First reactions – (On being Diagnosed HIV+) – Living positively with HIV.

By Alan Brand, 01 December 2015 (Article for World AIDS Day 2015)

People react in many different ways when they hear that they have HIV. You might carry on as if nothing has happened, you may search out lots of information, or you might find it difficult to accept the news.

You may blame yourself. But HIV does not infect people because they ‘deserve it’ – having HIV does not mean you are a wicked, immoral or stupid person.

Most people get HIV from a sexual partner. You might not have known about HIV at the time, or not thought you were at risk, or you might have decided not to worry about it for once. All these are very normal, human things to do.

You may blame someone else. If you think you know who passed HIV on to you, you may understandably feel angry with them.

But they may not realise that they have HIV. Very often, HIV is passed on by people who have only had it for a few months themselves, usually without knowing.

Or they may have known and not told you. Perhaps things would be better if they had done. But many people are afraid of telling others, because they feel ashamed, or are worried about being rejected. It’s not easy to tell. We’ll look at how to tell other people later. 

Keeping an eye on your health

You can’t tell from someone’s physical appearance, if they have HIV or not. And you can’t always know how good their health is. But blood tests can show how HIV is affecting your health. Whether or not you are taking treatment, it’s important to have some tests done regularly.

One important test is called a CD4 count and is a measure of the strength of your immune system. A low CD4 count means that HIV is damaging your immune system. A higher CD4 count shows that your immune system is stronger. Another test is called a viral load. It’s a measure of the amount of HIV in a sample of blood. If you are taking treatment, the viral load test shows how well your treatment is working – the lower it is the better.

Have these tests done every 4 to 5 months. They will help you and your doctor make decisions about your health and treatment.

Quick guide to test results:

CD4 counts (An important monitor to determine when to embark on treatment as it measures the strength of your immune health)

·         Between 500 and 1200 = usual for people who do not have HIV

·         Above 350 = HIV treatment is not usually recommended

·         Below 350 = HIV treatment is recommended

·         Below 200 = There is a higher risk of illness and infections, so HIV treatment is recommended

Your doctor may give your CD4 results as a percentage

·         Above 29% = similar to CD4 count of above 500

·         Below 14% = similar to a CD4 count of below 200

Viral Load (An important monitor to determine how well your ARV treatment is working as it measures the amount of HIV in a sample of blood)

·         Between 100,000 and 1 million = High

·         Between 10,000 = for people with HIV not on treatment, this is low

·         Below 50 = known as an “undetectable” viral load. The aim of HIV treatment is to have an undetectable viral load also known as viral suppression.

IMPORTANT POINTS:

·         CD4 and Viral load tests give essential information about the effects HIV is having on your immune health and hence your bodies response to infections and illness.

·         The aim of HIV treatment is to have a very low (or undetectable) viral load and a high CD4

·         When the CD4 count is low, the viral load is usually high. This situation is not good.

·         When the CD4 count is high, the viral load is usually low. This is much better.

·         If your CD4 count has dropped to 350 or below, it is recommended that you start ARV treatment.

·         The result of treatment should be that the CD4 is going up, and the viral load is going right down to undetectable levels.

HIV treatment

HIV treatment involves taking tablets (ARV’s) once or twice a day. ARV treatment stops the virus from reproducing and reduces the amount of HIV inside your body. If there is less HIV, there is less damage to your immune system, and you are less likely to get ill.

And if there is less HIV in your body fluids, you are less likely to pass on HIV (for example to a sexual partner, or to your unborn child during pregnancy).

The aim of HIV treatment is to have an ‘undetectable’ viral load – this means there is only a tiny amount of HIV in the body. ARV treatment is not a cure – they cannot totally wipe out HIV from your body.

HIV treatment helps you stay well by reducing the amount of HIV in the body. All ant-HIV drugs (ARV) try to prevent HIV infecting new cells. But different types of drugs do this in different ways. A combination of two to three different types of drugs provides a powerful attack on HIV. The aim of treatment is an “undetectable viral load” – very low levels of HIV in the blood.

Should I take HIV treatment?

Not everybody with HIV chooses to take anti-HIV drugs straightaway. Treatment will usually be recommended:

·         if your CD4 count is below 350,

·         if HIV is making you ill,

·         if you have another health condition such as hepatitis or TB,

·         if you are pregnant, or

·         if you want to take it in order to reduce the risk of passing HIV on to a sexual partner.

N.B: By knowing your status early you will give yourself enough time to find out about your options and make the right decisions in time.

Taking drugs on time

HIV treatment only works well if it is taken exactly as prescribed.

This is often called ‘adherence’, and it means taking the drugs:

·         at the right times,

·         at the right dose, and

·         following any advice about food and drink.

The nurses, pharmacists and doctors at your clinic can help you with this. You may need to develop a routine that helps you remember to take the drugs at the same time each day.

If you sometimes forget to take your pills, the drugs you are taking may stop working properly. If this happens you would need to change your treatment.

KEY POINTS ON ADHERANCE:

·         It is essential to take all your doses of HIV treatment at the right times and in the right amounts.

·         Taking anti-HIV (ARV’s) drugs regularly will mean that there is always enough of the drug in your body. This will keep HIV under control.

·         Not taking ARV’s as prescribed can result in HIV becoming resistant to the drug treatment choice you are on and can result in HIV being harder to treat in the future.

Looking after your health

As for anyone else, taking care of your health involves more than popping pills.

It will also help if you can:

·         Getting sufficient rest and sleep is important so that you can wind down and strengthen your immune system.

·         Eating a balanced diet to maintain a healthy weight gives you energy and ensures that you get the nutrients your body needs.

·         Get some exercise, which is good for the heart, lungs, circulation and mobility.

·         Give up smoking, if you are a smoker.

·         Talk to people and seek support (isolation and stress are bad for your health too).

As well as improving your physical health, all these things are good for your feelings and emotional wellbeing. For example, exercise can make you feel more relaxed and energised.

During difficult times, you may find that you use more alcohol or drugs. They may help you to forget, or to stop thinking about things. While they may offer temporary relief, relying on them is likely to make your feelings harder to deal with in the long run. Too much drink or drug use usually brings its own problems.

Seven ways to look after your health:

1.     Eat a balanced healthy diet

2.     Get some exercise

3.     If you are a smoker consider giving up smoking

4.     Get enough rest and sleep

5.     Talk to people and get a support for example: join a support group.

6.     Attending your clinic appointments and have regular blood tests.

7.     Take anti-HIV (ARV) drugs, if your blood tests show that you need to. 

Stigma and Discrimination - Obstacles to an Effective HIV and AIDS Response - World AIDS Day Message 2013

By Alan Brand 

Introduction

“Getting to Zero", I am of the opinion that Stigma is the final battle front in the war on HIV and AIDS. We have made unbelievable strides in care and treatment. Treatment as prevention (TASP) is in our hands, used correctly we can achieve the objective of "Zero New Infections" and soon "Zero AIDS Related Deaths" will become a reality, it is not impossible to have a vision of an AIDS free future! However, all these efforts will fail if we do not overcome stigma and discrimination. Getting to an 'AIDS Free Future' will require strong political will, effort and commitment from all if we wish to succeed and reach the target of "Getting to Zero Stigma and Discrimination". This final frontier must be overcome now! We cannot afford not to! Without wiping out stigma ....HIV and AIDS will continue to spread and the AIDS related deaths will continue unabated!  

             

Let us first reflect back on the past.

Acquired Immune Deficiency Syndrome (AIDS). I first heard those words more than 25 years ago. But it wasn't until eight years later; when I heard the following words from my doctor “your HIV test has come back positive”, that the reality of what it meant really hit me. By that time more than 4million South African’s had contracted HIV, and many thousands had died of AIDS. The disease had become real for me and for my colleagues in virtually every corner of the country.

So much about HIV/AIDS and the epidemic has changed since then. Yet one thing has not changed nearly enough -- HIV is now, as it was in 1980’s, the most stigmatised disease in South African society.

In the 1980’s, the stigma attached to HIV, while undeserved, was at least a little more understandable. We knew very little about the disease then. Fears of being infected from kissing, holding hands or sharing a cup with someone with HIV was still common.

Doctors and patients were scrambling to stir up scientific research programs that in many ways had been slow to respond. Despite a rapidly expanding caseload, there was very little reliable medical or scientific information about the virus, how it was transmitted, or what could be done to treat it.

In fact, effective HIV treatments were virtually non-existent at that time. The few medicines that were being used were no match for the virus,  treatments quickly became ineffective as resistance to these drugs occured. The treatment regimens often involved so many pills and such severe side effects that many people felt that taking their medicines every day was as difficult as the disease itself.

Too often, being HIV positive meant having to cope on your own. It wasn't uncommon for doctors and other healthcare workers to refuse to see patients who they knew were HIV positive. Social workers, lay counsellors and activists around the country responded at that time, and services for many people began, gradually, to improve.

The situation today is very different. We now know how HIV is transmitted, and we know how to prevent infection. Scientists have learned how HIV attacks the body's immune system, what its weaknesses are and how to exploit them. They've even mapped out the virus's genetic structure.

HIV treatments have also improved dramatically in recent years. With the introduction of powerful new drugs in the mid-1990s, HIV/AIDS death rates began to drop for the first time since the start of the epidemic. More recently, treatments that require fewer pills and cause fewer side effects have begun to help people with HIV/AIDS live longer, healthier and fulfilled lives. Thanks to these advances in care, HIV is well established as a chronic but medically manageable condition.

Support services for people with HIV have also improved. In practically every city across the country you will find community organisations and groups dedicated to helping ensure that HIV positive individuals get the care and support they need and deserve.

Yet, despite all this progress, the terrible stigma associated with HIV and AIDS continues unabated. Isolation, fear and shame continue to cloud this diagnosis of an HIV status for many.

What's worse is that the stigma surrounding HIV actually helps to perpetuate the epidemic. Most of the over six million South African’s estimated to be infected with HIV don't even know they have the virus. The cause of this reality is not ignorance as much as it is fear of rejection and discrimination. Each year, thousands of people who have contracted HIV do not get tested out of fear that an HIV positive diagnosis will mean a life of isolation and discrimination.

Misinformation accelerates the spread of HIV in communities across the Southern Africa, particularly among minority and poorer populations that already suffer more than their share of prejudice and discrimination. Despite progress in so many other areas, HIV infection rates continue to grow.

We can't afford to let another 20 years go by before we separate the myths surrounding HIV and AIDS from the reality. It's time we started seeing the disease for what it is: a serious communicable disease that is both avoidable and although still incurable has become very treatable and manageable. We need more open and frank education and more community leadership to address this epidemic. We must also target resources to address the changing demographics of the disease, so that information and education programs can be tailored to the audiences that need them most.

Finally, people living with HIV/AIDS must have access to the medical care, prevention and treatment information they need. Research advances have meant that more and more people with HIV are living full, normal lives. It's time that the human progress in how we handle HIV/AIDS in our community begins to match the advances being made in the research lab.

Give the following questions some thought:

Question 1:

Has the message about HIV/AIDS over the past 30 years helped or increased stigma and discrimination around HIV/AIDS? Consider the following:

• Today, people with HIV are still stigmatised and continue to face many forms of discrimination.
• Some people are refused employment or membership of employee benefit schemes.
• Some people are refused proper health care and equal membership of medical schemes, or their children are victimised at schools. 
• Many people are tested for HIV in our hospitals without giving informed consent, or are told about their HIV status without receiving proper counselling.
• Breaches (breaking of) of confidentiality and privacy happen almost every day.

Questions 2:

Why does stigma and discrimination help spread HIV? Consider the following: 

• Is it who and what you are that puts you at high risk of contracting HIV, or 
• Is it behaviour that puts you at greater risk          

Questions 3:

How do we stop discrimination? Consider the following:

• Can the law help?
• Does having a constitution help?
• Does having knowledge help?

Today, we know that stigma and discrimination has helped the spread of HIV. Discrimination has made it easy for people to blame others without protecting themselves. Instead of campaigns that educate everyone in our society, people have been taught to believe that HIV infection only happens to gay people, prostitutes and ‘people who sleep around’. If you are not gay, a prostitute, or promiscuous you are ‘safe’. This is not true.

Key points:

• Types of behaviour, not groups of people, put you at risk of HIV infection. 
• For as long as people with HIV continue to face discrimination, people will be afraid to volunteer for an HIV test,
• This means that it will be more likely that they will unknowingly pass HIV on to other people.
• Unless people are encourages to come forward freely to tell others about their HIV status, ignorance and misunderstanding about HIV and who is affected by it will continue.

Discrimination is prejudice in action!

The non-legal definition of prejudice is “Preconceived judgments or decision; unreasonable predilection or objection; esp. an opinion or leaning adverse to anything without just grounds or before sufficient knowledge.”

Now that is a bit complicated so I am going to simplify it down to “illogical reaction to fears of anything outside ourselves”.   And, yes, people often have prejudices even when they have been presented with the facts that point to the fears being groundless.

The list of prejudices dreamed up by the public and especially public figures, educators, clerics, generals, and politicians is almost endless. Just about any complaint that has been thought of has soon had its associated prejudice.

In the First and Second World War hatred of Germans was considered national pride, even though a great percentage of the people who founded the United States were German.  In fact, In the USA, English as the national language won over German by just a few votes!

In the Second World War hatred of Japanese was even more irrational.  Driven by movies and the press, that hatred came to a fever pitch during the WW11.  Those of Japanese descent and Japanese on American soil were rounded up, thrown into concentration camps, and deprived of their land and possessions.  Amazingly enough, this did not happen to those of German descent!  Talk about irrational.

Now people in the United States can’t get enough of Japanese cars, computers, electronics, etc.  And they admire the German people for their cars, military, clean living, etc.  Talk about irrational.  But there it is: once the threat is past, all the bad things we perceived about the “enemy” are forgotten.

Prejudice and fear?

The best example of how prejudices, fuelled by fear creates myths and illogical reactions is the story of “Juliana’s cloth disease” of Tanzania.

The story goes as follows:

A handsome Ugandan trader arrived selling cloth for women’s kangas with a sort after patterned named Juliana. A village girl with no money traded sex for a kanga, as did several other women who converted the beautiful Juliana patterned cloth into a wrap or kanga. Some months later the first girl became sick: she had no appetite, could hold down no food, and had constant diarrhoea, which filled her with shame. In a few weeks she wasted away, grey and weak, and had to be carried everywhere. Before she died, two other women, also adorned in Juliana’s cloth, came down with the same strange disease. The people of Lukunya decided that the Ugandan was a witch, and that the Juliana cloth had evil powers. To conquer Juliana’s disease, traditional healers toiled to lift the stranger’s curse. But the curse was too powerful and the death toll continued to rise. Within a year the curse had spread to the neighbouring villages. Rumours of widespread witchcraft spread through the Kagera region, and traditional healers felt compelled to solve the Juliana mystery. (Garrett, 1995:334-335)

In 1995 doctors identified that the reported cases of wasting disease (“Juliana’s disease”) in Kagera, Tanzania as AIDS cases, based on comparisons with published symptoms in the medical journals in the U.S.

However the story does illustrate how people can experience the world in a unique and very specific way that is different from the way in which others experience it. Understanding these beliefs and not simply laughing them off as silly prejudices that result from ignorance is critical to our ability to address HIV and AIDS prevention messages in Africa.

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Below is an exert taken from Alan’s recently published book called, “Positively Alive” published by Jacana, 2005 which is available at Exclusive Books.

Positively Alive

I remember the first World AIDS Day celebration that I attended in 1998. A number of HIV/AIDS organisation rallied together to commemorate the event at Zoo Lake in Johannesburg. It was only a small gathering of people but the event made a huge impact on me at the time. Beautiful, haunting music was being played from a car radio. The event was more a memorial ceremony than a celebration. As the sun set, a prayer was said and everyone was given the opportunity to light floating candles. These were then placed on the lake in memory of loved ones that had died of AIDS. As I watched, I was struck by an overwhelming sense of the hopelessness and loss that each candle represented. To make matters worse a gentle breeze was blowing and as each candle was placed on the water it would simply flicker and die. Hands reach out to try and keep them protected from the breeze. A few managed to be re-lit only to quickly fade and sink beneath the water. The entire event reflected the hopelessness and lack of ability to do anything for those infected at that point in time.

In this time of despair, I was forced to consider the purpose of my life. As I began to examine my belief structures I entered into a holistic approach to health through the crisis of this terminal illness. I have learnt so much and become a far more spiritually mature person.

So much has changed since 1998. HIV is now classified as a chronic manageable disease with continuing improvements in the availability of medical treatment. Much more is known about the effects of balanced nutrition in relation to maintaining a healthy immune system. The effect that stress has on the individuals’ ability to heal is well documented.

The HI virus, however, continues to affect millions of people throughout the world. The traumas experienced by so many people infected by HIV and AIDS indicates that health is generated by a balance of the emotional, psychological and spiritual aspects that form the core of who we are.  In the same way that my being HIV-positive has brought a crisis into my family so the planetary family is facing the same crisis of HIV. We will never be able to overcome this epidemic by individual responses. By begin to think of ourselves as united in our efforts – firstly healing ourselves – and then our relationship to each other; we can embrace the reality of healing our planet. If it is true that, “AIDS is, indeed a virus that thrives on “victim” consciousness, fear responses and isolation” - Caroline M. Myss then surely love with compassion and acceptance will go along way in helping those affected by HIV and AIDS to remain ‘Positively Alive’.

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Contact Alan Brand from Positively Alive should you wish to inquire about a quotation to host the accredited workplace related employee wellness and training modules at your workplace, these courses are facilitated by Alan Brand from Positively Alive, and   include amongst others the highly successful: “Mitigation of HIV and AIDS related stigma & discrimination in the workplace – Training Module”.

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Alan Brand

POSITIVELY ALIVE ^cc

Employee Wellness Consultant and Specialist Trainer

Website: www.positivelyalive.co.za

1 December 2012 - WORLD AIDS DAY

GETTING TO ZERO

Working Together for an AIDS-Free Generation

   12 Million South Africans have tested and know their HIV status!

By knowing your status you too can be a part of the solution and contribute towards GETTING TO ZERO…

Zero New HIV Infections

Zero Discrimination

Zero AIDS Related Deaths

Alan Brand 

POSITIVELY ALIVE ^cc

Employee Wellness Consultant and Specialist Trainer

CK2010/00285/23

Mobile: +27 (82) 453-0560

Direct Line: +27 (11) 482-5605

Fax to mail: 086 245 6833

E-mail: albrand@iafrica.com

Website: www.positivelyalive.co.za

Focus on the positives and lets make this World AIDS Day "AYOBA"

Published in the 2010 World AIDS Day edition of The Ripple Effect.

Written by: Alan Brand (Guest Editor)

At a recent conference I was asked by a delegate why after so many years and after so much manpower, money and investment, medically, emotionally and scientifically we are still not stemming the tide of HIV and AIDS. It must be mentioned that the person who asked the question is very active in the fight against HIV and has dedicated her time and efforts to educate and assist those infected by the disease. It was with a sense of exhaustion and from being emotionally overwhelmed that she asked the question. I do not believe that I was ready to answer the question at the time, but already a seed was busy germinating in my mind and heart, one which I have not been able to express fully until now. It seems that this concept has finally come to fully blossom and IT IS AYOBA!

Consider the sense of goodwill, joy and wellbeing experienced and expressed during the 2010 World Cup by both South Africans and the international guests. Even the prophets of doom and gloom had to bite their tongues and concede that their predictions had failed and we had achieved something to be truly proud of. Not only did serious crime incidence drop in South Africa during the world cup but this was the experience around the world.

Here are some quotes proving the effects that the positive energy had in South Africa and internationally:

Nepalese capital Kathmandu recorded a drop in crime and accidents since the start of the 2010 FIFA World Cup™ - police recorded 156 incidents of crime in the month of June, compared with 497 reports during two weeks preceding the tournament, Kantipur newspaper reported.

The Business Consumer Index (BCI) rose by 2.8 index points to 84.8 points in June, says the South African Chamber of Commerce and Industry. The 2010 FIFA World Cup™ tournament raised positive sentiment domestically and internationally. The success of the tournament could boost domestic business confidence despite indications that the global economy may suffer a depressed economic outlook for the medium term," said the Chamber. (Sacci)

The total number of foreign tourists to South Africa during the 2010 FIFA World Cup™ might be close to 400 000, says consultancy Grant Thornton, with higher than expected African air arrivals and huge numbers from countries whose teams did well contributing to the figure.

Now consider the reality of HIV/AIDS in sub-Saharan Africa and how easy it is to fall into the trap of becoming a profit of doom when we focus on the statistics and history of the epidemic. How much energy have we spent on promoting the negative, highlighting our failure to stem the tide and putting the spotlight on the lack of political will, slow implementation and access to treatment and prevention of mother to child transmission of HIV and AIDS? I can go on and on and on and IT IS NOT AYOBA. No wonder that all this negative messaging contributes towards a sense of hopelessness and inadequacy in the collective and individual conscience of all South Africans and for that matter the entire sub-Saharan African region.

From the point of view that recognises the basic “laws of attraction” that operates within each person’s life and the universe as a whole is it at all not surprising then that these negative messages have acted as a “magnetic field” influencing the effectiveness of HIV and AIDS awareness and interventions to date?

The time has come to stop the negative energy and messages around HIV and AIDS as surely by now we must be aware that it has not been a successful tool in preventing the spread of the epidemic. I believe that all it has done is make people, institutions and governments feel so overwhelmed that the only possible response is one of denial, apathy and inactivity.

The South African CAPRISA presentation received a standing ovation (a rare medical conference occurrence) at the 2010 World AIDS Conference in Vienna for its study on the tenofovir gel spermicide. Another hot conference topic was test-and-treat as a public health method for curtailing the pandemic resulting in many attendees of the 2010 World AIDS Conference headed home feeling optimistic about the future of the HIV/AIDS pandemic.

South Africa has the largest number of people accessing ARV’s in the world. It is further estimated that 2.3 million life-years have been added due to introduction of antiretroviral therapy in sub-Saharan Africa during 1996–2008

Indications are that, between 2006 and 2010, South Africa is experiencing the plateau of the HIV curve with positive indications, that this trend will continue and a reduction in new infections will be a reality of the future.

By emphasising the successes and the reality that we have not yet been defeated, we can and will be victorious in the war against the HI virus. We no longer need to be pessimistic and in tribute and honour to the many that have died we owe it to our children and the future to rise above the “can’t do attitude” and boldly raise our hearts and minds as we spend energy and our collective intellectual capacity to a united, focused political will as we continuing the positive achievements. 2010 has the potential to herald a new era of innovation in fighting the virus.

On a personal note, working with Positively Alive©, a support group for HIV positive men in South Africa, I can testify that members, including myself, in the past did not consider a future and the potential of growing old, they are having to reconsider their futures as with access to treatment and care they are not only living healthy full and complete lives with HIV but are able to engage in relationships without putting others at risk of infection and have to consider the real possibility that they have the potential to reach all and any future dreams and aspirations. AND THAT IS TRULY AYOBA!