24 March 2003

World TB Day 2003 is only 70 days away!

In this World TB Day Alert, you will find a request for TB patients’ stories along with some sample stories and guidelines on how and why to gather this information.

The theme for 2003 is People with TB, and the slogan is "DOTS cured me – it will cure you too!" The theme is designed to focus attention on former and current TB patients. The idea is to use these patients to show to potential new patients that TB can be cured with DOTS and that anyone can contract TB, and by doing so reduce the social stigma associated with it. It also emphasizes the need to involve TB patients as advocates and active participants in TB control.

Former TB patients make the best advocates for TB control. Those who have suffered from TB and are now cured are living proof of the effectiveness of the DOTS treatment strategy. Their stories put a human face to the disease and help people to understand more about TB symptoms, treatment and prevention.

A powerful way to ensure that the voices of TB patients are heard is to gather their stories and use them as resource and advocacy tools. You can use people’s stories to illustrate key TB control messages by including them in presentations, providing them as case studies to the media, sharing them in your community and inviting TB patients themselves to speak about their experiences at meetings and other events.

The Stop TB Partnership Secretariat is calling for stories of patients who have sought diagnosis, received treatment and been cured. These stories will be posted on the Stop TB website and made available to TB partners, the media and the general public. We are looking for stories with a good human interest angle that represent a range of experiences and illustrate key TB control messages.

Guidelines for Collecting Patients’ Stories

We are looking for stories from former patients who are dynamic, interested in being advocates for TB control and willing to speak with the media. Please note that all stories received will be posted on the Internet, and the patient may be asked to talk to the media about it.

The kind of story we are looking for is one that supports the key messages for World TB Day (see the Rationale: /events/world_tb_day/2003/default.asp#Background for the full list of messages).

For example, we want to encourage people with TB symptoms to get tested for TB. If a story specifically mentions the patient’s symptoms, this sends a message to listeners and readers that if they or someone they know has these symptoms for an extended period of time, they should get tested for TB. Stories from women, men and children from various socioeconomic backgrounds illustrate that anyone can get TB, another key message. Stories that specifically mention that their TB treatment was free send the message that DOTS treatment is free of charge through government clinics and also through private clinics in some countries. Finally, the story should show that "DOTS cured me – It will cure you too!"

If you are interviewing former TB patients for their stories or writing your own story, you may wish to keep the following questions in mind:

1. Name, age, place of residence, occupation.
2. When did you get sick? What were your symptoms?
3. How did getting sick affect you? For example, did you have to stop working or going to school, or did you have trouble caring for your family or carrying out other responsibilities? How did getting sick affect your family?
4. What did you do to get better? Did you try different treatments or different kinds of doctors and clinics before you were diagnosed with TB, or were you mistakenly diagnosed with other illnesses before being correctly diagnosed with TB? Where did you go to get diagnosed with TB?
5. How long did you suffer symptoms before you were diagnosed with TB?
6. After starting DOTS treatment, how long was it before you began to feel better?
7. How long was your DOTS treatment regimen?
8. Who was your treatment partner? How did your treatment partner help you to get better?
9. How did your health worker and/or doctor help you to get better?
10. How has DOTS treatment changed your life?
11. What advice do you have for people who think they may have TB? Or to other patients who are receiving treatment for TB?

Please send your stories in writing (no more than one page in length) by e-mail to the Stop TB Partnership Secretariat at: stoptbinfo@who.int. You can also send stories by fax to: 41-22-7914486. All stories received will be acknowledged with an email or letter, and they will be posted on the Stop TB website at: http://stoptb.org/events/world_tb_day/2003/Patient_Profiles/Stories.asp.
They may then be used by TB partners in advocacy campaigns or by the media.

The Stop TB Partnership Secretariat reserves the right to edit stories for length.

• You can find the entire content of this Web Alert on the Stop TB website at: www.stoptb.org/events/world_tb_day/2003/default.asp
• For more information on planning for World TB Day 2003, consult "Guidelines for Social Mobilization: Planning World TB Day", available online at: www.stoptb.org/events/world_tb_day/2000/assets/documents/tbguide.pdf or order a hard copy from the CDS Documents Centre by emailing: cdsdoc@who.int.
• For more information on World TB Day 2003, visit our website at: www.stoptb.org/events/world_tb_day/2003/default.asp or contact the Stop TB Partnership Secretariat at: stoptbinfo@who.int.