Don't die of confusion

When it seems that every newspaper report on AIDS is saying something different it is hardly surprising that our patients are confused about AIDS. They could be forgiven for coming to the conclusion that HIV is harmless, heterosexual AIDS is a myth, that a cure or vaccine is just around the corner and that promiscuity is safe.

At the moment people are in danger of dying not of ignorance so much as confusion. The reasons for the confusion are many: AIDS is hard for journalists to understand, even scientists cannot agree on the exact means by which HIV causes disease, people grasp at rays of hope in early progress reports, and social stigma combined with pressure group interests make objective discussion very difficult. Indeed it is hard to make any statement about AIDS without someone being upset.

One of the most difficult and sensitive areas affecting us as doctors is the issue of health regulations. With any other rapidly-spreading, lethal infectious disease those with the disease would be notified, contacts traced, disease patterns scrutinised and epidemiology monitored. However discrimination and fear of those with HIV or AIDS are so common and so severe that formal notification is an unthinkable step for any government, mainly because of the risk of driving infection underground and accelerating spread.

Reactions of fear

Take AIDS Care Education and Training's own experience of looking after people dying with AIDS at home: a frail unwell patient went into a chemist for AZT but was turned away. After he insisted on being served the chemist threatened to call the police. Although he backed down our patient was followed out into the street and beaten up by others who had been waiting in the queue.

Another was so scared of violence from neighbours, who had threatened him and broken down the door of his flat, that he initially refused volunteer help. Eventually after several weeks of practical and nursing support he went shopping. Shortly after he left home he was assaulted, taken to casualty with severe head injuries and was dead three days later.

One Christmas Eve an ACET nurse visited a family where one of two children and both parents were infected, to find that men had arrived shortly before with stockings over their heads and had smashed the windows. Two people's homes (not of people cared for by us) have been set on fire by others who suspected that an occupant had HIV or AIDS.

One occasion was a direct result of an overheard conversation between two receptionists in a doctor's surgery. Our patients lose families, friends, jobs, homes and sex lives at the same time as having to come to terms with a progressive illness which will almost certainly kill them.

Over-protectionism in British Law

These kind of reactions mean that it is near impossible to conduct rational public debate on AIDS, strung between fierce hostility on the one hand and over-protectionism on the other. The end results can be bizarre. Take the Birmingham case where it was alleged that a man had passed on infection to a number of women while knowing he was infectious yet not telling them or taking precautions - allegations he disputed.

It became apparent that under British Law someone deliberately or recklessly infecting others could do so on a regular basis without any legal constraint, apart from possibly a court order allowing the person to be detained temporarily for medical treatment[1]. Yet someone with uncontrolled epilepsy is committing an offence by driving a car and would be guilty of a serious offence if someone was killed as a result of a fit behind the wheel.

Some say it is the responsibility of every sexually active adult to use a condom and if they did, reckless or deliberate infection could not happen. That is the equivalent of tackling the gun problem in the US by telling everyone to buy and wear bullet-proof vests. The argument runs that if someone shoots at you and you are killed, it is your own stupid fault for not taking precautions before you go out of the house.

Another great dilemma is presented by the surgeon who becomes infected. With so many CMF members working in difficult conditions overseas in high incidence areas, this is an issue of great personal relevance to many readers. No-one in a Western nation wants to be operated on by a surgeon with HIV because of the obvious (but small) risk of infection and because HIV can affect memory and manual dexterity by attacking cells in the brain.

Great media circuses are becoming increasingly common here as a number of doctors begin to realize that they too could be HIV infected. Under current UK guidelines a surgeon clearly has an obligation to seek professional advice if he or she suspects there has been an HIV risk in the past. However, as we have seen, intense uncontrolled media invasion has the power to destroy career, reputation, and the ability to carry on with normal life.

Individual rights and infection control

In all these situations the command of Jesus to love our neighbours as ourselves means balancing the need to protect and care for an individual with HIV, with the need to protect those who are currently uninfected. A possible approach could be to make it illegal publicly to identify someone alive with HIV or AIDS without consent.

The other side of the coin would be to strengthen the Offence Against the Person Act, to cover acting deliberately or recklessly in a way causing illness to another, or acting in a way likely to do so. An exception on media identification could then be made following conviction for an offence under the Act relating to HIV transmission.

People argue that control measures will be likely to drive AIDS underground, but doing nothing on this issue is already driving AIDS underground. The way HIV-infected surgeons have been treated recently by the press has appalled many and must have made it more likely that others who realize they may be infected will keep their fears to themselves.

Censorship

Another area with devastating implications is the censorship of almost all information about the African AIDS problem, where in many towns and cities one in three of all adults is infected. A powerful coalition exists between African governments (scared about tourism and investment), our own government (scared about racist attacks and fuelling the anti-immigration lobby), Black pressure groups (scared of blame and marginalisation), and gay groups (scared that people will see most of the so-called heterosexual problem in the UK is imported, thus highlighting again that AIDS is primarily a gay illness here).

The result has been great difficulty in reporting the overseas AIDS disaster. Even though up to one in three adults is already infected in parts of Africa it is almost impossible to get permission to film what is happening and newspaper editors are nervous, while governments of many African nations do their best to muzzle scientists.

When we reported that six out of ten of the women with AIDS we were caring for at home in London were Africans infected abroad we were criticised. Yet such a fact has profound implications for health planners and care workers here as the overseas problem increases.

A Christian response to sexual sin

Although it is true that many have been infected despite being celibate then monogamous - over 30% of one survey of infected women in Malawi fall into this category, infected through the infidelity of their husbands - the strong association of AIDS with promiscuity raises important questions for many Christians.

I often think about the response of Jesus to the woman caught in adultery - the story should perhaps be renamed the story of the missing man[5]. Angry men brought a woman to Jesus while her male sexual partner disappeared. In Jesus' day the woman deserved to die while the man's behaviour was hardly worth bothering about, and the day to day imperfections of normal life were dismissed as irrelevant.

Jesus cut right through their double standards by inviting anyone who dared pretend he was perfect to throw the first stone. They all left, the oldest first. Jesus will not allow you or I to point the finger at another with the attitude that we were never as bad. His message was that all of us have sinned and fallen short of God's glory[6], and that all of us would still be dead outside of God's undeserved mercy and grace[7]. As doctors we of all people should know that if someone is dead, then that person is dead. When it comes to the right to judge others, Jesus shows us that there are no degrees of deadness in the kingdom of God. Jesus was the only person there who had the right to judge, yet Jesus himself tells the woman that he does not condemn her, telling her to 'go and sin no more'[8].

In our culture we also have double standards. The big sin is homosexual sex, while you get the impression that the rest hardly seems to matter. A male politician who has an affair outside of marriage is treated differently from one who has a sexual relationship with another man. Yet would the response of Jesus to the crowd really have been that different if the person they had thrown down at his feet had been a man caught having sex with a man?

A Christian response to 'wild living'

I often think too of the prodigal son, dying of AIDS in the big city before he had time to come to his senses[9]. I think about his father reading the death notice in the papers with tears rolling down his face. The pain of separation was terrible to bear.

The father had released his son to follow his own disastrous path, hoping to the last for reconciliation, friendship and fellowship once again. The father's arms were outstretched till the day the son died. Then I am also reminded of the prophet Jeremiah, who could see an approaching disaster so clearly but could not persuade people to believe him.

A Christian response to AIDS

In one sense AIDS is a disease like any other: part of our fallen world. If AIDS is the wrath of God then syphilis was too. Did syphilis cease to be so the day penicillin became available? We live in a world of cause and effect. The Bible teaches us that sex outside marriage is physically unhealthy, emotionally hazardous and affects us spiritually. Yet we are called to care unconditionally for all who are ill regardless of how they come to be so.

ACET was set up in 1988 to be a Christian response to AIDS. We started by training volunteers from churches to go into homes to give practical help to those ill or dying with AIDS. We also began sending educators into schools. Both programmes have grown rapidly. With 50 staff, over 400 volunteers and hundreds of other individual supporters we are now the country's largest independent provider of AIDS home care, covering London, parts of the South Coast, the East Midlands, Edinburgh, Glasgow and Dundee.

Our schools workers have seen over 70,000 pupils face to face, with a high-impact message based on their own experience of working in Home Care. In addition, thanks to the generosity of the Association of British Insurers, 200,000 pupils have now received our schools booklet 'HIV- It's Your Choice'. This 24 page full colour resource has been a great success since its launch in the House of Lords in 1991. Over 95% of teachers we have surveyed say it is the best pupil resource they have seen.

Schools have to teach AIDS by law, but need help. Most governors, parents and teachers want to teach AIDS in the context of relationships, commitment and the freedom to say no to sex or injecting drugs. The church has a vitally important role to play, providing a different approach to the 'rubberised' sex promoted by many other agencies. While patient care is mainly funded through central government grants and service contracts, our schools programme depends entirely on voluntary donations.

Overseas we have been running HIV prevention programmes in Romania, funded by UNICEF at the request of their government, while we are assisting a range of projects in Uganda backed by Tear Fund. Thailand is another country where ACET is very active, working along side local Christian agencies.

We are called to be salt and light[10]. Salt has a profound influence but is rarely identified or visible except as an ingredient. Light however is very obvious and its source recognizable. As salt we care for the sick and help save the lives of young people. As light we aim to be a source of common sense and wisdom to the media and to key decision makers.

In six months alone in 1991, ACET staff were quoted over 140 times in national, regional and specialist press, with innumerable interviews on radio and television. We are seen not so much as a Christian voice, but as an expert voice, a guiding light in the chaos of AIDS, helping people understand what is really going on and showing people how they can respond.

The task is great, the problem huge, resources are limited yet together I believe we can have a huge impact. Christian agencies like Mildmay Mission Hospital and ACET are but two examples of what I sense increasingly is becoming a global movement of people responding to God's call to be involved.

The cost of involvement is high. For some working overseas under difficult conditions, infected through caring for patients, the ultimate cost may be life itself. It is time for us all to wake up to what is happening, to support those involved directly, and to prepare for the impact of AIDS on our own work and in our own churches.

All growing churches are likely to import HIV, as infection survives conversion unless God intervenes. Is your church ready for AIDS? Are you helping them prepare? A young woman I counselled recently had been forced to leave her church and move 100 miles away after people gradually became aware of what was the matter. No one wanted to be in the same home group. No one wanted to share the communion cup with her. No one wanted their children to play with hers. Could she have found a home in your church?

How you can help

You can help by linking your church with ACET. Through a link person we supply your church with literature to help inform, motivate and encourage people to become involved as supporters or volunteers.

You can help by becoming a supporter yourself, either financially or as a prayer partner or both.

You can help by becoming an ACET volunteer or by encouraging others to do so.

You can help by encouraging schools to order and use our teacher packs and booklets. ABI may be able to provide limited numbers of booklets for use with patients - a number of hospitals, clinics and surgeries are using them.

Most of all you can help by doing your medical elective with us, and encouraging others to do so. Write to ACET for further information, or contact HealthServe - www.healthserve.org.