45th Union World Conference on Lung Health: TB activists speak out

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IMG_0731BARCELONA, Spain — At a symposium on Saturday entitled “Community driven solutions: present perspectives and future vision”, four community TB activists shared their goals and challenges as they work to elevate tuberculosis awareness and ensure humane supportive care to patients with tuberculosis. in  Three of the four, came from Fiji, the Ukraine, the Democratic Republic of the Congo and Moldovo. said they are TB survivors and all echoed a commitment to make the arduous treatment for tuberculosis more bearable for other patients through education and support.

Oleksandr Kulchenko and his organization, the All-Ukrainian Network of People living with HIV told his audience that he and his group got involved because of their concern over high death rates among people with HIV who contracted tuberculosis. Initially they were able to recruit primarily from the HIV community. TB health providers were not thrilled to have them involved, but it was easier going in regions where there were strong TB/HIV integrated services. They have had to work hard to recruit former TB patients who are not HIV-infected—it is the HIV negative volunteers who do work in TB hospitals since those with HIV would be too vulnerable to contracting TB in those care settings. Kulchenko is hoping to recruit more former patients, including more people who don’t also have HIV.

Mesake Navugona is well known in his home country of Fiji as a rugby player who played in a World Cup, but he spends some of his time educating young people and others about tuberculosis now that he has been cured of TB himself. “I was fit but knew little about TB. After I was treated, everyone forgot about me. Treating the disease is more important than the patient. We have to have a patient-based group that can help with patients,” said Navugona. “Medical professionals must remember that medicine should be patient-centered. Some would rather just imprison people for six months while they take their medicine. There has to be something in place after treatment to recruit people to help in awareness raising and training them to become good counselors.”

Patrick Nsimba Mata, trained as a mathematician and a physicist, is now a TB advocate in the Democratic Republic of the Congo.

“I became popular my country because I was a TB patient five years in a row,” he told he audience. Now he serves as the Deputy National Secretary and Project Coordinator for Club des Amis Damien, an organization of former TB patients working to support people with TB through health education and visits to health centers and patients’ homes. “Because we are former patients, we are well aware of the burden of the disease.”

Oxana Ruscineanu, a leader from the Moldovo National Association of TB Patients, and another panel member whose activism was triggered by her own bout with tuberculosis noted “when I was in TB treatment I realized there is a great need for information and knowledge.” Her work with patients has expanded to include efforts to forge partnerships. Citing the long period of tuberculosis treatment, and referring to TB clinicians, she said “during treatment, we either become friends or not. Patients and doctors should be good partners. Our vision is to increase partnerships between medical staff and patients.”

All but Navugona acknowledged financial support from the Global Fund to Fight AIDS, Tuberculosis and Malaria but they also are working to generate local government support since Global Fund money is time-limited.

Each of them referenced the “inhumane pill burden” involved in tuberculosis treatment, calling for new regimens and for country adoption of combination regimens in the meantime.

Kulchenko hailed this session in the conference. “This conference is a turning point the Union. It is the first time that community involvement is visible. At next year’s conference in Cape Town, we need to see more patients and more community leaders at the podium.” He suggested the International Union against Tuberculosis and Lung Disease (the sponsors of this meeting) organize a conference for former TB patients and community leaders to share their experiences with each other.

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