What do people in the UK think about HIV / AIDS?
Many people think, because they have been hearing about the AIDS epidemic for so many years, that it's not a problem - they've stopped listening. People seem to assume that the informational campaigns and sex education has worked, and that HIV is only really a danger to high-risk groups of the population, and less of a danger now than in the past.
In its early stages, the epidemic primarily affected gay men, and then injecting drug users and people who had been given infected blood-products in hospitals. Injecting drug users, particularly, were assumed to be at risk from HIV. People formed the opinion that these were the sections of the population which were primarily at risk, and that opinion seems to have lasted. More recently, the media has focused on the severe epidemic in Africa, and on HIV positive immigrants entering the UK. Many people seem to think that they're not at risk from HIV - which is why new infections continue to occur.
In fact, all sections of the population are at risk from HIV. Amongst drug users, apart from localised explosions which quickly died out, there was no severe epidemic in the UK .
At the moment, gay men remain in the highest risk group for HIV transmission. However, heterosexual transmission of HIV has increased so rapidly that the number of heterosexually acquired infections has overtaken the number acquired by men who have sex with men. Heterosexual infection is now the main route of HIV transmission, although many of the heterosexual infections being diagnosed in the UK are amongst people who may have acquired the virus in another country. 56% of people diagnosed with HIV in 2003 were men and 44% women, and this gap has been narrowing rapidly over recent years.
Some areas of London already have infection rates of over 1%.
Many people think there is a cure for AIDS. In 1987, it was reported that a drug called azidothymidine (AZT) slowed down the onset of AIDS. Every now and then, the media reports news of another 'AIDS drug', and many people seem to think that the disease can be successfully treated indefinitely by doctors. In 1999, a survey found that 20% of people thought that there was a 'cure for AIDS'.
In fact it is true that HIV can be successfully kept at bay for many years with anti-retroviral medication, but some strains of HIV are becoming resistant to the medicines used to treat it, meaning that new drug combinations need to be continually developed. Also, in many cases the medication can have very unpleasant side-effects, and some people who have been in treatment for a long time have now stopped taking the medicines, feeling that the side-effects of the drugs have made their quality of life so poor that it isn't worth it.
There is still no 'cure' for AIDS.
Many people think that as we enter the third decade of the UK epidemic, HIV isn't a serious problem in the UK. Contrary to popular belief, the epidemic continues to grow, affecting all sections of the population. Many people now believe that the problem of HIV has been solved in the UK, and that it is only a serious issue for Africa and Asia.
In fact, the number of new HIV infections has been rising each year since the early 90s. At the end of 2003, there were an estimated 53,000 adults living with HIV in the UK, of whom 27% did not know they were infected. Of the 21,010 people diagnosed with AIDS in the UK, at least 13,082 had died by the end of 2004. For the past 5 years there have been more than 3,000 new diagnoses of HIV every year, with 6,932 people diagnosed in 2003. This is more than double the number of new infections identified in 1999.
Has AIDS education failed?
Information for the public about HIV / AIDS comes mainly from two different sources; the media and the government. The media disseminates information through newspapers, television and radio, and the government attempts to educate the public directly, sometimes using the media for advertising, sometimes through schools or governmental courses.
When it became clear that the HIV epidemic wasn't going to go away, the government in the UK embarked on a campaign of educating the public. In the early months of 1986, the government launched the first public information campaign - 'Don't aid AIDS', although there was still disagreement over the name of the virus. The next year the government launched a leaflet campaign, targeting every household in the UK with the 'AIDS - Don't Die of Ignorance' slogan. There was an 'AIDS week' in the media, and the subject received a lot of television and radio coverage. Princess Diana opened the first specialist hospital, and the press made note of the fact that she didn't wear protective gloves when shaking hands with AIDS patients - indicating the strength of the prejudice still felt towards people affected by the disease.
At the start of the epidemic, the media covered stories about gay men and drug users becoming HIV positive, implying that in some way they were to blame for their infection. Meanwhile, newspapers portrayed people who had been infected from blood products as innocent victims of a plague spread by the reprehensible behaviour of others. HIV became seen as something that made people seem 'dirty', and the popular misunderstandings about transmission increased prejudice. Many people who are HIV positive still experience discrimination, both socially and in the medical profession.
During the early years, the media fuelled these fears, with stories about people being attacked with needles or deliberately infected through sex.
In secondary schools, sex education was not a compulsory part of the curriculum, and in those schools where it was taught it was often inadequate, looking at little more than 'how babies are made'. This did not equip young people to protect themselves from infection or to appreciate the need for safe sex.
In 1987, Tabloid newspapers were outraged that some sex education still discussed gay lifestyles and taught young people about the risks involved in unsafe sex. In America, President Reagan made a speech advocating AIDS education, as long as sexual abstinence was given as the best way of avoiding infection.
In 1988 The government passed its Local Government Act, section 28 of which stated that local authorities were not to in any way 'promote' homosexuality in schools. This reduced even further the scope for sex education, at a time when young gay men were particularly at risk of HIV infection. It is only recently that the legislation was repealed.
Although they denied it, the Tory government showed that their attitudes to sex education were Victorian and repressive. Without debate, the government passed a new Education Act in 1993, which contained an Amendment 63 which made sex and HIV education compulsory in all secondary schools, but gave parents the right to withdraw their children from sex education classes - even if they were over the age of consent.
Again, in 1993 the tabloids promoted moral outrage about sex education, with the 'mars bar parties' story. There was a national outcry in March 1994 after 'Mars Bar parties' (using chocolate bars during oral sex) were explained to Leeds pupils of ten and eleven in response to a question. There were also protests over role play involving "mummy", "daddy" and "mummy's lover". The lesson was by a nurse visiting from the Health Authority. Even today, lobbyists such as the group 'Family and Youth Concern' are against sex education in schools, saying that it is tantamount to child-abuse, a subject which the UK media has recently made highly charged.
In 1994 In the UK, the Department of Health vetoed an AIDS campaign promoting safer sex and condoms, developed at a cost of £2m, on the grounds that it was too explicit. The campaign was developed by the Health Education Authority (a government funded body) who later in the year were banned by the Department of Health from distributing the book, "Your Pocket Guide to Sex". It was aimed at 16 to 25 year olds, giving advice on contraception, HIV and safe sex. The media reacted hysterically, saying that it was encouraging young people to have sex, and the government panicked. They pulped the book and threatened to stop all of their AIDS and sexual health education programmes.
The Department of Education produced a draft circular which suggested that teachers giving contraception advice 'could amount to a criminal offence'.
In 2000, the Learning and Skills Bill removed any responsibility from Local Authorities for sex education in schools, and placed this responsibility on the individual schools' governing bodies and head teachers. The bill also ensured that sex education must emphasise the importance of marriage.
It can be concluded that the hysteria stirred up by the tabloids held up the provision of adequate sex education by a number of years, and even now many young people are still not being taught about the basic mechanics of sex until they are already sexually active. Many STDs, such as chlamydia, are mainly found amongst young people. There is still criticism that sex education in the UK does not start early enough - children often become sexually active before reaching the age of consent - and concentrates too much on biology and not enough on pregnancy, disease transmission and the social aspects of human sexuality. Sex education, which is an area in which children consistently report wanting more information, remains too boring. Some teachers still think that sex education is an embarrassing topic for them, and some students find it embarrassing if they know the teacher.
Ultimately, the problem has not been that sex education has failed, more that adequate sex education has never really been provided.
Even now, it is not only children and young people who need sex and HIV education - adults lack knowledge, too. The Durex Report, 2004found that magazines are the main source of HIV/AIDS information for 25% of people, followed by friends, and the internet at 14%. Doctor and health services are the main source of information for only 2% of the population.
Sex and HIV is a sensitive topic for the government, and they are very afraid of being accused of liberalism or of promoting any sort of sexual activity by informing people about it. By avoiding the issue, however, they have laid themselves open to accusations of negligence.
HIV/AIDS prevention work has another point against it, in the government's eyes - it does not produce numeric results, which the government likes to see, to justify its spending on these matters. HIV prevention cannot produce these figures - it is impossible to say "we spent £30,000 and saved 30 lives" - there is no way to know how many people might have been infected if the work had not been done. Politically, governments prefer to spend money on things that produce results, to look good in the media. This is another example of public relations being more important than public health.
The Way Forward
Recently in the UK there has been a massive increase in the number of heterosexual people testing HIV positive. This increase is mostly due to the immigration of people who were infected in other countries, predominantly sub-Saharan Africa. Certain categories of immigrants are not entitled to AIDS treatment on the NHS , and the government is proposing legislation which will deny help and treatment to even more people in the UK who are not of UK origin - a political decision, rather than an economic one. Another reason for this increase may be partly due to the increase in the number of people being tested - indicating that people are aware of the risks of HIV, but that they still take risks.
There has also been a decline in the number of AIDS cases, as a result of improvements in medication and treatment. This means that people who are HIV positive are living longer, and the corresponding rise in the number of people who are HIV positive means that there is a larger pool of people who are able to transmit the virus than previously.
Teenage pregnancy rates in England have fallen for the third year in a row but the rate among girls younger than 14 has stayed the same despite governmental efforts to reduce it. The government chooses to focus on pregnancy rather than sexual health - perhaps because discussing sexual health makes for uncomfortable sound bites. This is a vivid illustration that sex education for young people is not working.
Transmission of STIs continues to rise, particularly amongst younger people, which indicates that the 'safe sex' message has still not got through. According to the National Survey of Sexual Attitudes and Lifestyles', more people are having more sexual partners, and the age of sexual debut has fallen from 17 to 16. More men sex workers, and more people are having anal sex. Some reasons for this rise in STI transmission may be the increased use of alcohol and drugs, the increased sexualisation of the media, and peer pressure. This indicates that society generally has forgotten the risks of HIV transmission. There has been a slight increase in condom use, but this does not balance the rise in risky behaviour. Sexual health remains an embarrassing subject, and many people are too shy to seek help until obvious poor health compels them to.
More recently, the media has been concerned with stories of HIV positive migrants entering the UK to take advantage of free NHS treatment. This has lead to a huge increase in heterosexual cases of HIV diagnosed in the UK. However, it also has the potential to add to the complacency amongst UK citizens about HIV - giving the impression, once again, that it is only a problem for some other group - in this case, immigrants.
Treatment facilities for STIs and HIV are often overcrowded and inadequate. This dissuades people from going to be tested, and increased waiting lists mean that there is more possibility of onward transmission before people receive treatment. GUM clinics are overwhelmed and under funded, and funding for sexual health and family planning is given a low priority . In recent years the government has recommended that all sexually active women under 26 in the UK be tested for Chlamydia - without providing any extra funding for this huge undertaking. The Chief Medical Officer's end-2003 Annual Report says that waiting times have increased at clinics to the point that 28% of emergencies were not seen within 48 hours, and that 29% of patients with STD symptoms waited for more than two weeks for an appointment.
A visit to a GUM clinic is a crucial opportunity to detect HIV, and the government is recommending that all gay men should be tested. Again, however, no extra cash has been provided, and an estimated 59% of men who have sex with men 'leave the clinic with their disease undiagnosed'.
What needs to be done?
Earlier in the course of the epidemic, the media played a role in warning the public of the dangers of HIV. The Health Education Authority used to have a £30 million budget, some of which was spent on television and billboard advertising, warning the public about the dangers of HIV. Since the abolition of the HEA in 2000, funding now comes from a variety of different government departments and goes to a number of different organisations. It is difficult to get a clear picture of current levels of funding, but it seems clear that it has dropped. Certainly, such high-profile education campaigns are no longer carried out.
Clearly, there needs to be a new governmental commitment to health education, part of which needs to be focused on preventing the transmission of HIV. Currently, there is no emphasis on health education and awareness as part of governmental domestic policy.
Years of underfunding have resulted in a situation where the HIV epidemic in the UK has been allowed to get out of control - due to the government's fear of talking about sex and fear of spending money on anything other than war or high-profile donations to the third world. Certainly, it is ironic that the UK is more likely to pay for AIDS medication for a positive person in Africa than they would if that African person were in the UK.
GUM clinics are unable to cope with the strain of testing people for STIs and treating them, and they lack the resources necessary to address the spread of HIV. More than a quarter of HIV+ people in England remain undiagnosed, and half of HIV+ men who have sex with men had been positive for more than six years before diagnosis - a time gap which allows the infection to be spread to many others. GUM clinics need to offer - and to have the resources to carry out - HIV tests to everyone who attends them, and their waiting times need to be markedly reduced.
According to the national strategy for sexual health the lifetime treatment cost of caring for someone who is HIV positive is estimated to be between £135,000 and £181,000, and that the monetary value of preventing a single onward transmission estimated at between £0.5 million and £1 million, it is clear that money spent on preventing the transmission of HIV would be well spent. More funding is clearly needed for education and early detection, and it is crucial that politicians take this matter into their hands to prevent a worsening of the situation. Health education is often not a popular funding area, because it produces long term, rather than immediate results. Ultimately, however, it can be very cost-effective.
HIV is not other peoples' problem, it's everyone's problem. But there is now no Health Education Authority, and when was the last time you saw an advertisement warning people of the dangers of HIV? The only real sources of information these days are the often-skewed reporting in the media, which focuses on the problems in Africa and Asia.
The UK government, with it's obsession with trying to play a major role on the international stage, is very keen to tell other countries what to do about their own HIV problems. However, in this area as in a number of others, domestic policy suffers at the expense of foreign policy. The UK government spends its time making high-profile moves on the world stage, while people become infected with HIV, and ultimately die, at home. More political leadership is needed from the UK government, and more awareness of the needs of the UK population.
As regards care and treatment for people with HIV, the UK does better than many other countries. It can be faulted for its unwillingness to treat people with HIV / AIDS who are not UK nationals and fall outside the asylum system. The ability of the NHS and its staff to treat people on the basis of their needs is put at risk by legislation concerning their legal status. This is a politically rather than financially motivated decision, as treatment for people who are from outside the UK are who are HIV positive would place a comparatively tiny burden on the Health Service. For example, if a pregnant woman who is not from the UK requires an emergency caesarean section operation, the NHS will happily provide it. If, however, she is HIV positive, it is unclear if she will be given the inexpensive medication which will stop her baby being born HIV positive.
If more effort were put into sexual health education and HIV prevention, there wouldn't be so many HIV positive people requiring care. It seems that sexual health education is still too sensitive a topic to be given the serious national debate it deserves.
Last updated February 24, 2005
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