Defeating prejudice: The red ribbon revolution

For quarter of a century, campaigners have struggled to secure funding for the fight against Aids and HIV. Stars rally to the cause now, but it remains a tough battle. Helen Brown reports
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The Independent Online

In the beginning

First there was fear. And confusion. Panic on the gay dancefloors of America. In May 1981, The New York Times ran an article headlined: " Rare Cancer Seen in 41 Homosexuals". In 1982 the disease known as Gay Related Immune Deficiency was renamed Acquired Immune Deficiency Syndrome, 1,300 new cases had been reported in the US and 460 sufferers had died. That was the year that saw the first support groups form: the Gay Men's Health Crisis in New York and the Aids Project of Los Angeles. APLA's first big attempt at fundraising took place that Christmas, with a benefit that netted $7,000. In 1984, a benefit concert at Studio One featuring Joan Rivers raised $45,000.

And by the end of the decade, the organisation's tireless regime of campaigning and benefit-organising had raised more than $77m for direct services for people with Aids.

"Aids fundraising grew up at the same time as fundraising generally," Simon Garfield, the author of The End of Innocence: Britain in the Time of Aids, says. "In England, as in America, it began with small events in gay pubs and clubs. It was all about 'how do we help our friends'. Everyone knew everybody else."

The close-knit community lent itself to telemarketing. "There was already a sort of database," Mr Garfield says. "But people were nervous about how to get the money. If you were collecting on the street, you had to make it clear that this wasn't just about gay men. There were all these terrors of association which took a few years to disperse."

However, celebrity support came slowly. "There was a lot of nervousness around the issue for the big names," Mr Garfield recalls. "It was seen as just a gay thing. Famous people who were openly gay were keen to support their friends. But people like Elton John and George Michael were waiting to see which way the wind blew. They were worried about the effect on their careers."

Inevitably, the deaths of celebrities had an impact. The matinee idol Rock Hudson died of Aids in 1985, giving the disease "a face", in the words of Morgan Fairchild. Then Freddie Mercury died in the UK in November 1991. "His death had a huge effect and influence which spread far beyond the gay community," Mr Garfield says.

The Terrence Higgins Trust

Terrence Higgins worked as a Hansard reporter in the House of Commons and as a barman in the London nightclub Heaven. He collapsed while working at the club in 1982 and was admitted to St Thomas' Hospital, near Westminster, where he died of pneumonia a few weeks later. He was 37 years old.

"We had no idea what was going on," Rupert Whitaker, Higgins's boyfriend at the time, says. "We just knew that he was sick. I suggested to the consultant that it was this new American disease. They ignored me. After Terry died they said to me that I could read the autopsy report in the medical journals, but since I wasn't family they wouldn't tell me directly. Terry had no family. I paid for his funeral out of my student grant."

Martin Butler, a friend of Higgins, then approached Dr Whitaker. "He said, 'Why don't we do something about this?'. I didn't want anyone else to go through what I'd gone through. Martin's idea, originally, was to host club events. He was an event organiser and he wanted to put together these club nights to fund research and medical services.

"We put collecting tins in pubs. There were drag shows and donations. People needed no prompting to give. People were starting to drop like flies. They would be fine one day and three weeks later they would be dead. Everybody was frightened. We didn't initially find many donors beyond the gay community because of the huge stigma.

"We gave to the hospital where Terry had died," Dr Whitaker says. "But we realised that supporting the existing services was a losing game; we needed to provide support ourselves."

Tony Whitehead of the Terrence Higgins Trust (THT) says: "I had been volunteering for the London Lesbian and Gay Switchboard and we were getting so many calls from people who were frightened by news of Terrence's death. At the end of a Switchboard meeting, I asked who wanted to form a group to do something. We got together with Rupert and a group of Terrence's friends. And the trust began in my flat in Marylebone. We wanted to become a proper charity with all the legal and medical backing, with a focus on support and education."

The trust gained charitable status in 1984, the same year Mr Whitehead was diagnosed HIV positive. "Although fundraising began in the gay community, we forged links with other affected groups - we worked with people at the Haemophilia Society because that got public attention," he says. "And we worked with people who used drugs. Sometimes raising money was hard. Most people were generous but a few had this ridiculous idea that HIV had been cooked up in some germ laboratory to target the gay community. And others thought we were exaggerating it and being anti-gay and anti-sex by speaking out. That seems extraordinary now but I suppose when people are frightened they react in all sorts of ways.

"We were fortunate in the appointment of Sir Donald Acheson as the Government's chief medical Oficer," Mr Whitehead continues. "He knew this was going to be a significant problem. So although getting government money was never easy, we did get some. And as the media paid more attention the phone lines began ringing."

Debbie Holmes, the trust's head of fundraising, remembers her job interview. "The panel said the job was hard. I thought they were overplaying it. I thought that people were moved by the issue. But I am continually shocked by the rejections we get and the hostility I face. People wrote vicious, homophobic replies to our letters. The Charities Aid Foundation publish an annual ranking for causes the public are most willing to support. And until last year, HIV/Aids always came in at 25th out of 29. Now we're 15th out of 29."

Ms Holmes thinks that the public see what is happening overseas, but the problem is not so visible at home. "People in the West don't 'look' so ill any more because of the combination therapies. So it can be difficult to communicate the human story. The struggle. The need."

"When Terrence became ill," Dr Whitaker says, "there was no co-ordinated medical response. Treatment was, and still is, biomedical, not biopsychosocial. There were no psychosocial services and ways of supporting people as they died, and there's still very little of that. The quality of care here is dreadful, about 30 years behind the US. Which is why voluntary groups like the THT are still so important."

Funding Fatigue

The National Aids Trust (NAT) was set up in 1987 by the Department of Health. Its aim was to coordinate the HIV/Aids sector and one of its key aims was to administer grants to other HIV/Aids organisations. Its chief executive, Deborah Jack, says: "We used to be based in a government building, but we moved out in 1996. HIV was being de-prioritised. It was difficult to be sitting in the Department of Health and challenging its policies."

Although World Aids Day, launched by the trust in 1991, provided an annual public reminder, Dr Whitaker agrees about the de-prioritisation HIV/Aids issues during the 1990s. "Physicians grabbed back control after the antiretrovirals came in," he says. "We had volunteers in hospitals emptying bedpans because the nurses wouldn't do it. But after the antiretrovirals came in, the volunteers were kicked out and the issue became biomedical again. We're back full circle to the idea that you've been 'bad' if you test HIV positive. There's this idea that 'the information's out there', but the information isn't out there. You get 16-year-olds saying, 'There are pills for that, I don't need to use a condom'."

NAT's government funding has been falling. "In 2003 we got £700,000 from the government," Ms Jack says, "but in the year 2005/6 we got just £261,000. We're having to look at other sources. Our biggest single source of income is charitable trusts, a number of which have very specific objectives concerning some of the most vulnerable groups in society.

"One of our frustrations is that most big companies have a 'charity of the year', which closes the door immediately," she says. "HIV is never going to be the 'big charity' of choice. Cancer charities, children's charities are always more popular. And we've struggled to find companies to sell the red ribbons on our behalf."

MAC Cosmetics, Levi's and Virgin are among the few companies selling ribbons in store. And L'Oreal (which does work in the developing world using hairdressers to educate clients about Aids) have been encouraging all hairdressers using their products to sell ribbons.

"We couldn't get a corporate sponsor for World Aids Day this year," Ms Jack says. "It would have been a good opportunity too. Last year, in the week around World Aids Day, we had 5 million visitors to our website. There is undoubtedly, depressingly, still stigma. I often say to people that the shape of the epidemic has changed so much, the only thing that hasn't changed is the stigma. We still read media reports about, say, a policeman being spat at by somebody HIV positive, suffering 'an agonising wait for test results' although we should all know you couldn't catch the virus that way.

"A poll found that one in three people living with HIV in the UK felt they had suffered discrimination - and one of the biggest areas of discrimination was health care, with dentists refusing to see people with HIV and GPs removing them from their lists."

Spend and Save (Lives)

As the millennium passed, collecting tins began to ring hollow. A new impetus was needed. Cue Bono, Bobby Shriver and Project RED: a plan to get the corporations involved and the customer empowered. "Back in 1998," Mr Shriver says, "there wasn't just funding fatigue in the US, there was nothing. Nobody was paying attention. We didn't have Comic Relief. Bono and I started working in America to develop some political muscle but in 2004 we realised we didn't have any private sector support and that's where we came up with the idea for Product RED. The colour's not based so much on the red ribbon as on the reality of Aids as an emergency. We wanted to raise a red light - people are dying! Act now!"

RED is a brand, rather than a charity. With Mr Shriver as its chief executive, it is licensed to partner companies such as American Express, Apple Computer, Converse, Motorola, Gap and Giorgio Armani. Each company then creates a product with the Product RED logo and a percentage of the profits from the sale of these will go to the Global Fund to Fight Aids, Tuberculosis and Malaria. Amex has promised to donate 1 per cent of every pound spent on its RED credit cards to the fund. "The companies taking part are pretty brave," Mr Shriver says, "because many, many more said no."

And he believes this "consumer power" will re-energise public engagement. "People would come up to me or Bono and say that what we were doing was great, how could they help? And we would say, 'Write a letter to the President, to your senator, to Gordon Brown and Tony Blair'. But they don't want to do that. It seems old fashioned or ineffective. But if you say to them, 'Would you get a credit card if it were free and they gave half the money away?', people will do that. If you're gonna get a credit card or a mobile phone or a T-Shirt anyway, why not get a RED one?"

The idea is that, by making giving part of everyday life, those statistics will not seem so insurmountable. Mr Shriver quotes Oscar Wilde: "It is the mark of a truly educated man [or woman] to be deeply moved by statistics.

"But the numbers are there," he says, "and people aren't being moved by them or they'd be behaving differently now. We've been in business six months in England with the Motorola phone and the credit card and Gap have just launched their collection. In America we've only been going five weeks. We're getting ready to launch in Japan and the phones will launch in Nigeria, Malaysia, Singapore and South Africa today. It takes time. Critics say, 'You should be launching in all the world's countries simultaneously and set up the global fund right now', but that's unrealistic. People have to give us a break and let us get it running."

Star Appeals

In April 1987, Diana, Princess of Wales became one of the first celebrities to be photographed touching a person infected with HIV. "When so many still believed that Aids could be contracted through casual contact," Bill Clinton said in 2001, "Diana sat on the sickbed of a man with Aids and held his hand. She showed the world that people with Aids deserve no isolation, but compassion and kindness. It helped change world opinion, and gave hope to people with Aids with an outcome of saved lives of people at risk."

Ms Jack of the NAT says Diana, who was the trust's patron from 1991 until her death in 1997, was "incredibly powerful". "She made the issues come alive. She dispelled the myths of transmission. The media don't see HIV/Aids as news. But when a celebrity gets involved, they want pictures and we get headlines."

Other celebrities, such as Emma Thompson (who spoke of the "psychotic detachment" of Western governments over the African Aids problem) and Stephen Fry (who has been long involved with the THT) do much to keep the subject in the news. When Scarlett Johansson spoke earlier this year about her own regular HIV tests, she reawoke the topic in women's magazines.

And then there's Elton John, who established the Elton John Aids Foundation in 1992. The foundation has raised more than $100m to support programmes in 55 countries around the world.

Claire Lewis is Oxfam's international artist liaison manager. Her job is to match the people who would prefer not to be called "celebrities" to Oxfam's causes. "Lots of the artists we work with don't do much media. They do more fundraising and advocacy. They'll host dinners and write letters. For example, Helen Mirren will host a reception for a lot of lawyers or bankers and she'll talk about her latest trip to Uganda. We won't ask for money then. But Helen will send a letter later. A personal connection makes a difference."

Annie Lennox is just beginning work as one of Oxfam's ambassadors. " She's done a lot of work with the HIV Aids Alliance and became very publicly associated with the issue when she did a trip to Uganda for Comic Relief. We're trying to raise £3m for HIV/Aids in Malawi and she provides a tangible figure. At the moment she's doing voiceovers, adverts and writing letters."

The novelist Monica Ali has also used her name recognition to push HIV/Aids up the public agenda. "I've been out to Uganda with Oxfam and to Calcutta with Unicef," she says. "And I feel quite privileged to be in a position to do some good.

"Sometimes you expect to be writing a horror story, about something overwhelming which might make people feel powerless. But when I went out to Kampala the news was relatively good. Lots of the people I met would have died 10 years ago, before antiretrovirals were available. Just having the drugs isn't enough, though. People can't always get to them, or there are problems for those who have lost jobs and are trying to raise a family.

"As a novelist I've always been interested in the human angle and hopefully I can report on the telling detail. Like the fact that antiretrovirals make you very, very hungry. I didn't know that. But I was talking to the patients in Kampala and they were laughing and saying that they'd be washing their hands after a meal and they'd be ready to eat again."

As an ambassador for Unicef, Ewan McGregor has made a World Aids Day documentary (to be shown on Sky Three at 8pm tonight) in which he visited Malawi to report on children as the "missing face of Aids". He says: "I met children in Malawi who have lost one or both parents to Aids and have been left to grow up alone. In the run-up to Christmas and the New Year, don't buy your friends and family the same old soap or socks. Why not buy one of Unicef's gifts instead? Last year I bought my parents a ton of porridge for a village. For about £14, your could give a child orphaned by Aids the basic health care, nutrition, school uniform and supplies it needs, as well as psychosocial support during times of distress."

Ribbons are Red, Ribbons are Blue and Kids Collect Shoes

In 1991, Jeremy Irons attended the Tony Awards with a little red loop pinned to his lapel. He was the first high-profile celebrity to wear the red ribbon created by the New York-based Visual Aids Artists Caucus earlier that year.

The trigger was a column by Michael Goff in the American gay/lesbian magazine Outweek. Mr Goff had looked around at all the yellow ribbons worn in support of the 1990-91 Gulf War, and he asked why there wasn't a ribbon for HIV/Aids. The red was chosen as a "connection to blood and the idea of passion - not only anger, but love, like a Valentine."

A visual symbol of an illness that many would rather not have mentioned, the red ribbon was popular during the 1990s, and since there's no copyright on the red ribbon, any HIV/Aids campaign can use it. But they're becoming less and less visible. "We look quite enviously on breast cancer's pink ribbon now," Ms Jack says. "Companies like M&S do so much for them. They do pink products. But we can't get a dialogue going with red ribbons in the same way. We need a brave company to stand up with us."

Last year Unicef launched the red and blue ribbon as part of its "Unite for children, Unite against Aids" appeal. The aim is to to raise £15m for children affected by Aids around the world by 2010. The charity has raised £2m since last October.

Meanwhile, in association with Unicef, Blue Peter is helping children to get involved in fundraising by donating old shoes to the Shoebiz Appeal for Malawi.