Feature

It’s time to remove the inequality

Labour’s strategy for HIV must value those who are affected and tackle the prejudice they face, says John Nicholson

In May 1993 health secretary Virginia Bottomley announced a significant shift in government policy on HIV. The issue had ‘come of age’, she said, and was to take its place on the ‘level playing field’ within the new NHS internal market.

In reality, the announcement amounted to a down-grading of HIV. Underlying the policy shift was the notion that HIV no longer affected the heterosexual population, but ‘only’ gay men and injecting drug users (or, as an alternative, black people). The rest of ‘us’ were alright, and did not need to worry about ‘them’.

The stated intention to make HIV care part of the ‘mainstream’ reinforced this notion. The Health of the Nationpromoted an HIV prevention lifestyle which ignored people already living with HIV. ‘HIV and sexual health’ became ‘sexual health’ or even ‘family planning’. Advice to the sexually active – ‘don’t sleep with more than one partner’ — and to drug-users – ‘don’t inject drugs’ — echoed advice to the homeless – ‘find a house’ – or to the unemployed – ‘get a job’.

Local authorities’ Community Care Plans omitted care for people with HIV. ‘Need’ was defined by the (un)availability of specific HIV funding — as the grant declined, so did people’s need.

Press hysteria over each HIV-positive health care worker never lessened. Media regulatory bodies showed themselves toothless and patients’ organisations and medical professionals rushed to legitimise the populist line.

But people with HIV I still matter. HIV services may have been a soft target for a government making widespread attacks on public health and social care but this is not acceptable. A new government should do something better.

George House Trust surveyed all parliamentary candidates before the general election. The results were encouraging — a third of Labour, Liberal Democrat and Nationalist MPs support improved HIV funding, removing discrimination and increasing aid to developing countries. We are working with MPs on a ‘legislative agenda for change’, to tackle both HIV and the inadequacies of care brought about by the last government.

What does this mean? First, there must be real choices for people with HIV; discriminatory barriers which have prevented such choices must be removed. Second, the NHS market has not served people with HIV, nor others on the margins of society. The market must go. Third, change cannot be achieved in one country alone: HIV requires global solutions, including challenging the interests of multi-national drug companies. It is unacceptable for the poorest countries to provide human guinea pigs for research which benefits only the richest.

This will take time. More immediately, the government can ensure longer-term mainstream funding for services throughout this country. Short-term funding was always a strange answer to long-term need. New drugs have helped to improve quality of life, but people with HIV still need a range of support. Funding drugs must not mean cutting social and community services.

People with HIV must be integral to planning structures, and must have informed choice about services, which should be confidential, accessible, and flexible. Within these, the important function of HIV voluntary services needs practical support, such as three-year contracts, and our lobbying and advocacy roles need recognition. Voluntary work should be chosen voluntarily, not as part of government welfare-to-workfare. Quality voluntary services are not cheap labour to let the statutory sector off the hook.

And we need an end to discrimination. Discrimination is what makes HIV work a special case; tackling it remains paramount.

This means renewing anti-discrimination within Health of the Nation and outlawing discrimination on the grounds of HIV in employment and insurance, including the NHS. Detention of HIV patients against their will must be banned (in Public Health Acts) and specific discrimination removed from immigration law. The crucial signal for health education and for the self-esteem of young people, and gay people generally, would be equalising the age of consent to 16. The last government reduced, but did not remove, the inequality. This one must find time to right the wrong. Similarly, the iniquitous Section 28 of the Local Government Act (forbidding ‘promotion’ of homosexuality) must be abolished.

The new government wants a national strategy for HIV. Plain-spoken prevention messages, equal access to care, the search for a cure — the strategy must encompass all national and local government departments and bridge the health and social care divide. Services need to be local, not reliant on the consultant or GP people happen to go to. There are greater needs in London — most people with HIV live in London — but London does not speak for the rest of England, let alone Scotland or Wales, and services are needed outside the capital, and throughout the world. The national strategy must think globally as well as acting locally, and above all must show it values people affected by HIV.