PN speaks to Octávio Valente
of Grupo Pela Vidda, an organisation that has lobbied hard to ensure Brazil’s
success in dealing with HIV
Words Martin Flynn
Images Alex Caballero
Back
in the early 1990s, the World Bank estimated 1.2 million Brazilians would
be living with HIV by 2000. But a combination of political will and dogged
but well organised activism proved the economists wrong. As of this year,
the number of people living with HIV in Brazil stands at 600,000, half what
was predicted.
Part of Brazil’s success can be put down to the extraordinary influence
of Aids activists in non-government organisations (NGOs) that have driven
the country’s response to HIV and Aids. This response includes free
condoms and HIV drugs, needle exchanges and widespread testing and prevention
campaigns. And it has paid off: providing early access to free HIV treatments
has saved the country more than $2 billion in healthcare costs.
Envy of global activists
NGOs played a key role in this success; working with the public sector to
provide services, care and hope to Brazilians living with the virus. Pressure
from organisations like Grupo Pela Vidda (Group for Life) forced the government
to make a stand with drug companies to ensure a supply of low-cost drugs.
Currently 170,000 people receive 17 different antiretrovirals free through
the public health system. Of these, eight are generic versions of the drugs
made at home or imported from India. The rest are made by the multinational
pharmacos. Through education, information and campaigns, Brazil’s NGOs
have helped to reduce transmission, stigma and discrimination. They are leading
advocates of HIV positive people’s human rights at home and globally
with an access to leaders and a power envied by HIV activists the world over.
Putting on the pressure
I met Octávio Valente, president of Grupo Pela Vidda, this summer at
the International Aids Society conference in Rio de Janiero. Despite his strong
working relationship with government ministers, Octávio decided to
use his conference address to step up pressure on them. He was angry the Ministry
of Health had retreated on its plans to issue a compulsory licence to locally
produce a generic version of Abbott’s drug Kaletra (lopinavir/retonovir).
Aids activists saw the new agreement with Abbott as a “step backwards”
that threatened the sustainability of Brazil’s treatment policies with
“harmful consequences” for people living with HIV. Despite this
note of discord, Octávio is generally enthusiastic about the Brazilian
Aids Programme. “It’s a great success,” he says. “It
allows free antiretrovirals (ARVs) for all and every month people get free
medicines through the public health system.“But there are still many
gaps. We have to fight all the time to get medicines to treat opportunistic
infections. And patients wait months for appointments or results from viral
load testing.”
Generic success
Grupo Pela Vidda collaborates with international groups like Médicins
sans Frontières in their political battles with pharmacos and the US
to get cheap ARVs. “We have the voice to represent people with HIV in
Brazil and the government does listen to us. These days we make many generic
ARVs. We buy the basic materials and ingredients from India and China and
both public and private companies here are now making generics.“Even
though I’ve been campaigning for Brazil to make more complicated ARVs,
such as protease inhibitors, I don’t expect it to happen easily or even
within a few months. “It will take time to get the technology and production
right. We need to be expert and qualified to produce more complex drugs which
are bioequivalent to the branded products at the same level of quality. But
we have to start soon. This is the moment we have to go forward and we cannot
go backwards. And we’ve achieved the political will to continue the
process.”
Spiritual
home
Diagnosed with HIV in 1982, Octávio started taking ARVs in 1996.
“I came to Grupo Pela Vidda after my first opportunistic infection with
tuberculosis and it has now become my spiritual home. “I was looking
for a safe space to meet others with similar problems. I needed emotional
support and by participating in self-support groups I became more empowered
and more committed to the organisation.”Based in downtown Rio, Pela
Vidda has 15 staff and around 200 volunteers to support the 2,000 people that
pass through its doors each year. It works in
prevention, activism, assistance and care.“We work with all people affected
by HIV and Aids. It doesn’t matter if a person is infected or not. That’s
why we use the expression, ‘People Living with HIV and Aids, independent
of their serology’.“The important thing is an individual’s
capacity to collaborate and contribute. We have a home care project in which
volunteers are trained to provide practical and emotional support to people
who are sick at home. The organisation provides legal assistance, distributes
condoms regularly, works in schools and private companies, and runs safer
sex workshops. “We only get around five per cent of our income from
the Brazilian government. The rest comes from international development agencies
from Holland, Britain and Germany. We’re not in the hand of any specific
funder, the government or pharmaceutical companies. We are independent; free
to take our own decisions and able to criticise when we need to.”
Vibrant…
and corrupt
Brazil fills almost half of South America and is the size of Europe. Its population
of 175 million is a vibrant mix of the descendants of European immigrants,
African slaves and indigenous natives. It is huge, with incredible resources.
It has the potential to be as economically powerful as the US but is burdened
by foreign debt and raped of its minerals and forestry. There is an enormous
gap between rich
and poor and Brazilian society suffers almost endemic corruption at every
level. Yet it has a vibrant democracy and a pluralist, multiracial, open society
where being happy and enjoying life is a more important priority than status
or wealth. In this environment, I wondered which groups were most affected
by HIV.“It terms of the HIV population, we almost have a balance between
homosexuals and
heterosexuals,” says Octávio.“In the beginning there was
a big concentration of HIV among homosexuals but now the situation is different
because the gays became more aware of the importance of prevention. And we
have a big epidemic in the south of the country among drug users.”
Changing attitudes
And what about the media’s portrayal of HIV in Brazil? Did it try and
stir up stigma and discrimination?
“It’s better now than at the beginning of the epidemic. Ten to
20 years ago there were lot of people dying of Aids so the media were desperate
for shocking images. “Aids was seen as something sensational and almost
glamorous. Now we have to deal with more invisible political and practical
issues.
“Stigma and violence against people with HIV is less of an issue now
because people are better informed. But we still face prejudice, particularly
in the workplace. Our legal department is constantly busy intervening on behalf
of positive people and trying to solve problems. “We don’t have
specific laws to protect people with HIV at work. However, we do have a federal
constitution that states that no one can be stigmatised for any reason. And,
of course, HIV can be part of this.”
Global reach
Grupo Pela Vidda also forges networks on the international stage with the
global HIV community. Octávio believes this work could be far more
effective if HIV groups were better organised.
“I can count on two hands the number of HIV organisations around the
world who have the skills and professionalism to do this type of work. The
international community of people living with HIV can be heard. It can lobby.
It has moral authority and can have political power. “We need our own
voice and not rely on others to advocate for us. People with HIV need to feel
empowered to talk and act for themselves; in their families, in their communities,
at work and even in politics. “But HIV organisations need to work together
rather than compete all the time. We should try and concentrate our demands
because we have common demands whether we live in South or North America,
Europe, Asia or Africa. When we come together as a worldwide HIV positive
community, we are much more powerful.”
Fighting for today
Does Octávio feel optimistic for himself and others with HIV?“Personally
I have to be realistic: not
optimistic or pessimistic. I have Aids. I’m also diabetic and co-infected
with hepatitis C. My HIV medicines are working very well but my liver is failing
rapidly.“Every individual has to try and get a good quality of life.
Life is here and now and not tomorrow. So fight for your life and fight for
your rights. And try and fight for the poor people with HIV and Aids in Africa
as I fought for the people in Brazil.
“I have tried to do my job in the best way I can. I hope I have had
a consequence in others lives from my activities. But you can’t fight
alone. You have to live your life and enjoy your life and do your best, even
with HIV, because every human has only one life.”
• www.pelavidda.org.br
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