positive changes

Organisations serving people who are HIV-positive or
have Aids have had to transform themselves as a result of new
medication, shifts in the populations of those with the condition,
and changes in funding. Anabel Unity Sale
reports.

As the US celebrates Independence Day on 4 July, the UK will
mark a very different anniversary. It will be exactly 20 years
since the first person officially died from Aids in the UK.

When 37-year-old Terry Higgins died at St Thomas’ Hospital,
London, no one knew he would be one of the first of millions across
the globe to be killed by the disease. That year 12 others died
from Aids in the UK.

The earliest figures from the Public Health Laboratory Service
Aids Centre¹ show there were 461 Aids-related deaths in
the UK in the period up to 1986. By 1994 this had rocketed to
1,531, with actual diagnoses of Aids hitting a high of 1,853 in the
same year.

Since then the number of Aids diagnoses and deaths in the UK has
gradually fallen. In 2001, 558 people were diagnosed with
full-blown Aids and 21 people died from it. In the first quarter of
this year, there have been 55 Aids diagnoses and 18 deaths from
Aids-related illnesses

Although the Aids epidemic appears to be under control, this is
not the complete picture. HIV infections continue to rise. In 2001
4,157 people in the UK were diagnosed HIV positive. This was the
highest rate recorded since statistics were first collated, apart
from the period up to 1986. And in the first four months of this
year 557 people tested HIV-positive.

When HIV and Aids first hit the headlines it was the voluntary
sector that rose to the challenge of offering support and advice
services to this new client group. But what are the challenges
facing the sector as the impact of HIV and Aids continues to
change?

Terrence Higgins Trust is the largest of the UK’s HIV charities.
It was formed a few months after Higgins’s death as the Terry
Higgins Trust by his friends. Its first public meeting took place
at the London Apprentice pub in 1983 and in August of the same year
it was formally renamed the Terrence Higgins Trust (THT).

So how have the changing rates of HIV infections and Aids deaths
impacted on voluntary agencies such as THT?

Andrew Ridley, THT director of operations, says the charity’s
work can be divided into pre and post-1996. From 1996 onwards
combination therapies were prescribed to people with HIV in the UK
– a successful new medication for HIV-positive people.

Ridley says the effect of the combination therapies was felt
immediately and the Aids death rate plummeted the following year.
“This had a massive impact on our organisation,” he says. “The
first thing we noticed was there were a substantially larger number
of people using our services.”

Although THT was first perceived as an organisation solely for
gay men, Ridley says it works with a variety of clients. “We have
had to become much more family-focused and employ multilingual
staff because of the way the disease has spread.”

Naz Project London also saw a change in its client base. The
agency was launched in 1991 to provide culturally and
linguistically appropriate HIV services to clients from south Asia,
north Africa and the Middle East. The project has since broadened
its target group to include other ethnic minority groups.

Parminder Sekhon, Naz Project client support service
co-ordinator, says the success of the new drugs meant it had to
change the way it operated. “In 1997-8 we consolidated the
organisation by diversifying our services,” she says. “We extended
out remit to work with other community groups from the Horn of
Africa.”

Sekhon says it was “a bold move” because other agencies were
streamlining their services. The agency now runs two groups – Naz
Brazil and Naz Latina – for Latin American communities.

Voluntary sector agencies have also adapted their services to
deal with more clients. Ridley says THT’s senior management team
wanted to move its services “from helping people towards death from
Aids to helping them live with HIV” when it embarked on a change
programme in 1997. Its buddy services were completely revamped.
When first set up, the service matched HIV-positive clients with
volunteers who emotionally supported them until their death. With a
decreased death rate buddies now work on six-month contracts with
specific goals, such as improving the client’s mental health. THT
now helps up to 15,000 people a year and has a full-time staff of
230 and 30 part-timers and 800 volunteers.

Angelina Namiba, direct services manager at Positively Women,
says the agency has also changed significantly since two
HIV-positive women stuck up posters calling for other women to join
them in 1987. The London-based organisation now helps about 1,000
women across the UK and has 17 full-time staff and 45 volunteers.
While the agency helps women from all ethnic backgrounds, it
started a number of support groups for women of different African
backgrounds in response to client demand. It also runs treatment
support groups about the importance of adherence to medication and
regularly refers women with immigration issues to appropriate
agencies. Namiba says all of Positively Women’s direct services
team are HIV-positive women so they can show clients it is possible
to live a “normal life”.

As clients have changed, so have the sector’s resources. After
1996 health authorities switched their funding from supporting HIV
prevention work to covering the cost of combination therapies.
Jean-Emile Yegba-Pouth, support service manager at the HIV support
agency for black and African people Blackliners, says demand for
its services have surpassed funding. “We can’t argue with the level
of funding because we want to survive,” he says. “We take less
money for more work because the service is needed by the
community.” Yegba-Pouth is concerned the sector’s under-funding
will indirectly encourage the spread of HIV. “What policy makers do
not understand is that it will cost more in the long run if
agencies are not funded.”

Sekhon says changing priorities in funding mean all HIV agencies
have had to be creative with how they spend money. “From 1996
onwards health authority budgets got eaten up by treatment costs
because of the success of the combination therapies,” she says.

While on the surface THT appears to be the most successful
agency it is not without problems. Some £6m of annual £9m
turnover is derived from contracts with the Department of Health,
primary care trusts and social services. It raises the remaining
£3m itself. Ridley says: “HIV and Aids are hugely difficult
issues to raise money for because of the stigma that still
surrounds them.”

So why have some HIV organisations survived the dramatic changes
the sector has experienced? THT can thank its strategy of merging
with smaller organisations. Over the past three years it has merged
with nine different community-based charities and incorporated the
services of Body Positive. Ridley says: “The HIV sector needed a
strong organisation that could withstand a difficult operating
environment.”

Yegba-Pouth says Blackliners has flourished because HIV funders
and stakeholders support its work, while Namiba credits Positively
Women’s willingness to change after 1996 for its success. She says:
“We make sure we develop services to keep up with funding
changes.”

So what is the future of voluntary agencies providing services
to clients with HIV and Aids?

Philip Gatter, a senior researcher at South Bank University’s
social science research centre, says they must respond to the
growing number of people with HIV who live “normally”.

In September he and Peter Keogh from Sigma Research will start
work on a two-year study on behalf of Positive Futures, a
partnership of THT, the UK Coalition, The Globe Centre, Positively
Women and Chalk Farm Oasis. The research, funded by the Single
Regeneration Budget, will look at what HIV-positive people want
from their future, including employment.

¹ Public Health Laboratory Service Aids Centre
Aids/HIV quarterly surveillance tables cumulative UK data to end
March 2002