The social welfare response to HIV/AIDS

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The first official case of AIDS in Britain was recorded in 1983 but nurses said they were caring for unofficial cases before. Similar to America early reports were confined to the homosexual population. When looking at initial attitudes to the disease if we look at the statement provided by Day and Klein the confused nature of the debate comes to light.

” The AIDS epidemic is defined as a case study of the Government forced to cope with uncertainty, moral ambiguity and knowledge that there are no solutions, only ways of limiting damage. “.To return to the initial question, social welfare concerns the social services response in relation to the benefits given to groups of society affected by the epidemic. Watney states “it important to consider the full significance of the Governments continuing failure to support community based health education and care among the social groups most severely affected by HIV disease since 1981”.

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By this he is saying that his belief is that the Government has failed groups in society on social welfare issues of HIV/AIDS up to 1991 when the journal was written but views come from him being a homosexual activist.Controversially, on the other extreme, the conservative Prime Minister Margaret Thatcher who in 1988 tackled the whole problems of AIDS (not just specific aspects like social welfare) at ‘Prime Ministers Questions’ and said; “I think we got it just about right” (Williams 1999:132). This for me seems to relate to the idea that the social welfare extreme in care of the debate beyond the NHS might not be as much as a high priority for the Government and would take a different angle on addressing HIV/AIDS policy looking at prevention and research.

In general, dealing with the debate has been characterized as walking on ‘social egg shells’ because there are so many moral arguments enclosed in the debate. When discussing this essay I have broken down periods of responses to be able to appropriately draw conclusions from the initial responses and where we are today. These periods shall be 1981-1985 with the initial responses, some of the 1986-1989 actions including the activities of a Select Cabinet Committee, the 1990- 1995 legislation for giving sufferers more equal rights and finally to the present day, mainly looking at the conclusions from the All Party Political Group on AIDS.The discussion will respond to ideas that direct social welfare is inadequate; also whether other types of response were adequate such as indirect social welfare and investigating political and social implications on why certain action was not appropriate.

As stated earlier the first documented case of AIDS in Britain occurred in 1983. At this point there wasn’t very much known about the disease, nor was it to be known what the extent was going to be. The initial phase of the disease in early 1980’s is characterized as one of official neglect. AIDS was seen as an illness confined to marginal groups in society such as drug users, hemophiliacs and above all gay men” [Williams 1999:65].

There are a number of opinions that could have been taken on this issue but it seems that it could be taking a view of HIV/AIDS based on “secular individualism, that it is just another disease, albeit a new and dangerous one” [Goss and Smith 1996:78].On the other hand, the constant reference does need to go back to the fact that the disease was against marginal groups and discriminated against and was not appropriately acted upon. However, the Griffiths Report in 1983 stating “the NHS needs the ability to move much more quickly for any medical problem” [Ferlie and Pettigrew 1990:197] relates to the principle that the slow response could simply be due to systems failure and not prejudice or discrimination. A politician, the media or public opinion need to highlight the problem to speed up policy, which was not the case.

Today we have the benefit of hindsight and the NHS can react more quickly in response, but the surprise of such this HIV/AIDS problem and the sensitivity of the debate highlight the difficulties that arose and must still arise in making an appropriate policy. However, sufferers were still cared for in hospitals at this time (even if not that effectively), for free, so there was basic social welfare responses that many other countries did not and still do not offer. In 1985, British AIDS cases got to 250, which was a growth similar to US. There was a cross over into heterosexuals.

Garfield 1996:108].With this in mind the debate started to become more complex. “A distinction is also highly relevant when considering the signals the Government was receiving, was it dealing with a gay plague (i. e. something affecting only a minority, and a stigmatized one at that) or was it dealing with a threat to the lives of the whole population” (Day and Klein 1989:341). The debate really intensified. Thatcher’s belief was that HIV/AIDS was a small problem and confined to gays [Garfield 1996:107] and was a view taken by most of the cabinet.Fowler and Acheson convinced Thatcher in 1986 that an unprecedented preventative campaign would make the public aware of how one could become infected, of HIV prevention and would be the best vaccine we’ve got [Garfield 1996:106].

“The Social Services Committee May 1987 judged the advertisements as fine examples of how important and useful information can fail to be conveyed by poor presentation and advert confusion”[Garfield 1996:108]. This was due to the campaign being discussed at the weekly Home Affairs Committee where people with little knowledge of HIV/AIDS decided what was going to be in it.The prevention campaign resembles an approach of indirect social welfare because it is addressing the nation and has the aim of stopping further cases. It was certainly inadequate, due to the lack of information and confusing messages running around but a higher profile of the HIV/AIDS debate could mean better social welfare responses.

Late 1986 saw a sharp break in the pattern of AIDS policy. In October 1986 Fowler and others convinced Thatcher to set up a Cabinet Committee and look at the issue. Willie Whitelaw the Deputy Prime Minister was appointed Committee Chairman (Garfield 1996:114).It saw the first full address parliamentary debate which launched new responses, as well as old ones, with the announcement of an enhanced public education campaign [Ferlie and Pettigrew 1990:197].

In addition AIDS was made a notifiable disease, which invoked the 1984 Public Health Act [Day and Klein 1989:345]. The period has been described as a period of wartime emergency [Berridge 1996]. This is possibly the reasoning for so much advertising and importance in policy. After all there were people dying and a lot of media and public coverage.

Fowler talks of the response to aids “going ballistic”:” We had gone as a nation from hardly talking about aids to scarcely talking about anything else (Garfield 1996;117)”. “It needed someone to grip the problem, whether doing it right or wrong. What was to be done given that AIDS could not be cured or prevented by vaccine, there were only a limited number of options. The Government hedged his bets by pursuing a variety of options” (Department of Health and Social services 1988 cited in Day and Klien 1989, 398).

Proposals included increased research, a budget announced to cover the large extra costs for the NHS to finance the caring of AIDS patients and the enhanced public advertising campaign mentioned earlier. All of these shall be analyzed individually with reference to direct and indirect social welfare, as well as other benefits from the policy. The budget announced to cover large costs in the NHS for financing AIDS patients is certainly a direct social welfare response but not a revolutionary one.Even if limited, it reinstalls the belief that the Government holds that the care is available and is adequate and only needs to be budgeted due to the large costs.

Doing more than this in terms of direct social welfare, such as more support groups probably would not have been seen as justified at this time too much of society and to many ministers, as the disease was still largely regarded as the fault of homosexuals. This is not to say that this permits inaction in this field but the other moves that again were seen, as prevention indirect social welfare shall now be discussed.A public education campaign was seen as the only effective long-term strategy for prevention, by changing the populations’ sexual behavior. It was an initiative of increased advertising, across many media, about AIDS, HIV and homosexual behaviors in general.

The main emphasis was on methods of transmission of the disease, ‘AIDS as safe as you want to be’. It was said to distinguish British policy response from that of other countries, as they were seen to be owning up to the disease being prevalent in Britain.With this in mind it is important that AIDS was the first ‘media disease’ (Street 1988 cited in Garfield 1996:64) so the Government had to be seen to act because with elections looming in 1987, there risk that opposition may seize inaction as evidence of Government lack of competence and compassion the timing could not have been worse. The apparent emphasis on homosexuals as a gay plague and them as guilty victims has been said to create problems with Watney, again stating that anti gay prejudice in this period continues to make heterosexuals increasingly vulnerable to HIV (Watney 1991:3).

This is due to the ignorance the advertising created. Watney accuses the advertisements of giving off image that AIDS is direct retribution against those who wantonly fail to live lives of exclusively monomagus heterosexuality (Watney 1991:3). The Financial Times commended the national press, noting Britain’s campaign being copied by Italy and Belgium. “For once the advertising world has managed to act for the public good with a unity that has won it approval and respect” (Garfield 1996:122) which is an interesting comparison.

However, if we take Watneys view the national press unity was quite simply appealing to societies general view that the disease could be blamed on homosexuals who were fundamentally those most at risk from the problem. This campaign is successful for indirect social welfare in making the public aware HIV/AIDS with advertising but this was on the basis that people make their own conclusions and not really telling the whole story. Not part of the advertising campaign but another piece of policy emphasizing gay prejudice was Section 28 of local government in 1987, in aspects of school curriculum.The prime minister was said to be a great personal supporter of clause 28, amendment to the local government bill introduced 1987 which forbade councils and schools from promoting homosexuality (Garfield 1996:114).

This is indicative of the views of homosexuals held by the general population and this legislation only served to further tarr homosexuality. Policy in relation to this must have affected social welfare because not promoting homosexuality in councils (a local level where funding is organized), would mean revoking some support systems and care due to contradictory messages.Councils and schools would have been rendered unable to explain the truth behind the disease. It is also likely to deepen divides between homosexuals and the rest of society and make HIV/AIDS sufferers feel more distanced.

Day and Klien, on reflection of the Government’s action in this period state that the British Government’s policy regarding HIV/AIDS was not just a predictable way of handling the debate but also a rational way of dealing with the epidemic (1998:398).This is the case for many policy makers who have commended the dealing of events, although no reference is made to images given off from the advertising because homophobic views were held by society at large because it was where the disease was mainly concentrated. Also the existence of Clause 28 seems to point to the idea that prejudice to homosexuality was accepted and was not a consideration in evaluation of this action. If it was highlighted as a major homosexual problem why was the necessary support not given to this group.

However, there are still those critics, who looked at social welfare responses to the minority groups effected. Dr Owen called Government policy appallingly short sighted and particularly objected to the Government’s refusal to invest more resources in combating the risk to drug users, which was another major cause of HIV/AIDS. ( Garfiled 1996:132). Watney also discussed this issue, criticizing the Government’s failure to support community based health education and care amongst groups affected the most.

These groups in society who were sufferers of HIV/AIDS did have a stigma attached to them, which made social welfare policy so difficult to justify, as they were seen as bringing the disease upon themselves but this again cannot be used as an excuse. The social welfare response to the keeping alive of HIV/AIDS victims was also said to be problematic. Medical Research Council microbiologist saw that treatment research raises the moral dilemma, since one would run the risk of prolonging the lives of people who would be infectious in the community (Watney May 1989 cited in Watney 1991:169).For this reason the whole budget went into finding a vaccine for the uninfected thus saying goodbye to any sufferer.

The political management of the British AIDS epidemic demonstrates repeatedly and all levels that there are many higher priorities than either preventive medicine or the saving of lives (Watney 1991:175). This response is in fact fair. Preventative medicine and direct social welfare for sufferers had been largely inadequate. The action that was taken took a view of indirect social welfare of advertising to the whole population that was seen as a success for many.

However, this enhanced the wrong messages and prejudice. With the benefit of hindsight it is shown that there was not as big an epidemic explosion was expected which points to the idea that measures taken were successful and that the Tory Government were more than happy with everything done in terms of policy and thought they had dealt with it effectively. However, individual responses of the groups affected could be the reasoning behind this and does not justify the lack of compassion and morality given to affected groups ‘Act up London’ was formed in early 1989 and were a homosexual pressure group.Their main emphasis was changing the views that straight society has nothing to do with the homosexual population, especially HIV/AIDS sufferers and created pressure relating to cut backs in social security and other issues.

Fundamental to this were social welfare issues that sufferers could not gain mortgages or even private health insurance. They also looked at HIV housing discrimination and employment. Other successful HIV/AIDS activist groups included the Terrance Higgins Trust and National Aids Trust, who had been doing similar things in relation to discriminatory legislation.The extent of success on this front was mixed but fundamentally the major effect was probably in employment.

The Major Government of 1992 looked at a back-to-basics campaign, aiming at reinstalling traditional family life. Similar to the Thatcher regime this could be said as being slightly homophobic but a major change occurred in 1995 with the disability discrimination act 1995 including the treatment of people with AIDS in employment. This put a sufferer of AIDS on the same level as say someone in a wheel chair.It is this kind of legislation which creates a kind of equality however; “Tory MPs and family campaigners objections who “strenuously oppose putting AIDS sufferers who in this country mainly contract the illness from homosexual relations or sharing contaminated needles, on a par with the disabled who did nothing to contract their affliction” Adrian Rogers director of Tory family institute said, it’s crazy, people who behave morally do not get aids, full stop” (Daily Mail 28 august 1995: Goss and Adam Smith 1996:87).

This action was in 1995 after a good ten years of media attention and policy.It shows how public opinion was still homophobic and therefore the difficulties the Government had in justifying any kind of pro-HIV policy. Before 1995 similar pro-HIV direct social welfare responses would have received stronger opposition. The Government at the same time was dealing with problem of the recession, unemployment and the underclass, so to announce millions of pounds worth of budget going towards HIV support could have the potential of conflict due to the debate stigma but again is no reasoning for enactment.

The topic of public perceptions of HIV/AIDS was discussed by a research council known as the All Party Political Action Group on AIDS. In 1998 it addressed the movements of the past fifteen years coming up with some interesting conclusions about the debate. Britain has relatively low rates of infection, compared to other European countries, the USA and obviously Africa where the problem is certainly an epidemic (Hatfield and Walker 1998:9).Similarly, the establishment of an informal network of centers of excellence available in healthcare with examples of excellent social and community care since the late 1990’s provided by Local Education authorities and community and voluntary groups (Hatfield and Walker 1998:9), was commended.

Also progress has been made by people living with HIV/AIDS tackling discrimination and developing self help and peer support that have been more recent movements since the 1995 Disabled Discrimination Act. Attitudes towards people living with HIV have improved to some extent over last ten years.But still there is high degree of prejudice among the general public, although the general coverage has improved and media portrayal is sensationalist and inconsistent. Sex education is now compulsory in all schools at key stage 4 level [ages 14-16] presenting facts on HIV and other STD’s.

Suggestions have been made to refine the definitions of chronic and terminal illnesses used in benefit claims, to take into account HIV and AIDS and recognition of periods of remission, in order to help people get back to work successfully.This can possibly be partly related to the various ‘New Deals’ Labour have been working with since 1997. Co-ordination of social work for children as well as adults living with HIV has been done with family support and group social work to make support systems better (Hatfield and Walker 1998:14). Such organization and movement shows that social welfare responses in terms of care in the community are now taking place and although I am not evaluating them my perception is that they are certainly a good start.

This is mainly due to the coming of age of society with the issues of both HIV/AIDS and homosexuality. In totality after a review of most of the HIV/AIDS legislation since the initial cases in 1981, the responses in Britain have been more active and have had some good points in general but have been a shadowed by prejudice and discrimination against minority groups, but at least the problem has been addressed and the figures have never reached the levels of other nations.

However, the address of direct social welfare of the groups who the disease was centered on occurred minimally in 1986 with the Whitelaw Committee with an emphasis mainly on indirect prevention leaving interpretations that it is a homosexual problem and sufferers are guilty, leaving care of those sufferers to a self help ideology and leaving them more stigmatized in society. Additional social welfare directly was not considered until the late 1990’s where it then looked at specific HIV/AIDS groups addressing care and anti-discrimination a lot better.

The All Party Political Group on AIDS had built on these developments improving social welfare further. To conclude the social welfare responses have only really been adequate since they stated looking at care and anti-discrimination in the 1990’s because previously HIV/AIDS sufferers were treated inadequately with the view that the problem was disease for minority groups when there were other risks.

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