Contents:

(1) Understanding Stigma Through Experience
(2) Family and Community-Centered Counselling
(3) Advocacy, Implementation, and the Patient Voice

(1) Understanding Stigma Through Experience

I was diagnosed with drug-resistant TB in 2006, after a course of drug-sensitive treatment failed to clear the infection. It was a really challenging time for me. There was still this taboo and stigma around drug-resistant TB, and there was no support at all. Counseling was not available too, and no patient organization existed. I did not even know what drug-resistant TB was.

National policy in South Africa at the time required anyone diagnosed with drug-resistant TB to be admitted to a hospital, often far from home. Beds were scarce and people waited a long time for one, sometimes without treatment in the meantime. When patients left those hospitals before finishing treatment, their cases were reported on national television, with appeals to the public to send them back to a clinic or to a police station. It made you look like a criminal. That made people hide themselves.

The stigma did not only come from other people. I stigmatized myself even before the community did. I was pregnant, I was HIV positive, and I had drug-resistant TB. It felt like I was not clean enough, that I would spread the disease. My self-esteem was gone.

The way clinics were set up made it all the more isolating. The TB room is separated from the other areas, so once you are on that side, people already know you have TB. I had to wear a mask while others didn’t, and people would whisper, “why is she wearing that?” Even before the community said any of this out loud, I had already said it to myself.

(2) Family and Community-Centered Counselling

The first thing we have to do is to fight the stigma. People believe that when you have drug-resistant TB, you are more infectious, or that you must have stopped your treatment. Even some healthcare workers believe that. We are trying to change that thinking.

Much of that work happens through counseling designed for people with drug-resistant TB, which gives them room to express their frustrations and to identify what is standing between them and their treatment. Just because a patient has a disease does not mean they are a disease. Healthcare workers must sit and listen. What are the challenges? What are the obstacles? What are the frustrations?

That support has to include families as well. If we focus only on the patient, we put the responsibility on them to carry the information home, but stigma sometimes stops patients from disclosing their diagnosis. Even when they do disclose it, their families ask questions they cannot answer. When the family is included in counseling sessions, they understand better why they need to be screened and get preventive treatment.

The same challenge shows up in screening contacts. When close contacts are identified, they may refuse preventive treatment because they are not sick yet. Through counseling, we explain why preventive therapy matters before symptoms appear.

(3) Advocacy, Implementation, and the Patient Voice

Peer support carries a great deal of this work. Some patients face deep psychological and social challenges, and when they come together, they support one another and help each other complete treatment. People who have completed treatment become the proof that it can be done for patients who lost hope long ago of ever being cured.

Patients are also the ones who should be driving advocacy. They are the ones who experience the journey. They understand it, they know the challenges, and they are the ones who can push most effectively.

Where I still see a gap is between advocacy and delivery. We do the advocacy, but at the same time, someone must make sure the medication is actually available and accessible.