We, survivors of TB and other lung diseases, here, on the 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, mind you, and we have survived. Our voices, our experiences, and our stories count. We are to be heard, and we are to be listened to and acted upon.
You say you know the science of our diseases.
WE say we know the pain of living with them.
You say that diagnostics are hard and expensive to provide.
WE say that late diagnosis destroyed our health and lives.
You say that developing new drugs is expensive, but
WE say that it is more expensive to lose our hearing, to lose our sight, and lose our livelihoods.
You say that 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-centered 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 ever hope you will ever have to know, but, where are we at your tables? On your panels? And 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, and 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 system.
You know, many of us did not choose this as some sort of a career path.
It was chosen for us when we fell ill, and it has now become our life’s work, often without any 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.
Footage courtesy of 50th Union World Conference on Lung Health