Scotland Learns From U.S. Mistakes, Turns Innovative in AIDS Battle

Vincent Hughes has many partners in his slow dance toward death.

He moves from home to hospice to hospital as he struggles against AIDS, the disease that has overshadowed his life since 1989.

Hughes, who believes he became infected by injecting drugs with a contaminated needle, said he is relieved that his life will end where it began--in the Scottish capital--because, for him, it is a place not only of family and friends. It is a community that cares.

“It’s one of the best places to be,” Hughes, 34, said one afternoon at Milestone House, a hospice for people with acquired immune deficiency syndrome.

In the Lothian region, which sweeps along the southern shore of the Firth of Forth taking in the capital and 749,600 residents, 1,171 people have tested positive for the AIDS virus, HIV, according to Northern General Hospital.

Seventy-five people have died of AIDS; 58 others have full-blown AIDS.

Health officials estimate that one in 100 men and one in 200 women ages 15 to 45 are HIV positive. In Muirhouse, a public housing area in Edinburgh, the figure soars to one in 20 men and one in 40 women.

In Edinburgh, more than 41% of people contracted the AIDS virus from sharing needles for injecting drugs, compared with 23% of U.S. cases. About 43% of Edinburgh’s cases came from homosexual contact, compared to 58% in the United States.

Paul Trainer of the Scottish AIDS Monitor said Edinburgh learned from what were seen as mistakes in the United States, including a reluctance by government agencies to provide money and programs, such as needles and condoms, to curb the spread of the disease.

“Both on the East and West coasts of America the first they knew of AIDS was they had people ill. We had some years to prepare,” said Dr. George Bath, who is AIDS coordinator for the region.

“By the time it came here, we were well-prepared for a disaster,” said Dr. Roy Robertson. His office is at Muirhouse, a subsidized housing project in suburban Edinburgh that is notorious for drug addicts and AIDS.

Drugs offered an escape from the despair of the housing projects, built in the 1960s. The concrete slabs of Muirhouse are brightened only by graffiti.

“When heroin came in the middle of the 1980s, people thought, ‘This is lovely, this makes you feel fabulous,’ and you block out the horrible house and the kids running about with hardly any food,” said Ruth Murie, manager of Milestone House.

The first case of AIDS was diagnosed in Edinburgh in 1982, but it wasn’t until 1985, when a blood test for HIV was introduced, that doctors learned the extent of the problem. Half the drug users in Edinburgh had the virus.

In the United States, AIDS struck first at gay men who often had been self-supporting and who had the support of friends. But in Edinburgh, many drug users were bad off to begin with. Whole families were infected, leaving no one to provide care. Others are spurned by their families.

“They had 101 social problems before they got the virus,” said Maria Scott, a nurse who arranges home care for infected people.

The government, doctors and community groups stepped in.

The National Health Service made it relatively easy to coordinate a response by doctors, government councils, community groups and educators, Bath said. Treatment, prevention and education programs began early in 1986.

Bath said they are working.

“I certainly think that there is all sorts of evidence to indicate that HIV infection is much less than it has been,” he said, citing studies that indicate a decline in the rate of infections, and safer behavior on the part of drug abusers who carry the virus.

Doctors began to encourage HIV-positive drug users to stop injecting illegal drugs and start taking oral substitutes, such as Methadone or DF118. The service has been extended to all drug users who agree to stop injecting illegal drugs. About 850 people are in the program.

Users who continue to inject can obtain clean needles through exchanges or buy them at pharmacies. More than 100 people a month use needle exchanges.

“The services here have been set up with drug users in mind,” Murie said. “Because of that the services are very flexible, very user-friendly.”

The dangers of sex also are addressed in schools, on buses, in cinemas and in pubs.

“What should a real Scotsman wear under his kilt?” Sottish AIDS Monitor asks. “A condom.”

This year, the Scottish Office has allocated $33.7 million for AIDS- and HIV-related services. The National Health Service pays for all medical care, and there are more than 60 sources of help for people with HIV or AIDS.

A group named Positive Help will run errands, baby-sit, drive patients to appointments. Body Positive provides support and counseling. SAM provides trained “buddies” who offer companionship and practical assistance.

Solas (Gaelic for light) offers information and alternative therapies such as hypnotism and massage.

In its first year, Milestone House admitted 113 people, 17 of whom died there. Children can stay with their infected parents, and at one time the hospice had eight children under 10.

Hughes, a former dancer, said his life is made much easier by such services, and he has turned his attention to writing a play about his life called “Chance Dance,” a reference to injecting heroin.