“Nothing About Us, Without Us:” Patient Inclusion at the 45th Union World Conference on Lung Health

Editor’s Note: This week, Del Garcia, MCN’s Director of International Projects, Research and Development is in Barcelona, attending the 45th Union World Conference on Lung Health, sponsored by the International Union against Tuberculosis and Lung Disease. The five-day conference features over 150 sessions with presenters from 65 countries. Here is Del’s description of the final plenary in this year’s conference. See part one here, and part two here.

In the last few years at the Union conference, members of civil society have given voice to the important idea of "nothing about us without us,” a reminder that decisions about research, treatment strategies, program design, and supportive services for TB should always include the voices of those directly affected by TB. As a final plenary to this year's conference, a panel of four former TB patients spoke of their experience with treatment and their subsequent efforts to assist others undergoing TB treatment. They spoke eloquently of their struggle to obtain the necessary medications, the difficulty of swallowing more than 20 tablets a day for two years and the lack of support available to them. At the end, they were each asked to make a final statement about what they wanted the participants of the conference to take away from their presentation. One previous TB patient, who now works to help people with TB and HIV, remarked that he wanted clinicians to remember that former patients, those who have made it through treatment, “can help you with your other patients. Be patient with them.”  It was important to be reminded that we are all in this together.