Aids acitivist Winstone Zulu has lost three brothers to tuberculosis.
He tells Susan Cole about surviving
co-infection and the battle to get it on the global agenda
It must be difficult for you having two sexually transmitted conditions,”
said Zambian Aids activist, Winstone Zulu to me over a south London pub lunch.
“What do you mean?” I inquired, mystified. “You know, both
HIV and pregnancy,” he laughed, his eyes twinkling with mischief.
Lunch with a legend
It was surreal sitting over a plate of sausages and mash with one of the world’s
leading advocates on HIV/Aids and TB. Winstone is something of a legend. Nelson
Mandela singled him out for praise at the Bangkok International AIDS Conference:
“I want to acknowledge and thank Winstone Zulu”, he said. “There
have been so few TB survivors who have stepped forward to share their stories.
We need more advocates like Winstone to tell the world about TB and the effect
it has on so many millions of people.”
I met Winstone for the first time in Bangkok earlier this year. I expected
an intimidating and distant activist, burdened with gravitas and misfortune.
Instead I found a man sparkling with humour and humanity, with a surprising
fondness for Positive Nation. When he visited the UK last month to highlight
the plight of people co-infected with TB and HIV in the developing world,
he was eager to talk to PN and sample stodgy British pub grub.
Winstone was born in 1964 in Lusaka, Zambia, the sixth of 13 children. He
won a scholarship to study political science in the Soviet Union in 1990,
but was diagnosed HIV positive through a routine immigration HIV test. He
became the first person in Zambia to publicly acknowledge being HIV positive.
In 1997 he began to develop symptoms of tuberculosis, but his doctors were
slow to diagnose TB.
“I had pains in the chest, night sweats, weight loss, loss of appetite.
I went to the hospital where they did a chest x-ray and sputum test. There
were lots of people coughing in the clinic. There was even a power cut. When
I went back after a week they told me the tests indicated I didn’t have
TB.” Luckily, Winstone refused to accept their diagnosis.
“My younger brother had TB and said that the symptoms I was experiencing
were very similar to his. He gave me drugs prescribed for his TB which I took
and I immediately started to feel better.
“Within two to three days I’d experienced a big change. I went
back to the hospital and told them that in fact it was TB. Four months later
they told me they had just found TB from my tests. I could be dead now if
I’d waited for them to diagnose it.”
A deadly partnership
Three of his brothers, as well as a number of other family members, have since
died from TB. Winstone’s family story is typical of Zambia’s health
statistics, where two out of three TB patients are also HIV positive and life
expectancy has dropped to 42 because of the deadly disease combination.
Winstone passionately believes many deaths could be prevented if TB diagnosis
was improved: “TB is the last thing they check for. In situations where
there is so much HIV they should immediately think of TB. So many people lose
their lives as a result of TB not being diagnosed. My brother-in-law started
treatment too late and died.
“The system has to change. We need new diagnostics. You can’t
defeat TB without detecting it. It’s the most infectious of the opportunistic
infections. TB and HIV are a deadly partnership. If you have TB, chances are
you’ll infect 15 -20 people before it’s detected.”
Winstone began working to raise international awareness of TB and HIV co-infection
last year. He worked with Results USA, and during his trip to the US spoke
to Congress, churches and the media. Entry to the US was problematic and distasteful.
He ended up with “paroled” stamped into his passport in large
letters, as if he was a criminal. He has worked closely with Case Gordon,
a charismatic TB activist diagnosed with multi-drug resistant TB, as joint
president of the pressure group TBTV.
Today, two-thirds of all Zambian TB patients are also living with HIV/Aids.
“In Africa if someone dies of Aids, chances are they’ve died of
TB. More people living with HIV die from TB than from any other illness. It
is often regarded as a disease of the past, but that simply isn’t the
case. If the developed world doesn’t put TB on the agenda, it’s
hard for the rest of the world to react. There’s a lack of awareness
in Africa about the prevalence of TB. The UN and WHO need to show Africa that
TB is on the agenda.”
He feels the overwhelming incidence of HIV in Africa has led to TB being over-looked.
The reality is however that many people living with HIV could be saved if
they had access to TB treatment.
“When HIV came in it made the problem of TB seem mild. Other diseases
were sidelined because of HIV. Aids is a vague term, it’s an abstract
thing. People need to think of the opportunistic infections that cause Aids.
Often it’s TB that causes an Aids diagnosis. TB is the most common opportunistic
infection.
“I’m HIV positive. I took the TB drugs when I had TB and I’m
here today. My brothers were HIV positive too. They had tuberculosis but they
didn’t take the TB drugs because they were not available, and they are
no longer here.
“We all know antiretrovirals are ultimately what we need. They are medications
that are available now that have shown they can prolong life and improve the
quality of life. But for many of us the dream of getting antiretrovirals is
much more far-fetched than the dream of getting drugs for ten dollars that
can cure you of TB. When I see someone living with HIV I say: ‘If you
don’t have antiretrovirals now, you should go and get checked for TB.
If you have TB it can be cured.’”
Pushing the agenda
Winstone emphasises the importance of patient pressure in the fight against
TB/HIV co-infection.
“At the beginning it was purely a medical thing. Now we see the connection
between poverty and TB. There is politics involved here and you can’t
cure that in a laboratory. You need community involvement and social mobilisation.
It’s time for TB patients to push for action on the research side. We
need to say: ‘Look we are here and we need new drugs and treatment.’ This is missing at the moment.”
Winstone’s recent visit to the UK has lasted for two weeks, during which
time he has been extraordinarily busy highlighting the prevalence of TB/HIV
co-infection. He has spoken at a number of events, including a special briefing
at the House of Commons. He was due to met with Gareth Thomas, Parliamentary
Under-Secretary of State for International Development, the day after our
lunch.
He was enthusiastic about his trip to the UK and cautiously optimistic about
its success: “It has been very productive, particularly in Scotland.
I was impressed by the reaction of the Royal College of Physicians Scotland.
The president Professor Neil Douglas met with the Deputy Minister of Health
in Scotland. There were very practical outcomes. They saw they could play
a leading role. They could see the importance of putting co-infection on the
agenda. They are going to write to the key members of their group who will,
in turn, write to Gordon Brown.
“The UK will be well placed next year in pushing the TB agenda. I’m
here to take advantage of the UK’s position regarding G8. I’ve
met with community support groups and done an interview with the BBC World
Service and CNN. I’ve met with NGOs and medical professionals all of
whom have been very encouraging. We’ve met lots of influential people
but we have to wait and see what impact it has.”
