
(Where's the harm in fake AIDS cures: http://www.avert.org/cure-for-aids.htm)
7) Just because a product has a patent doesnt mean it has been proven effective. You can patent anything. Patenting simply protects your ownership of the product, it has nothing to do with the effectiveness of it. Check out this patent of silver device as a 'cure for AIDS' :http://www.scribd.com/doc/17224378/AIDS-CURE-US-Patent-5676977

The fear of starting treatment is worse than the treatment itself

2009-08-16T12:36:00.007+02:00

http://www.tac.org.za/documents/arvsinourlives.pdf

http://www.csa.za.org/article/articleview/377/1/1/

A number of people I see are deeply fearful and nervous to take medication for HIV. I'm not at all surprised, in fact I think it is quite understandable given all the bad press ARVs have received over the last number of years. Thabo Mbeki's government certainly contributed to the misinformation and stigma around treating HIV but, it goes further than that.

Imagine I were to tell you you have cancer. Everybody knows that chemotherapy is very potent and that you may lose your hair and vomit and may become really sick from the drugs themselves. A lot of HIV positive people think that this is true of ARV medication too. There are stories of ARV's being deadly and toxic, and stories of ill health starting within days of starting treatment. They are stories and so you should always provide a healthy dose of scepticism to these sensationalist tales. But, the converse applies too - and you should question your doctor about the medication, make sure that you are satisfied that you have been informed of the possibilities, learned about the side effects and the benefits.

I often say to my patients that starting ARVs is nowhere near as scary as the anticipation. This is because that in the anticipation there are all the 'What Ifs' - what if I have a bad reaction, what if I get sick, what if I am allergic, What if the drugs kill me? These possibilities are so much scarier than actually taking the pills and it is easy to get bogged down in the fear of treatment.

Indeed ARV medications do have side effects and do take some getting used to. But then, even Disprin and cough syrup have side effects. The difference is, that few doctors warn you of the potential side effects of cough syrup when they prescribe medicine for your cold. Doctors who treat HIV are very aware of the stigma and the myths, and take more time to counsel and inform patients. The perceived greater risk of side effects from ARVs is largely because counselling about side effects of 'regularly used' medications is rarely offered. Not because the danger isn't there. If you do get side effects, they are usually temporary and will subside once your body gets used to the drugs. In most cases, you can continue your ARVs with minimal discomfort and wait for the side effects to disappear. In other cases, you may require medicine to help to control the side effects. And in a very small number of cases, your doctor may stop your treatment.

Another fear people have, is that they will not be able to take their medication 'on time'. It is true that the stricter you can be in taking your medicine on time, the longer the drugs will remain effective and hence, the longer you are likely to remain well. I find that most patients cope really well with taking their medicine on time - it is simply a matter of forming the habit from the beginning. For example, if I interview you for a job and inform you that you are required to be at work at 8 am and leave at 4 pm, it is unlikely to send you into the throes of panic is it? You accept that in order for you to get the job and succeed in the position, then you will need to be at work on time. Yes, it does give you the inconvenience of dealing with traffic, and costs on petrol, and you can't meet a friend for breakfast during the week. But, the job opens up freedoms to you too - personal achievement, financial security, career growth.

Now, it is the same for taking ARVs - yes you are required to take them on time which does restrict you somewhat, but for the gain in health, the return to independence from illness, the ability to make future plans, isnt it worth it?

Anybody who requires medication for their health - diabetics, hypertensives, epileptics, people living with HIV; has to overcome the fear of taking medicine. You cannot win a competition that you have not entered for, and so, you cannot experience the health reforming benefits of ARVs if you are too afraid to try them.

TB or not TB ? Do you have it?

2009-08-10T19:17:00.008+02:00

http://www.who.int/tb/publications/2006/tbhiv_recommendations.pdf

TB goes hand in hand with HIV. That's a fact. Up to 75 % of people diagnosed with TB are also found to be HIV +. A person who is HIV positive lives daily with a 10 fold increased risk in developing TB.

Trying to figure out whether an HIV positive person has TB though, is more difficult and this is where it gets tricky. The healthy immune system responds to any foreign invasion like infections and isolates the invader and destroys it. HIV changes the way the immune system responds to infections, and the more advanced your HIV is, the more dysfunctional your immune system becomes.

What this means, is that it effectively becomes easier for infections and bugs to sneak into your body and take up residence without your immune system realising it. TB is one of these so termed 'opportunistic infections' that pounce on a weakened immune system. So, not only is it more likely for you to become infected with TB, it also becomes more difficult to detect it.

Throughout the world, after decades of studies and experience, we are still battling to figure out exactly what the best way to diagnose TB is. The traditional tests that we rely on, require the isolation of the TB bacteria from tissue or body fluid specimens (like sputum). Once the bacteria is positively identified on sputum for example, the person is termed smear positive or sputum positive for TB.

HIV makes this more difficult, and healthcare workers face the battle of diagnosing TB without a positive specimen - termed smear negative TB. The more advanced the HIV, the greater the chance that all laboratory tests will come back negative for TB. This does not mean that you do not have TB though - all it means is that TB was not found in that particular specimen. You see how TB is a master of disguise?

To diagnose TB in advanced HIV ( a CD4 of less than 200 cells/ul) requires experience, knowledge of TB diagnositc guidelines, a high index of suspicion, and a low threshold to start TB treatment.

What do you need to look out for, you ask? Well, if your CD4 count is less than 200 cells, you are at high risk for TB. If you have the following symptoms TB should be sought out in your body (and this can be absolutely anywhere in the body, not just in the chest):
significant weight loss (a change in dress size/belt size) that may have occurred over many months, night time fevers (hot body), chest pain, abdominal pain, diarrhoea, persistent headache.

You may even have been to your health care provider repeatedly for similar problems, and still not improved. You may have been tested for TB, and told that the tests are negative. You may even have had an Xray. But remember, a health care provider can never tell you that 'you do not have TB'. All they can conclusively say, is that 'we could not find TB in the specimens we looked at', which may mean that you have TB in the body, but it is undetected.

I find certain tests to be extremely useful to assist me to diagnose TB in patients like this: three blood tests - the Full Blood Count, the Erythrocyte Sedimentation Rate, and the C-Reactive Protein. Additionally, I find an abdominal ultrasound and chest xray will often help me to find the circumstancial evidence I need to diagnose TB.

TB can be cured, this we know. But, our current knowledge and expertise still makes it incredibly difficult to diagnose TB. You cannot cure what you have not diagnosed. My message to you: if you are continuously unwell (whether you are on ARV's or not) and are losing weight - ask your doctor to look for TB again, and again. And in some circumstances, starting TB treatment will prove that it was there - because you will get better after starting the medications.

Want to learn more about smear negative Tuberculosis? http://www.who.int/tb/publications/2006/tbhiv_recommendations.pdf

Life's Passion

2009-08-06T16:44:00.002+02:00

Everybody should have a passion, instrumental in discovering a meaning in life. I found my passion working as a newly qualified doctor in Limpopo. I volunteered for the HIV clinic that was just being started up. This was before South Africans had access to HIV treatment, in the days when HIV was a condition that meant certain suffering, death and the inescapable loss of hopes, dreams and the future of young, vibrant personalities.
It is there that I learned what I like to call the ‘power of panado’ – the ability to provide simple solutions: medications like paracetamol, information on good nutrition and supplements, a listening ear and a warm hand; and to transform it into powerful healing and soothing. I learned about holistic care. I saw people who were dying and helped them to die with dignity and grace, but I also raged at the frustration, knowing that there was potential life changing treatment available, but only to those with money.
When the South African ARV Roll out began mid 2004 I was there to roll out the red carpet, and have been treating people ever since – the infected newborn baby whose mum’s worst nightmare has come true; the pregnant mum who wishes to protect her baby from HIV and be there to see her child matriculate; the father who is fighting to remain healthy so that he can work and support his family; the widow whose family has been destroyed by HIV.
The message I carry is one of hope and encouragement. Over the last 20 years we have seen HIV go from a death sentence to a chronic disease with a normal life expectancy. And, I want that transformation to come to all South Africans – those diagnosed with and living with HIV, and those caring for and are affected by HIV. Namely, you.
This website is about support, understanding, encouragement and hope. This website is about South Africans, about South African issues and South African peculiarities of the HIV epidemic. There are plenty of websites out there, but one has to pick and squeeze the appropriate information for the South African living with HIV, because the websites are almost all foreign.
To the Western world, TB is a scary and uncommon disease – here in South Africa, it is incredibly common, and in fact loves to piggy back on HIV and cause disease here. To the Western World, drugs like D4t (Stavudine) are reserved for salvage regimens because it has been replaced by less toxic drugs – here in South Africa, if you are attending a state clinic, D4T is the most likely drug you will receive.
In the Western World, HIV + pregnancies are few in number, managed with triple therapy and anxiously monitored. Here in South Africa, where approximately one third of pregnant women are HIV+, we deal with enormous numbers of pregnant HIV positive women every year – one doctor in SA can see as many pregnant women in one year that an Infectious Disease specialist will see in a lifetime in America.
That’s another issue: in the Western World, HIV is treated in specialist centres by Infectious Disease specialist physicians. Here in South Africa, we do not have the luxury of treating all HIV positive people in specialist centres. We are looking at a nurse driven roll out programme in order for the enormous demand for care to be met.
So, how is this website going to work you may ask. Well, this is a humble start – to spread the word, to let South Africans know that there is a place for you to turn to. This site will give updates and information that is relevant to you sitting in your home in South Africa. It will have an online support group (a work in progress) which you can participate in and remain as anonymous as you like.
It will give you access to experts in the fields of HIV medicine, chronic diseases related to HIV, lifestyle and holistic care, counselling and social support, and the best experts of all; those who have live with HIV every day. Above all, it is there to reach out to you and into your home, to the privacy and comfort of your own space, to allow you to meet and share your stories with likeminded people. No stigma, no strings attached.
I would love to hear from you, whether its questions, suggestions, criticism (constructive please) or simply your thoughts, put them down, send me a mail, or comment on the blog. It’s all about expressing yourself. If you have a story that you’d like to share, let me know, I am interested in your personal stories, your experiences, your triumphs, and your personal growth – let others gain inspiration from your life. Share it.
In addition, we will be bringing special offers and getting some sponsors on board to help the site grow and establish itself as the first port of call for HIV support.