The following is an e-mail circulated on the Stop TB Advocacy Network from a TB patient named Pervaiz Tufail, location unknown. It is a powerful message from the patient’s perspective.
Subject: TODAY IS WORD TB DAY BUT WHERE AM I?
I heard Akram died of TB today, last week Rizwan died and I am afraid who will be the next one to die? May be I myself?
Today, 2000 people will die of TB without knowing billions of dollars have been offered to governments for their diagnosis, treatment, care and support.
Today is world TB Day and I am waiting somebody who can assure me that I will not die with TB, MDT-TB or XDR TB. I am a patient with TB, lives in Shahdara, a samiurban town in Pakistan, suffering with TB for the last 8 years, have no money even to travel to hospital for my checkup. 24th March 2011, like many previous years, will be celebrated for what? I am unable to understand. I need money to eat, travel, checkups and medicines-I wish I have money to travel and attend World TB Day.
I am hearing that TB day will be celebrated in hotels where number of policy and decision makers, international donors and program staff will gather to talk about strategies for TB patients, free diagnosis and medicines. I am also informed that food and refreshments will be served. Such events will cost millions of dollars and I was just estimating such costs can save the lives of thousands of TB patients. Grand reports, wonderful speeches, TB patient’s miseries, lack of medicines and other issues will be highlighted. Policy and program people will inform Ministers about their achievements, people will clap and Ministers will announce donations for TB patients. Where the TB patients are and be in such gathering? Most probably not in those halls where speeches for TB patients are made, if yes, sitting at back benches, knowing nothing what is happening as speeches will be in English which few TB patient present in the hall (if they will be there) not be able to understand.
This year, like other previous years, I will wait somebody who can tell me that TB patients were chief guests, they made speeches, were listened by authorities and promises made last years were fulfilled. I am still waiting somebody who can tell me that all TB patients have been tested accurately, treatment has been made available free of cost to all tested and diagnosed people and there are no funerals today because of lack of testing, medicine, travel hazards, food and nutrition or doctors in remote areas.
People with TB are still afraid of telling their status to public, stigma and discrimination is till affecting TB patients and preventable deaths are still on rise. Husbands, fathers and brothers are still unaware of the symptoms, mothers, wives and sisters are still hesitant getting checkup for TB. Children and childhood TB are far away in programs.
I heard there is a body called WHO taking care of TB patients but I never know where they are? I was also told that there is a National TB Control Program which is responsible for eradication of TB. I heard they have huge offices where there is no electricity short fall, travel in luxury cars and provided with fuels and accommodations. None of my village people knew about their address to contacts. One day, a representative of TB Control Program whom I was seeing first time throughout my treatment period in my locality introduced me with TB Patient’s Charter and first time I came to know that TB patients also have rights.
People use to say, there is no money for treatment while billions of dollars have been donated to authorities. Who will tell me how much have been spent on TB patient’s empowerment? If I can tell the authorities, I wish to tell them that I am with all my family living below poverty line. Cost of medicines has increased 100 times and I am even unable to eat food. Healthy and nutritious food is a dream for me and my family.
Can somebody tell me where to go to tell the authorities? Can somebody push me in such a meeting where I can speak and tell that TB is not on the political agenda as priority. There is no investment at the community level to directly work with TB patients, poverty eradication within TB patients and provision of patient friendly services at grassroots. TB patients are chained and locked even these days and treated badly. Why there is no TB Patient’s Advocate within TB Patient’s Community?
My call to all TB patients is to hurry up, get up and speak up. Break the silence, ask for money which is coming for you and enjoyed by others!