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Communications Platform for Tuberculosos to Supplement Mainstream Media: India

Author(s) Bharathi Ghanashyam1, 2, 3, 4, 5, 6, 7, 8
Affiliation(s) 1Journalists against TB, Journalists against TB, Bangalore, India, 2, , , , 3, , , , 4, , ,, 5, , , , 6, , , , 7, , , , 8, , ,
Country - ies of focus Global
Relevant to the conference tracks Advocacy and Communication
Summary Journalists against TB (JATB) is a communications platform created to supplement the information put out by the mainstream media on TB and to bring sharper focus to the issue by inviting participation from multi-stakeholders. Six journalists who have been active in the media have come together to create the space, which affords opportunities for dissemination of news on TB to focused audiences across the world. In the two years since inception, JATB has visibly demonstrated the need for such a platform and created good impact. This is evident from the response and participation, all of which is available to read on www.journalistsagainsttb.wordpress.com. JATB is completely unfunded.
What challenges does your project address and why is it of importance? JATB addresses knowledge gaps on TB, a disease shrouded in ignorance and misconceptions. It also complements mainstream media spaces by bringing various stakeholders together on one platform, exploiting the potential of new media. Consider these little known facts about TB.TB is completely preventable and curable. TB can be eradicated. And yet, in 2011, there were an estimated 8.7 million new cases of TB (13% co-infected with HIV) and 1.4 million people died from TB, including almost one million deaths among HIV-negative individuals and 430000 among people who were HIV-positive.Control of TB is governed by one V and two Ds – Vaccines, Diagnosis and Drugs. And as experts say, all three are outdated. The BCG Vaccine recently celebrated its 90th anniversary; the smear microscopy test, which is still the most widely used diagnostic tool is 125 years old and the most used TB drug is over 40 years old. And now we have MDR, XDR and XXDR TB which defy treatment and diagnosis.

TB is not a disease that is confined to the poor. TB spreads more rapidly among economically weaker people living in congested areas without access to good nutrition and healthcare, but it is airborne and spreads easily to attack anyone who is immune compromised. It can kill if left untreated.

How have you addressed these challenges? Do you see a solution? JATB has identified key challenges to the control of TB and created a platform that can discuss better ways to disseminate this information among stakeholders. Among the needs and solutions that JATB has identified for more effective TB control are greater awareness on its preventable and curable nature, far greater political will towards eradication and most importantly, larger investments for prevention, diagnosis and treatment. Framing these issues in a manner that get public attention becomes equally important. Failing this, discussion around TB can remain confined to academic and research groups, and the medical fraternity.In several countries such as India, TB control programmes are government led and run. While India has become known for a very effective programme, there is also a highly unregulated private sector at work which hampers TB control efforts through the use of inaccurate diagnostic tools such as serological tests and wrong treatment protocols. There is evidence that at least 1.5 million serological tests are performed in India every year. At $10-$30 per test, the cost of testing, plus the cost of TB drugs wasted on treating hundreds of thousands of patients with false-positive results, rival the entire Indian TB control program annual budget of $65 million. These tests are available in at least 17 of 22 highest TB burden countries, from China to South Africa to Afghanistan. This situation needs to be addressed and requires stronger advocacy. JATB has worked actively towards this as well.Recognizing social media as a powerful tool for advocacy, JATB has used it to complement the mainstream media to spread awareness around the curable and preventable nature of TB. This is based on an assumption that greater awareness by default will increase demand for treatment, thereby driving higher investments for the development of newer vaccines, better drugs and new diagnostic tools. JATB does this by publishing and disseminating expert opinion, real life incidents, discussion, debate and news on the latest advancements. JATB is a space dedicated solely to furthering debate on TB and does this by actively connecting decision makers and planners together. It has also been actively advocating for greater investments in media advocacy by the TB sector. JATB has worked actively to advance the debate around TB and make it relevant to the general public, policy makers and other stakeholders.
How do you know whether you have made a difference? JATB, within the first year of being founded found wide ranging acceptance among stakeholders, be it agencies working on the ground, governments or others. This acceptance and support has been on the rise since then. JATB, owing to the position it enjoys in the community as a voluntary space that affords opportunities for unbiased debate, has also pursued specific causes – such as advocating against the use of ineffective diagnostic tools for TB. This has included interfacing with the company that manufactures such tools and publishing their responses for the public to see, as also forwarding these replies to relevant government departments for action. Directly or indirectly it has achieved impact. That it makes a difference is evident from the fact that some of the most renowned experts on TB in the world have written for it.A story published on the blog won the WHO Stop TB Award for Excellence in writing on TB in 2011. In the same year, JATB was invited to present a session Lessons that can be learnt from a Health Journalist at the Childhood TB Conference held by European Centre for Disease Prevention and Control. This is clear evidence of the fact that such a platform is needed in the TB sector. Needless to say if this media platform can work for TB, it can work for most any other issue.As proof that JATB is making a difference, two documents are uploaded through the option later in this application. This further strengthens the value of the initiative. JATB has actively advocated for investment in the mainstream media for training and fellowships and this is also beginning to make a difference. Wider acceptance and knowledge among the mainstream media will increase visibility for TB.

The most important factor is probably that JATB is completely voluntary and unfunded. Despite the complete lack of any financial compensation, contributors have come forward to be part of JATB, enriching it with credible and useful content. This clearly points to the need for such initiatives as well as to the impact.

Have you or the project mobilized others and if so, who, why and how? There is definite evidence that JATB has mobilized the TB sector at several levels. At one level it has brought academicians, researchers and experts together. At another, there is demand from activists and community members for information as is evident from the readership of various blog posts. JATB primarily set out to provide an alternative space to the mainstream media, which did not find TB a worthy enough topic to give space to.
JATB is now a part of several important discussions around TB in the country as well as internationally. JATB has been invited to either speak at, or contribute to the debate in each of the segments it addresses. Notable among these are JATB’s representation at media events, TB conferences or consultations. JATB is now considered a valuable partner in the fight against TB.By publishing his story on the blog, JATB has mobilized some funds for the treatment of an HIV+ boy who has suffered multiple attacks of TB. JATB also set aside a portion of the award it received for the treatment of the child.The very fact that JATB was considered worthy of the WHO Stop TB Award for Excellence in writing on TB, on par with publications such as the New Yorker, is irrefutable evidence of its acceptance of and value in the TB sector.
When your donor funding runs out how will your idea continue to live? This question is not relevant to JATB as it has not sought or accepted funding from any organisation or individual to keep it going. This adds strength and sustainability to the space. It is however important to say here that the one challenge JATB faces is its inability to exploit the full potential it affords for becoming an even more powerful vehicle for advocacy on TB. This is owing to the fact that it does not get full time attention from the members of the group who are all contributing on a voluntary basis. While its biggest strength comes from the fact that it can be completely unbiased, owing to its voluntary status, this also becomes its biggest challenge as it becomes difficult to give it the attention it deserves. JATB is giving serious thought to how this challenge can be overcome without having to ally with one group or the other, should it become necessary to seek or generate funds to make it more vibrant and useful.