First Stop TB Partners’ Forum Opens in Washington, D.C.

Washington, 21 October 2001

Representatives of 19 of the 22 countries that, together, account for 80% of the world’s TB burden of disease, as well as almost sixty partners and ten bilateral partner/donors converged on the nation’s capitol this evening for the reception that officially opened the first Stop TB Partners’ Forum.

The programme was opened by Petra Heitkamp of the Stop TB Secretariat, who introduced Adam Wanner, President of American Thoracic Society, an NGO which is one of the official hosts of the meeting. He acknowledged the contributions of such partners as the Governments of Canada and the Netherlands, the Soros Foundation, USAID, the CDC, the World Bank and WHO that have together funded this Forum. Dr Wanner recalled that the ATS was founded 1905 and that today a number of its thousands of members were international.

‘Why we are here?’ he asked. ‘To highlight our programmes of course—but, beyond that and perhaps more importantly—to support people who have TB, who have survived TB. Tonight we will bring you three personal stories. The theme—‘The Human Face of TB’—is meant to feature personal accounts.

TB survivors’ testimonies: The first was testimony was that of Ram Khadka (Nepal) whose story of tragedy mixed with cure and commitment to help others suffering the same plight. Ram recounted that both his parents had contracted, and eventually died of TB, while he and his brother had been healed.

‘My father had simple TB,’ Ram recounted, ‘but my mother developed multidrug-resistant TB. She was hospitalized and it was while I was searching for her in the hospitals of Kathmandu that I got TB myself.’ But both Ram and this brother took advantage of DOTS and, after a stringent nine-month regimen, Ram was completely cured. ‘I owe my life today to DOTS,’ he said.

Now, in the 18 months since he first told his story at the March 2000 Amsterdam Conference to Stop TB, Ram has launched a Nepal-based NGO, ‘Fight against TB & HIV/AIDS’ that is dedicated to changing attitudes and strengthening social and governmental commitment to TB control throughout the world.

‘I am a realistic. I had TB and I survived. But more than 8,000 people die of TB each year in Nepal – it is one of our burning problems. We need your help—socially, politically, technically—to form an international team to work for the alleviation of TB.’

Johannes Linn, World Bank Vice-President for East and Central Europe, presented his testimonial via video. Only seven years old when he contracted TB as a child in post-World War II Germany, he attributed his susceptibility to the overall conditions of deprivation, malnutrition and poor health. Johannes got pneumonia and was treated with the newly developed drug streptomycin.

As was the treatment in those days, Johannes spent the next 4-5 months, immobilized and enveloped in blankets, on a sunny alpine balcony, breathing what was hoped to be ‘curative’ fresh air. ‘I wasn’t allowed to move…luckily, reading kept me going,’ he said. In 1954 he underwent major—and successful—lung surgery.

Linn says, ‘Today, once again, TB is widespread. We thought it was a disease of the past but that’s not true. Today in Central and Eastern Europe, it is an aggressive disease. We are very concerned, especially for the many people in prisons. I am glad to see that the World Bank has taken on the TB cause worldwide. Now we are all more aware. We are coming together to take up the battle. It is a terribly important cause for all humanity. And, not to be forgotten, TB is an issue even here in Washington, D.C.’

The evening’s closing testimonial was given by Paul Mayho (United Kingdom) who first contracted HIV/AIDS as a 19-year old student nurse in 1990 and later developed MDR-TB. ‘The devil’s alliance’ Paul called TB and HIV. Each exacerbates the other. He was afflicted with both.

But Paul approached his situation with attitude, publishing his first book entitled Positive Careers in 1996 and a second, The Tuberculosis Survival Handbook, in 1999. ‘Today,’ he writes in his book, ‘my life is very different. It has taken time for the psychological wounds to heal. It was the most frightening, lonely experience of my life. I was ravaged both physically and mentally.’

‘You think you’re not alone? I never felt so alone as in my physical isolation. Isolation is aloneness that feels forced upon you, like a punishment. Solitude is aloneness you choose and embrace. Great things can come out of solitude, out of going to a place where all is quiet except for the beating of your heart. I was truly and, were it not for DOTS, I would not be here with you now.’

As for TB itself, as Paul writes in his manual for TB patients, ‘the disease is increasing in prevalence. We are no longer searching for a cure for TB: we have one. The problem lies with the length of treatment and the degree of commitment required. For those … who have tuberculosis or who have been on long-term treatment, my message is a simple one: keep taking the pills. There is life beyond this. I know that it’s hard but making the choice not to take them may prolong your own suffering and put others at risk.’

‘As for HIV, patients have always been given choices about their treatment. But with TB, if you want to get well, you have no choice. You have to take your medication. It’s a huge amount but you must take it daily.’

In closing, addressing participants in the Partners’ Forum, Paul also served up a dose of reality, saying, ‘This week the Global Plan to Stop TB will be launched. And you are all instrumental. But TB is more just another disease. It is a global plague and while it’s all very good to endorse declarations and guidelines and plans and such, in end effect you must have action. Nothing less will do.’