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A growing problem | Testing
Counselling and support |
Find out more
Five years ago, Tom Spiers was enjoying Mardi Gras, a summertime gay and lesbian festival in Manchester. He noticed someone staring at him and they got talking. The stranger was from New Zealand and due to fly home the next day, but they ended up having a one-night stand.
The next day, when leaving the hotel, the stranger told Tom he was HIV-positive.
Not surprisingly, Tom was angry and terrified. 'I realised that we hadn't used a condom,' he says. 'I had to wait the three months development period before I could go for an HIV and STD test.'
With no interpreter and no counselling, the doctor wrote down the word 'positive' for Tom to read.
HIV (Human Immunodeficiency Virus) causes AIDS (Acquired Immunodeficiency Syndrome), a disease that destroys the body's ability to fight infection.
Once the HIV virus enters the body, it seeks out a type of white blood cell called a helper T-lymphocyte, which usually defends the body against infection. The virus kills the T-lymphocyte and releases billions of copies of itself back into the blood. The copies of the virus attach themselves to new T-lymphocytes, and so the infection grows and spreads.
The body manages to keep producing enough T-lymphocytes to keep the immune system working properly for a time. But eventually – sometimes as much as 15 years later – the body can't keep up with the HIV virus, the immune system stops working and the person becomes susceptible to other infections which would not normally make them ill. This failure of the immune system is AIDS.
There are approximately 41,000 people living with HIV/AIDS in the UK, and since the first outbreak in 1981 there have been 15,000 deaths here as a result of the virus. It is estimated that, since 1987, 57 deaf people have died from AIDS. Around 100 deaf people are HIV- positive.
HIV/AIDS may have largely disappeared from the headlines, but cases in the UK are reported to be growing by almost 10% a year. Young people in their 20s and 30s are most at risk through unprotected sex and, among intravenous drug users, by sharing needles. In 2002, 63% of all people infected with HIV in the UK were infected during unprotected sex with someone of the opposite sex.
Blood tests for HIV are very accurate, but the test used in most UK hospitals only detects the virus once it has become established, which is about three months after infection.
Anyone taking an HIV test should be informed of all the implications and have a chance to talk things through if they want to. HIV-positive status can have a massive effect on a life and on relationships, so people need to be prepared. See Counselling and support below.
Testing can be done either by a GP (family doctor) or in a specialist GUM (Genito-Urinary Medicine) clinic. You should be aware that your regular doctor may be asked to disclose details of test results to insurance companies and others making health checks on an individual – though not without the individual's consent – and this could, for example, affect a life- insurance policy. For maximum confidentiality, you might prefer to have a test at a GUM clinic. You can visit a GUM clinic without having to see your doctor first.
If you're pregnant, you should be offered an HIV test as part of routine care. If you are found to be HIV positive, there are things you can do to reduce the chances of your baby being infected. For example: you and your baby can be given antiretroviral drugs; you can have the child by caesarean section; and you can avoid breastfeeding. See Find out more for sources of more advice and information.
When Tom Spiers found out that he was HIV-positive, he told no one – not even his closest mates – for a whole year. 'Then I felt down for months, so I told my close friends,' he says. 'Later on, I told my family. They were shocked at first but then they accepted it. They've really supported me a lot.'
Tom thinks counselling would have been very helpful, but he didn't want it at the time. 'I was angry with myself for weeks and weeks and weeks,' he says. 'I didn't want counselling. I wanted to pretend that it hadn't happened.'
Despite some funding problems, the British Deaf Association Counselling Service (BDACS – see Find out more) provides counselling for a number of clients who have HIV/AIDS.
They can also guide clients in the right direction for appropriate support when considering an HIV test. The BDACS evolved from AIDS AHEAD, which was set up in 1987 to provide HIV services for deaf people.
More services are needed, Tom believes. 'I am very disappointed that there are no deaf group discussions about HIV. And we need more interpreters who are experienced in the area of HIV/AIDS.'
Mike Hawthorne, who is also HIV-positive, agrees. He thinks there should be a website or e-group set up for deaf people, so they can support each other. He also believes there should be more visual information, and more information in BSL, about safe sex.
What do you think? Let us know on the message board.
Contacts
British Deaf Association Health and Counselling Services
13 Wilson Patten Street
Warrington
Cheshire WA1 1PG
Voice: 01925 652520 (10am-4pm daily)
Textphone: 01925 652529 (10am-4pm daily and Wednesday 7-10pm)
Fax: 01925 652526
E-mail: counselling@bda.org.uk
Website: www.bda.org.uk
Supports deaf people with HIV/AIDS, their partners and families and provides
a buddy service.
Terrence Higgins Trust Direct Helpline
52-54 Grays Inn Road
London WC1X 8JU
Voice: 0845 1221 200
Fax: 020 7242 0121
E-mail: info@tht.org.uk
Website: www.tht.org.uk
Information, support and services on HIV and AIDS.
Links
aids.org
www.aids.org
An education charity that aims to make access to HIV and AIDS information
on the internet faster, easier and more accurate. It provides a wealth of information,
factsheets and a community discussion group.
Aidsmap
www.aidsmap.com
This site is produced in collaboration with the British HIV Association
and the International HIV/AIDS Alliance. Find information on many aspects of
HIV and AIDS including new treatment options and research.
Avert
www.avert.org
Information on HIV/AIDS prevention, testing and treatment options, plus
the latest HIV/AIDS news.
Channel 4 Health: Sexual Health
www.channel4.com/health/microsites/H/health/
magazine/sex/health_main.html
Features and practical information about all aspects of sexual health, including
'Living with HIV – Teens Speak Out'.
Crusaid
www.crusaid.org.uk
A UK charity devoted to fundraising on behalf of people living with HIV
and AIDS. The site includes information on events and how you can help.
Joint United Nations programme on HIV/AIDS
www.unaids.org
Includes information on campaigns and publications.
NationalAIDS Trust
www.nat.org.uk
The National AIDS Trust works for policies that will prevent HIV transmission,
improve access to treatment and challenge HIV stigma and discrimination. Includes
links to other useful sites.
Playing Safely (NHS)
www.playingsafely.co.uk
Lots of information about HIV, AIDS, sexually transmitted infections and
sexual health, including contact details for GUM clinics.
Public Health Laboratory Service
www.phls.org.uk/topics_az/hiv_and_sti/
hiv/hiv.htm
Part of the UK's new Health Protection Agency. The site contains general
HIV and AIDS information and guidance.
Society of Health Advisers in Sexually Transmitted Diseases
www.shastd.org.uk/sti/infectio.htm
Information on sexually transmitted infections including HIV/AIDS.
World Health Organisation (WHO)
www.who.int/hiv/en
A wide range of information on the worldwide AIDS/HIV situation including
facts & figures and publications.
Books
The Guide to Living with HIV Infection: Developed at the Johns Hopkins AIDS
Clinic by John G Bartlett, Ann K Finkbeiner (The Johns Hopkins University
Press 2001)
A guide to living with HIV infection and to the treatment available. Buy
this book from Amazon.
HIV/AIDS: Practical, Medical & Spiritual Guidelines for Daily Living
When You're HIV Positive by Mark Jenkins (Hazelden Information & Educational
Services 2000)
A pocket guide offering medical information and practical approaches for dealing
with the challenges of having AIDS. Buy
this book from Amazon.
Serenity: Support and Guidance for People with HIV, Their Families, Friends
and Caregivers by Paul Reed (Celestial Arts 1987)
Explores the emotional turmoil of someone facing HIV/AIDS and offers ways of
coping with it. Buy
this book from Amazon.
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