Good afternoon honourable Chair,
I am a TB affected survivor, the youngest from a family of eleven siblings. I live in the rural area of Guyana, South America. When I was nine years old, my Mom got very ill and she was diagnosed with TB. In those days, after diagnosis, persons would be quarantined in a secluded building in the community hospital. I did not know what her illness was then, but when I was older, my Mom disclosed to me why she was hospitalised for such a long period. Subsequently my father, who was the sole bread-winner of my family, was also diagnosed with this disease. These were the most trying times for my family.
Both of my parents were locked away from us. My eldest sister and brother took on the responsibility for our family. Every Sunday our family would visit my parents at the community hospital and they would look at us through a window from the hospital building. We could not have any physical contact with them. At such a tender age, I could not understand why my parents were locked away. I was fearful that I would contract the same illness and would be locked away also. This thought traumatises me still today. My father also raised poultry and planted cash crops, but when the neighbourhood knew that they were locked away in the hospital, no one bought any of our produce anymore. On many nights, we went to bed hungry, because there was no real source of income.
When my mom was released from hospital, she was treated with scorn even from her own family. At my young age, I could sense her pain. She tried hard to be brave, sometimes I saw her crying silently in our backyard.
I lived in fear that someone would out me in school and my teacher will make me leave class. The stigma we faced has a lifelong effect on my family and has followed us for three generations now. My Mom internalized this devaluing, leading to low self-worth and feelings of shame, disgust, and guilt.
PCB members and observers–These experiences were more than 45 years ago and I remember them like there were yesterday. That is how profound the stigma associated with TB impacted my life.
Reducing TB-related stigma is integral. TB-infected individuals perceive themselves to be at risk for a number of stigma-related social and economic consequences. We have made great progress with TB diagnosis and treatment in many countries, but if TB-related stigma and discrimination is not addressed as a cross cutting issue, there will be loss of progress in controlling TB related deaths.
I am calling on Member States to commit funds towards elimination of TB-related stigma interventions.
Agenda item 4, Follow-up to the thematic segment from the 42nd Programme Coordinating Board meeting
Delivered by Millie Milton, NGO Latin America and Caribbean
Tags: 43rd PCB Meeting