Saturday, 1 December 2012

The Colour Red

"Be the change you wish to see in the world."
(Mahatma Gandhi)

Today, I pinned on a small red ribbon with frayed ages and a rusty little safety pin with a great deal of reflection and also some pride, even though I would be spending most of the day at home. I have done this on the same date with the same red ribbon for many years now. 1st December each year has been World AIDS Day since 1988. HIV / AIDS (Human Immunodeficiency Virus infection / Acquired Immunodeficiency Syndrome) was first clinically observed some years before, in 1981. In 1990, the New York based "Visual AIDS Artists Caucus" created a visual symbol to demonstrate compassion for people living with AIDS and those caring for them. Inspired by the yellow ribbons honouring American soldiers serving in the Gulf war, they chose the colour red for its:"connection to blood and the idea of passion -- not only anger, but love." It may sound trite, even odd if I say that I have a tender spot for AIDS: becoming involved with people affected by, living and dying with AIDS changed my little world and made me a stronger and, I believe, nicer person.
The Terrence Higgins Trust is a UK-based charity that was formed in London in 1982, named after one of the first named people to die from AIDS disease in the UK. It was formed by his partner and friends in an attempt to both personalise and publicise the disease. Many years ago, I was a voluntary carer and fundraiser with THT after my best friend at that time, a gentle and funny gay male nurse named John, took his own life to escape the stigma of what was then a deadly diagnosis. He was 21; he had apparently contracted the virus from his first and only boyfriend.
As a carer, I helped in a donated "safe house" in South London, where shelter, support and eventually palliative care was offered to up to four people at a time living with AIDS; where family was unaware, absent or unsympathetic. Treatment was less effective then and awareness about the condition and it's transmission was tainted by scandal and bigotry. My day-job colleagues didn't want to know exactly what I did in "that house" and my mother and sister couldn't understand why I did it. We fed and bathed, medicated and cleaned, emptied bed-pans. We were there. I drooped after a couple of years and following the deaths of all those I had been helping to look after; many house volunteers had been there longer and were still there when I left. It was at times heart-wrenching and scary; to this day, it remains the best, finest thing I've ever done.
In most parts of the developed world, HIV / AIDS is no longer the graphically painful but rapid death sentence it once was. Yet AIDS  is still a global pandemic: by 2010, around 35 million people had contracted the disease worldwide. Since it's recognition in 1981, more than 32 million men, women and children across the globe have died from what was initially dubbed "a gay plague" by the media. It's estimated that 3.4 million of those currently infected are under fifteen years of age. South Africa presently has the largest population of people living with HIV / AIDS, nearly six million. In sub-Saharan Africa, life expectancy in the worst affected countries has fallen drastically: from 65 to 35 years in Botswana. South East Asia is the second most affected region, estimating at least 4 million cases. Infections in the Middle East and North Africa have risen by more than a third over the past decade, with a notable rise in new infections also recorded in eastern Europe. In the USA and also across the UK, it's believed that a quarter of all those infected are unaware of their status. AIDS is the sixth leading cause of death among men and women aged 25 - 44 in the States. It may take you 10 minutes to read this blog entry; every 10 minutes, someone in the States is infected by the HIV virus.
Many campaign groups say the original stigma associated with HIV / AIDS remains as big a problem as the disease itself. In China, there are reports of  some hospitals turning away people with HIV infections and refusing surgery for patients who test positive for the virus. In vulnerable communities such as Ethiopia and Zambia, reported abuse of people living with HIV / AIDS remains high. Nearly half of all countries do not have laws in place that protect people living with the virus from discrimination. The AIDS Healthcare Foundation in Nigeria admits that anti-AIDS bigotry is still rife in a country where the disease is a taboo, commonly seen as a death sentence as "punishment". It is a fact that there is still no cure for AIDS: it is always fatal without treatment.
In the States, most patients who survive many years after diagnosis do so because of the availability of a combination of highly active antiretroviral therapy (HAART). The antiretrovirals suppress the replication of the virus in the body, allowing the helper blood cells precious time to rebuild the immune system. As a suppressant rather than a cure, HAART has been very effective for the past decade. However, the virus can become resistant to any one combination of HAART medications at any time, although genetic tests are largely available to determine whether an HIV strain is resistant to a particular drug. New medicines are still being developed to treat HAART resistant HIV. And treatment with HAART as a collection of different medications has it's own collection of complications and side effects: diarrhea, nausea, sickness and general weakness. When used over an extended period of time, these medications also increase the risk of heart attack. Of course, people responding to antiretroviral treatment can still pass on the virus through sex or shared needles; to date, there is still no vaccine against HIV. Ultimately, prevention truly is the only cure at this time.
In 2011, the United Nations signed the Political Declaration on HIV/AIDS, as a strategy to achieve universal access to HIV prevention, treatment, and care by 2015. The document marks an historic milestone on the road-map to the beginning of the end of AIDS. We need to reach 15 million people living with HIV with antiretroviral treatment by 2015: this has to be achievable; HAART therapy has already saved an estimated 14 million life years in low and middle income countries. However, around 7 million people known to be eligible for this treatment are still unable to access it. Recognised foreign aid has traditionally been the major source of funding to fight the epidemic worldwide, but for the first time in history, the UN has reported significant domestic investments by lower income countries to address their own HIV / AIDS situations. Each World Aids Day should be a time of remembrance but also of celebration of any progress and acceleration of response in recent years. We have to believe that ending this epidemic is as feasible as it is certainly affordable. 
Progressive medications can help the human body to heal and maybe even protect itself from this virus, but we also need to eliminate the enduring stigma and discrimination against people living with and affected by the disease. Fear and ignorance continue to undermine efforts to provide services to prevent, diagnose, and treat HIV/AIDS. Current restrictions on the entry, stay, and residence of people living with HIV in many countries lack scientific basis and are often relics of the media-fueled terror dating from early in the epidemic. This is a virus, a disease; as essentially associated with blood as anemia, sickle cell and leukemia, as identifiable with "behaviours" as diabetes, lung cancer and heart disease. It's been repeated endlessly over the past decades that the virus itself is a stranger to discrimination or preference. Personally, I can vividly recall pushing a beautiful but visibly fragile young man in a wheelchair to local shops only to find that ordinary people with their children in tow and shopping in hand felt moved to spit at both of us and wish him a speedier death. I pray this no longer happens on the streets of south London; I extend my prayers to the other corners of our world where such distortion of the human spirit is a daily occurrence.

*For John C, Campbell, Carl, Eddie, Hayden, James and Paolo and the others I  was privileged to have known for that short while*

"AIDS occupies such a large part in our awareness because of what it has been taken to represent. It seems the very model of all the catastrophes privileged populations feel await them."
(Susan Sontag)

"The global HIV/AIDS epidemic is an unprecedented crisis that requires an unprecedented response. In particular it requires solidarity -- between the healthy and the sick, between rich and poor, and above all, between richer and poorer nations. We have 30 million orphans already. How many more do we have to get, to wake up?"
(Kofi Annan)

"One"  U2

"We're one, but we're not the same;

We get to carry each other
Carry each other"
(Paul Hewson / Bono)

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