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One World, One People

Thandi Haruperi urges everyone to override their differences and unite together against one common enemy.

In the last issue (137) of Positive Nation, Mark Ward from the haemophiliacs campaign organisation, Tainted Blood wrote:

“Every December our thoughts focus on the misery, suffering and horrors caused by HIV. The media highlights sufferers throughout Africa and the gay community. Whilst acknowledging fully the dreadful suffering that these communities have faced, we at Tainted Blood would like to highlight another, smaller, community that is often overlooked: more than 800 haemophiliacs have already died as a result of receiving blood products contaminated with HIV, and many others live with the virus. We remember the widows still searching for answers. We think about the hundreds of children orphaned. We work to raise awareness of the battles faced by terrified haemophiliacs still fighting for justice in Britain whilst surviving each day with multiple viruses.

My prayer is one day the Black, and other Minority Ethnic communities affected with HIV and AIDS find the strength and courage to galvanise themselves and join up with - and learn from - both the haemophiliac and gay communities and all our allies who remain sensitive to the plight of Africa and its children, to make this change happen.�

Whether you’re black, white, gay or heterosexual, life is precious. Families and communities have been torn apart by fear and ignorance. Many feel the cruel hand of prejudice and those not infected have been attacked and labelled. Their lives, already so difficult as haemophiliacs, were often rendered unbearable following the knowledge that the blood products used to treat them had left them with a terrible legacy”

As a member of the African community, Mark’s sentiments resonate with me as I honestly identify with the challenges he presented in his article. I would like to paint my world for him as I also share my pain.
All of us living with HIV have tainted blood and the devastation of HIV is no more or less difficult regardless of how HIV was transmitted. As such, idealistic as it may seem, I beg us all to group together and fight HIV as the common enemy;

• We too remember the widows, widowers, husbands, wives, parents and children still searching for answers.
• We don’t only think about the hundreds of children orphaned. We live with them – the few that have been ‘lucky’. Most are ‘forgotten’ children managing on their own - children looking after other children; with some living on the streets, covered in card boxes at night for shelter.
• We work to raise awareness of the battles faced by people living with HIV as we continue to fight for mere survival; with Access to Treatment for All still but a promise. We have not even began to mobilise ourselves to fight for justices.
• Black (and gay) people carry the label of HIV more than anyone else in this world, regardless of the continent we are in.

Worse still, this ferocious fire does not show signs of abating:
• For the Haemophiliac Society and in “first world” societies in general, we hope the problem has been stemmed and addressed through blood screening, needle exchange problems etc
• For Africans and other “third world” communities unfortunately HIV is more than a personal health and social concern. It is a political and developmental concern that threatens to reverse whatever gains have been achieved post-colonialism. Here HIV also threatens the population with extinction.

In what I call the new apartheid, HIV is re-recreating the divide between first and third worlds � the blacks and white. Those of us affected with HIV have learnt to come together and be together in spite of and because of our differences�

Whilst “The media highlights sufferers throughout Africa and the gay community” the issue of infections have not been fully or fairly explored or communicated in the media - what we get is a lot of negative and ‘poor them’ media coverage.

We have HIV-positive children whose biological mothers are HIV-negative. We have HIV positive people whose spouses have tested HIV-negative. We have families where everyone is infected. Could it be the case that the whole family has used the same healthcare setting? Taking a Libyan case in 1998 as an example, “the children visited the same hospital 1-6 times; at each visit, invasive procedures with potential blood transmission of virus were performed” (Yerly S, et al 2001). So far this has been the largest documented outbreak of nosocomial HIV transmission. Yerly S, et al 2001.

The academic reports that document these iatrogenic and Nosocomial infections of children and adults being infected within healthcare settings remain within a very small and exclusive domain; beyond that not much if anything has been done.

Whilst HIV can thrive on promiscuity, in the African community the virus has indiscriminately attacked all sections of the population regardless of sexual behaviour, experience, lifestyle, class or gender. The blame for the epidemic lies at the feet of the African man. Like gay people, their African sexualities have historically been constructed as deviant which probably gives the rationale and excuse for not looking into these issues deeply.

For Africa, UNAIDS reports show around 90% infections are heterosexually transmitted. UK epidemiological data backs this up claiming that most of new diagnoses in the UK are “heterosexual transmissions acquired abroad, mainly in Africa”. This data fails to highlight the fact that as these infections are ‘imported’ from regions where the environment may be medically and politically unhealthy, there could be other factors to consider, besides people’s sexual behaviours that are responsible for these infections. Unlike the UK, where blood has been screened for HIV since 1991, can the same be confidently assumed for poor resources settings?

Yet despite these arguments that only 2.5% of Africa’s infections are through unsafe medical care, it is interesting to note that the same international agencies instruct their staff and families working in third world regions to “carry their own needle supplies,be aware of safe blood points and ensure that blood transfusions are performed only when absolutely necessary”. The US National Centre for Infectious Diseases, when issuing travel guidance, acknowledges that “the blood supply in low-income countries might not be adequately screened”.
Even accepting the claim that only 2.5% of Africa’s infections are through unsafe medical care, working backwards over the last 25 years or so, how many infections and deaths could have been potentially avoided?

Only a few months ago in January 2008, the UK government admitted to fears of ‘contaminated’ blood when it was reported that “British troops and civilian workers may have been given blood that had not been properly screened for infections like HIV and Hepatitis” (Sky News, Thursday January 10, 2008). The soldiers were seriously injured in Iraq or Afghanistan and given transfusions using batches of blood sourced from the American military as part of their emergency treatment

Following this report, the Americans admitted failing to follow their own testing procedures when eighteen soldiers had received emergency transfusions while in Afghanistan and Iraq. The Health Protection Agency confirmed that a further six civilian contractors may also have been exposed to the blood, which came from the US military.

One can only begin to imagine how much of this has contributed to the African epidemic. You only have to hear the stories of the nurses who worked in Africa to understand the levels of unsafe practices that went on within the healthcare systems.

It is therefore not surprising that there are people out there whose diagnosis does not make sense (like the widows in the haemophiliac society). Imagine the child who was either born with HIV from an unaware mother, or who caught HIV through a contaminated injection. Fast forward 15 years later when this person (who is by now a young adult) is diagnosed with HIV. The automatic assumption is that they have been engaging in (promiscuous) sex. The same applies to the man or woman who got a contaminated blood transfusion or injection and unwittingly passed it onto their partner; or the pregnant woman who got ante-natally infected through a contaminated injection and is now facing questions from her HIV-negative husband, who feels ‘cheated’ on!

As these people who caught HIV through “other means” (in Africa) have gone on to have sex with their partners, inadvertently passing on HIV, all evidence of original source has since been destroyed, absolving the relevant parties of all responsibility of the infections and leaving individuals to deal with the consequences of their ‘irresponsibility’. Instead they are left with the responsibility of behaving themselves or face criminalisation for negligence. Very unfair, considering no-one has criminalised the governments for their part of negligence.

In the light of these observations, what I find problematic is how this conclusion is arrived at in the absence of any baseline data showing what one’s HIV status was at point of first sexual experience.

• As most people are diagnosed when they are sexually experienced, how do these ‘experts’ know we got our infections sexually without knowing what our HIV status was before our first sexual encounters?
• In the presence of that baseline data, what other variables and questions are used to gather information
and in whose interest is this information gathered?
• As statistics show high rates of HIV in women and young people, could there be a possibility that this is because these are the primary groups (women and babies) that use healthcare services more and as
such have higher exposure to healthcare infections?

Could this explain the HIV diagnoses that make no sense to most people because there is no unfaithfulness?
Our friends here in the west have not only been good at asking pertinent questions, they also believe in fighting for justice and getting authorities to own up to their responsibilities. As a result we see examples of Canada’s new government announcing a C$1bn ($875m) compensation package for thousands of people infected with hepatitis C from tainted blood. And this compensation is only for those people who got the disease between 1986 and 1990. We are watching the space for the UK findings.

We also know that health inequalities - unequal distribution of resources have only served to fuel this epidemic amongst Black and Ethnic Minority (BME) communities wherever they are – be it at home or abroad.

With almost EACH and EVERY family in the southern quadrant of Africa affected by HIV and AIDS, it is worrying that governments are still dumping all responsibility and blame on individuals when there is a lot they are responsible for.

In Zambia today, we have the mother to child transmission prevention (MTCP) strategies of encouraging exclusive breastfeeding for six months. The reason for this is because “it was realised that it was too expensive for mothers to feed their babies using formula. It was also discovered that among formula-fed babies there was a high incidence of death from diarrhoeal and other water-borne diseases as access to clean water in some communities is almost non-existent” (http://ibfan-africa.org/).

This wouldn’t be tolerated in the UK. In fact an HIV-positive mother breastfeeding her baby would have her baby taken away under children protection laws.

Writing in issue 135 of Positive Nation, in his article Second Class Citizens Brian West argues that we must stop dumping second hand drugs in Africa and on the world’s poor. He lamented on the sad fact that, “We have sat back and watched as drugs become commonly used in poorer countries that we wouldn’t touch with a bargepole ourselves. We have made people in Africa and Asia second-class citizens by handing them out second hand drugs.”

Second class citizens indeed! In what I call the new apartheid, HIV is re-recreating the divide between first and third worlds – the blacks and white. Those of us affected with HIV have learnt to come together and be together in spite of and because of our differences, HIV has brought us together. However on a wider political scale the international integration is backsliding as racial landscape is reversed; the integration that had begun to truly happen as BME communities fused into mainstream western society is now seriously under threat as these groups become identified for being vectors of disease and health tourists. The romantic and matrimonial freedom that people had begun to enjoy as black and white people came together in love is being slowed down as the fence of HIV raises to separate them; Most Africans now carry the fear and responsibility of bringing HIV into their mixed relationships – They are also increasing becoming revered for being messengers of HIV - the potential for criminalisation leaves me crippled with fear.

Governments indeed have the power to change things, but only when held accountable by their people.

The challenge of whether any evidence of governmental neglect can be found also depends on whether affected people and their allies have the will and strength to mount a legal case to force their governments to respond with a different mindset.

Africans and other BME communities unfortunately have not seriously begun to engage in the debate – our legal case remains weak as any attempts to raise it are fobbed off as us wanting to heap blame on the west or a denial of our irresponsible predatory and deviant sexual nature.

Too many lives have been lost and far too many relationships broken as a result of something, somewhere, somehow, having gone wrong. To acknowledge that apologies are due would be a good place to start not just to the Haemophilia Society, but other communities as well. Whilst it would not bring back any of our loved ones, it could count towards the process of making sense of the situations; why and how they happened and to expedite the processes of healing.

My prayer is one day the Black, and other Minority Ethnic communities affected with HIV and AIDS find the strength and courage to galvanise themselves and join up with and learn from both the haemophiliac and gay communities and all our allies who remain sensitive to the plight of Africa and its children, to make this change happen. Hopefully then can respect and pride in us be restored and justice be found and healing begin. PN

Iatrogenic: Due to the action of a physician or a therapy the doctor prescribed. An iatrogenic disease may be inadvertently caused by a physician or surgeon or by a medical or surgical treatment or a diagnostic procedure.

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