In 1981 a new disease came into the spotlight. No one knew where it had come from or even how it was spread. Professionals feared it and the public stigmatised it, yet even today after 30 years people still fear it and people still stigmatise it, however back then it was a death sentence and the early treatment was fraught with severe side effects and viral resistance.
This disease that by 2009 had infected an estimated 33.3 million people worldwide would come to be known as AIDS.
Several vaccine trials have been tried and failed but due to the HIV’s enormous variability no vaccine has yet been found. Today we have come to understand HIV and how to live with it, the drugs used can offer most people a ‘normal’ life, however the health systems biggest barrier is trying to get the people of today to get tested, there is still fear among people about having an HIV blood test and yet this could be the one factor that could lower the 25% of people who still die from AIDS.
AIDS came to light following a large number of cases of Pneumocystis carinii pneumonia (PCP) and Kaposi's Sarcoma (KS) both of which were relatively rare. KS a disease generally found in the older generation, and usually a benign form of cancer, was presenting itself as a much more aggressive malignant skin cancer. Many people were unsure of what to call this new disease, some referred to it as GRID (gay related immune deficiency) or “Gay Cancer” others referred to it simply as AID (acquired immunodeficiency disease), it was not until realisation that not just the gay community were affected, but heterosexual people and drug users as well that it was given the official name of AIDS.
In 1983 the first isolation of a retrovirus from an AIDS case occurred. Dr. Luc Montagnier of the Pasteur Institute in Paris isolated LAV retrovirus (Lymphadenopathy associated virus). This was quickly followed in 1984 by Dr Robert Gallo of the National Cancer Institute when he isolated HTLV-III (Human T-Cell Lymphotropic Virus III retrovirus). It was not until 1986 that the term HIV would be coined after it was found that LAV and HTLV-III were the same virus and the cause of AIDS. Along with this discovery came the first blood test to screen for HIV, it was called the Elisa Test.
The media would come to be involved heavily in the evolution of HIV. During the 80s famous faces began appearing and by the mid 90s several of them had succumbed to AIDS.
2 October 1985 - Rock Hudson, died of AIDS shortly after making his diagnosis public on July 25, 1985, thus becoming the first major public figure to announce that he had AIDS.
4 February 1987 - The pianist Liberace died of AIDS.
1989 - Amanda Blake (Miss Kitty of Gunsmoke) died of AIDS related throat cancer.
24 November 1991 - Freddie Mercury died from bronchopneumonia induced by AIDS a day after announcing to the public he had been HIV positive for 'some time'.
1992 - Anthony Perkins (Norman Bates of Hitchcock's Psycho) died of pneumonia brought on by AIDS.
1992 - Robert Reed (Mike Brady of The Brady Bunch) died of intestinal cancer and complications of AIDS.
1994 - Dack Rambo (Jack Ewing of Dallas) died of complications of AIDS.
It was during 1987 that the UK government decided to stand up and make people aware of the dangers of this deadly disease possibly in the hopes of containing what they anticipated to be an impending epidemic, it was by way of a public information poster and leaflet shock campaign, leaflets were sent to every home and posters entitled ‘AIDS – Don’t die of ignorance’ were on view to the public everywhere. The BBC and ITV broadcasted a short public information film in nearly every ad break and television was to show programmes dedicated to the use of condoms.
During the noughties the battle of stigma, discrimination and the legal rights of people living with HIV were tackled head on, the first trial for the reckless transmission of HIV was held in 2001 and Global Campaigns were set up such as NAT’s 2003 ‘Are you HIV Prejudiced?’ campaign.
In 2005 Royal Assent was given to the Disability Discrimination Act giving Legal protection to people who were HIV positive to stop discrimination in places such as the workplace.
However the number of people living with HIV in the UK continued to rise and was estimated in 2006 at 73,000 this climbed to an estimated 91,500 by 2010.
During the early 80s AIDS was a death sentence, only time would tell how long you could survive, no drugs had been found to fight it and the best therapy was palliative, this changed however on 20th March 1987 with the approval of a new drug called AZT, however it was found to be unpredictable and caused severe side effects and long term use eventually lead to viral resistance. it would be another 8 years before another drug known as a Protese Inhibitor was found that would make a substantial difference to an infected person.
Throughout the 90s the number of people contracting HIV in the UK was on the rise it was to go from 1,000 in 1987 to 10,000 in 1995 with over 25,000 living with the disease. In 1991 10 million people worldwide were HIV-positive. Death rates due to HIV were not to fall until 1997 with the advent of HAART (Highly Active Antiretroviral Therapy) in 1996 where a minimum of three drugs were combined lowering the chances of viral resistance.
The HIV infection destroys the CD4 T-Helper Cells, diagnosis of transition to AIDS is usually confirmed by CD4+ T cell counts and also the level of HIV RNA in the blood, when CD4 levels drop below a certain amount (decided by health advisor) determines when treatment can begin.
Most patients fall prey to the opportunistic infections that HIV infection allows into the body, simply because the immune system is not alerted to their presence these include:
PCP (Pneumocystic Pneumonia)
KS (Kaposi Sarcoma)
Toxoplasmosis
HIV Encephalopathy Tuberculosis
Non-Hodgkin's Lymphoma
Peripheral Neuropathy
Herpes Simplex
Candidiasis
Cytomegalovirus
Myobacterium Tuberculosis
In a patient with a normal functioning immune system the majority of these diseases would not occur or could be dealt with efficiently.
Living with AIDS is not all about disease management and control it is also about the cost of living with the status of your illness. The social stigma can leave people isolated with no one to talk to, thus leading to depression and feelings of being an outsider and many people associate HIV with a negative stigma such as drug users and the gay community. There is also physical and mental debilitation, the immune system being severely compromised can leave the patient severely ill after a simple common cold.
The Red Cross and NHS interviewed HIV patients and broadcast videos online in a bid to bring knowledge of what being a sufferer really feels like. These are a few of their words.
It is important to remember that HIV is not always a death sentence, it can be managed and controlled and the support available is better than it has ever been. There are today many charities and campaigns set up such as the Terrence Higgins Trust, National AIDS Trust, Red Cross and World AIDS Day, all there to fight the anguish, loneliness and hopelessness that many HIV patients feel.
Hopefully we will eventually stamp out the memories of those stigmatic 80s when simple ignorance and misunderstanding left the AIDS sufferer alone with no hope.
Living with AIDS is not all about disease management and control it is also about the cost of living with the status of your illness. The social stigma can leave people isolated with no one to talk to, thus leading to depression and feelings of being an outsider and many people associate HIV with a negative stigma such as drug users and the gay community. There is also physical and mental debilitation, the immune system being severely compromised can leave the patient severely ill after a simple common cold.
The Red Cross and NHS interviewed HIV patients and broadcast videos online in a bid to bring knowledge of what being a sufferer really feels like. These are a few of their words.
“When the Dr told me I was HIV positive, it was terrifying, it was like dying but not being dead, I haven’t told my family, I don’t think they could deal with it......I just feel...so completely on my own”
“The words you’re HIV positive, there’s nothing manageable about that...I hadn’t come out to my family as being gay so that made it even harder, cause first of all my parents knew I was positive and then I’ve got to tell them I’m gay...I’d only been in 2 relationships at the time...it can happen to anyone it’s not just a gay disease”
“I discovered I had HIV by chance in 1985 back then it was death sentence...I had a two minute appointment with the consultant, who said “You have got hepatitis B and HIV. Go away and enjoy yourself but don’t have sex” I was just 18 and it didn’t seem real...I met my wife Caroline in 1989 and we married in 1990...Having HIV is not the end of the world, although I do have dark moments, especially if things go wrong...the more people are open about HIV, the less stigma there will be"
Hopefully we will eventually stamp out the memories of those stigmatic 80s when simple ignorance and misunderstanding left the AIDS sufferer alone with no hope.
"if you hide your HIV status in a dark corner, that’s where you’ll feel you are"
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