On 29 October 2019, the first ever Survivors Summit was held in Hyderabad, India, just prior to the 50th Union World Conference on Lung Health. This entirely peer-driven meeting brought together survivors from over 10 countries, whose lives have been marked by TB, tobacco use, asthma, COPD, and other lung diseases, to harness the power of the community to produce a more coordinated global advocacy effort.
The attendees produced the following Survivors Statement, which was then presented in the conference Opening Ceremony by survivor Nandita Venkatesan.
We, survivors of TB and other lung diseases, here on this 29th October 2019, at the first ever Survivors Summit in Hyderabad, India, call on all attendees of the 50th Union World Conference on Lung Health and around the world to hereby commit that from now on, you will do nothing about us without us.
We have walked the difficult path of these diseases and we survived. Our voices, our experiences, and our stories count. We are to be heard, we are to be listened to.
You say you know the science of our diseases.
WE say we know the pain and stigma of living with them.
You say that diagnostics are expensive and hard to provide.
WE say that late diagnosis destroys our health and lives.
You say that developing new drugs is expensive.
WE say it is more expensive to lose our hearing, lose our sight, lose our livelihoods.
You say it is difficult to increase funding for R&D.
WE say that without more government investment and support, our brothers and sisters will continue to die.
We do not need you to watch us take our treatment. We need holistic, integrated, people-centred assistance and care.
None of us would be here today without you.
Your work revolves around the diseases that we know more intimately than we hope you will ever have to, and yet, where are we at your tables? On your panels? In your publications? We all come here with the same goals – finding cures, finding answers, finding ways of improving the lives of those stricken with these diseases.
We are not cases, we are not burdens, and we are more than just patients.
We are people.
We have a right to life.
We have a right to dignity.
We have a right to information, and education, and work.
We have a right to health and to benefit from scientific progress.
We have a right to know our rights and exercise them freely, especially in our health care.
Many of us did not choose this as a career path.
It was chosen for us when we fell ill, and it has now become our life’s work, often without compensation for our time.
Work with us.
See us for what we are: experts in our field.
We cannot do this without you.
And you cannot do this without us.