Tuberculosis (TB) is such an old disease that it's even referenced in the Bible. It's also a major cause of death in people with HIV worldwide, with over a million people believed to be coinfected, due to a lack of access to treatment.
When it comes to stigma, this communicable disease paved the way well before HIV came on the scene -- it went centuries without effective treatment and had high fatality rates, and has been known to affect members of marginalized groups. Many laws worldwide single out TB for the types of policies of monitoring, quarantine or even criminalization that AIDS activists have battled for decades.
Now, people with TB and their allies have issued an open letter, calling for the leading global TB association to drop stigmatizing and criminalizing language from the papers it publishes and from the abstracts at its conferences.
The Community Research Advisors Group (CRAG) and others sent their open letter to the International Union Against Tuberculosis and Lung Disease (known as the Union).
At last year's conference in Barcelona, we were surprised and disappointed to see many abstracts and presentations that included words that we, as a global TB community, have agreed to no longer use because of their stigmatizing connotations. As far back as 2011,the Stop TB Partnership (STBP) published a Tuberculosis Terminology Guide, encouraging the retirement of criminalizing and stigmatizing language like 'defaulter,' 'suspect,' and 'TB control' from the global TB discourse. For example, the Guide recommends replacing these terms with "person lost to follow-up," "person to be evaluated for TB," and "TB prevention and care," respectively.
The letter notes that the Union, which runs the largest TB conference in the world and publishes the International Journal of Tuberculosis and Lung Disease, can lead by example in this area and affect the policies and practices of others. It suggests preliminary steps, such as a guidance note on language and a link to the Stop TB Partnership's Tuberculosis Terminology Guide when issuing the conference's call for abstracts.
Within a few days, the executive director of the Union, José Luis Castro, sent a response, thanking the advocates for voicing their concerns. He acknowledged that some of the terms used for many years can stigmatize people affected by TB, and that "ultimately the responsibility for providing TB effective and high quality treatment and care falls on the healthcare system, not on individuals impacted by the disease."
In his letter, Castro says that the Union is "committed to communicating in a manner that embodies respect for all people affected by TB" and will include the guidance and link to the language guide in their abstract submission instructions for the conference.
Julie "JD" Davids is the managing editor for TheBody.com and TheBodyPRO.com.