For those advocating for more funding and programs to fight tuberculosis, a common lament has been that few people see those who suffer from it – and that the assumption is often that the disease affects only poor people in far-away places.
But at a session this week at the Global Health Council conference, faces of TB emerged, and they powerfully made the argument that not enough was being done to fight the disease.
Gerry Elsdon, a popular South African television personality, was one, telling her story at a session sponsored the Lilly MDR-TB Partnership and the International Federation of the Red Cross and Red Crescent Societies (IFRC).
Elsdon said that after unsuccessful attempts to become a mother, she was screened for tuberculosis and learned that he had been infected with the disease. Pulmonary specialists found she did not have TB in the lungs, and therefore was not infectious. But a physician friend had other bad news: The doctor said TB is the biggest cause of infertility among women in rural areas. After further testing, Mycobacterium tuberculosis was found in the wall lining of her uterus. She immediately went on treatment, and was cured after nine months. But, she would learn, she also had become infertile.
After waiting in long lines and unventilated clinics for hours to seek treatment with dozens of other TB patients – she was No. 169 in the queue — Elsdon realized “TB sufferers do not have a voice, and TB patients do not have a say.”
She told the Global Health Council audience that TB doesn’t have the voice, recognition, funding, marketing ploys, or “sexiness” of other diseases, such as HIV/AIDS. She explained that women in particular suffer disproportionately from the disease, as they must leave their primary roles as family caregivers to seek treatment, which lasts for months.
These experiences compelled Elsdon to petition the government to do more for TB patients, leading her on a path of advocacy for the past nine years. Still, she said, even after nine years of fighting against this disease, she feels like she has only taken small steps forward due to the enormity of the problem.
Teresa Rugg, director of the TB PhotoVoice Project, then shared the story of a friend, Claudia Lacson, a TB caregiver who was a graduate student at the University of Georgia when she was diagnosed with TB meningitis. Lacson was pregnant. Her child was born 22 weeks prematurely, and passed away. Claudia died two months later.
Her husband, Romel Lacson, established the TB PhotoVoice Project in his wife’s honor, continuing his wife’s impassioned work against the disease. The Project allows TB patients to articulate their struggles with TB by taking photographs of their surroundings and artistically representing how this disease affects their lives and communities. By giving them a voice, the Project hopes to empower TB patients and have them engage in dialogue with policymakers and others so that TB receives greater attention.
Gini Williams, the TB Director of the International Council of Nurses, which works to build capacity among TB caregivers, emphasized the importance of working to integrate all health services which are integral to women’s health. She said it is not only essential for maternal and child health services and HIV/AIDS services to be integrated, but also to integrate TB services as well in areas where women are at particular risk to become infected. Williams suggested that simple steps be taken, such as providing TB services at PMTCT clinics.
Elsdon went further to say that governments should be aware of the devastating effects of TB in every policy area, as TB is not only a health issue but a development issue.