Despite seemingly insuperable odds, the HIV community has come a long way in 30+ years, even when a decade ago it seemed this disease would extensively wallop mankind. But as conference on Aids 2012 concludes, pleasing and disappointing people simultaneously by its very nature - if not physically present, one may not have read, heard or watched another disease discussed concurrently – unless, undusted from the headlines. This disease has been around for 1000 years, diagnosed with 100 year old tools and 40-60 year old drugs for far too long. If one is not a part of the ‘global health community decision-makers’ and has been affected by this disease in someway or the other – the uncomfortably bewildering question arise, over and over again – why is it still around and killing for so long?
Tuberculosis - combine it with HIV and we have created a painful pathway ahead for patients, policy makers and care providers. Widely dubbed as a ‘deadly combination or deadly duo’ – even with the co-infection of HIV and TB - you do not have to die from it.
Estimated 350,000 lives have been lost to TB and HIV co-infection in 2010 and it’s the number one killer among HIV patients. Good news is a million lives can be saved by 2015 treating and preventing TB in HIV patients. Also roughly about “910 000 lives were saved between (2005 to 2010) through coordinated TB and HIV services”.
But imagine a scenario where a woman with HIV and multi-drug-resistant TB is also pregnant. Now imagine the mental, physical and socio-economic burden coupled with logistical issues in accessing medicine (multiple tablets, injections) and cohesive care. She really does not need to die to wake us up, does she? HIV pregnant women are more susceptible to developing TB – 10 times more likely. A pregnant woman with TB also faces double risk of transmitting HIV to the unborn child. To prevent further unnecessary spread, death and pain, it’s significant to prevent development of TB in HIV patients and HIV in TB patients. And here’s where one of the challenge lies and according to ‘TB community’, much more can be accomplished.
But away from global conferences and high-level meetings, we asked what can be done at a community level in Saudi Arabia to devote more attention? Surely, HIV and TB are not our region’s major public health challenges; so why should we as young women care at all? – My naïve answer would be simply because we inhabit the same planet and indubitably, we all are a part of an interdependent network of communities. And it’s high time we construct a more informed and connected relationship between disease funding and receiving nations…communities burdened by diseases and communities less affected by it.
Local Action: developing ‘action-oriented awareness’
Can cross-cultural conversation positively change local view about a disease? Can a gender narrative persuade us to re-think the way we provide support and care to TB patients locally? Can photo-voice projects change the way we see TB patients globally?
On the 3rd of July, our organization dedicated a day to candidly and keenly talk about almost a taboo topic here in S. Arabia – tuberculosis. From my experience - this one word can evoke myriad of misinformed thoughts – enough to dehumanize you into a fearful object in split seconds.
The reactions my entire family experienced when my sister contracted TB two years back has been imponderably stigmatizing and marred with misconceptions. Doctor’s initial reluctance to suspect her condition ‘as possible a TB case’ led to delay in accurate diagnosis – we were told it could be pneumonia or swine flu or any other type of flu, but never TB.
She was isolated due to an active infection for almost a month - but it’s the ‘social isolation’ caused more pain than physical isolation. Tuberculosis has a definite cure unlike other diseases. However, it’s definitely not a disease of the past - so we asked ourselves why there are so many stigmas, deaths and abject apathy? And here’s where the forum emerged, meant for both medical and non-medical community, conducted in simple, jargon-free language with a passion to learn, collectively. We felt devoting 4 hours was enough to change the way few people thinking about TB in Arabia. This, inadvertently, turned out to be first-of-its-kind in multiple ways. We invited 10-12 dedicated local/ global voices, integrated web and physical platform; created content entirely catered to raise awareness in local communities, had TB survivors speaking about their ordeal for the first time here and accentuated women and children’s narrative. Why?
TB advance more progressively in women at the reproductive age than men. Genital TB affects women’s’ ability to conceive and pregnancy. Widely touted as the disease of the poor, poverty does play a major factor in developing active TB and since women account for over 60% of the world’s ‘poor’ – women in certain regions are excessively affected by this disease. Not to mention the consequences of social stigma, self-stigma, ostracizing and discrimination. Rea Lobo, a journalist and a former TB patient joined us live from India to talk about gender-based stigma associated with tuberculosis and her winning entry at a short film competition on tuberculosis instituted by the REACH- Lilly MDR TB Partnership “aiming to tap into the power of films to sensitize, inform viewers and bring about a structural change in public attitudes regarding tuberculosis.”
In her video, Rhea positively and bravely narrated about her TB experience but she mentioned ‘I could not find a single woman who would admit on camera that she had TB’. Makes you wonder what kind of stigma women across global communities may face with co-infection of TB+HIV! Not known to many but TB happens to be the top three causes of death among women of the reproductive age; it managed to take the lives of 320,000 women in 2010 globally and India remains one of the most high burden TB countries. Women in many places are less likely to access a health provider/setting providing TB care. But few studies show women are more likely to complete the entire months long or even years of treatment than men. “Speaking from my own experience and as a journalist – when I spoke to community workers they said a lot of women actually come and collect their medicines at night because they do not want anybody to see collecting TB medicines – they do not want their families know.. or neighbors to know” said Rhea.
At our “Childhood Tuberculosis” session, Linda Kelly (Scotland, UK) joined with her 13 year old son Jarvis Kelly, a former child TB patient. Linda touchingly narrated her experience as a mother of a child TB patient. Earlier this year, Euro News reported on her son’s TB condition to highlight the plight of children with TB in Europe. “He (Jarvis) played high-level football which was taken away from him when he contracted TB, he missed a lot of schooling and I think stigma is still around although we try to break that down” said Kelly. Almost ½ a million+ children become ill with TB annually and up until 2010, 10 million children worldwide had been orphaned because a parent died of TB.. Child TB patients also take the same medicine and dosage of adults. Linda’s presence helped dispel a widely adhered notion locally ‘TB is eliminated in Europe and developed countries’. It also helped underline the difficulties in diagnosing TB among children which often leads to treatment delays, increases the number under-reported cases globally. Overall, childhood TB has been a grossly neglected area of study/development for too long.
Sana Sajun joined us from Karachi, Pakistan at our ‘Media and Tuberculosis’ session. Sana works for exciting organization known as IRD (interactive research and development) and she talked about the “Tasweer-e-zindegi’ (photos of life) program initiated by IRD. The project gave cameras to women and men affected by TB and asked to document their challenges, experiences and factors that support them represented by series of photographs. The project uses a technique known as ‘photo-voice’ that empowers individuals to share their experiences and advocate for change. “Pakistan ranks 8th highest amongst TB high burden countries and despite publically available free-treatment and testing facilities – there were still an estimated 58,000 deaths due to TB in 2010 inside Pakistan’ said Sana. ‘And while we have made progress…the disease continues to be plagued by stigma, myths and misconceptions” These photographs and stories were shared at a gallery event with community leaders, practitioners, policy makers and people affected by TB and over 1000 visitors came to see at the Indus Hospital in Karachi. Participants in this project included TB patient’s family members and treatment supporters as well. Many of the participants have never used cameras before and some of them can’t read or write much.
“We really believe this project helped provide a really powerful and unique perspective view on TB which had not been seen before and highlighted the need to include people affected by TB as partners in the fight against TB.” she added. The project followed with a “Call to action” – calling on stakeholders to help create a supportive environment for TB patients.
We also had experts from various countries talking about innovative diagnostic tool; human rights based approach to TB and open source drug discovery initiatives like OSDD (India) http://www.osdd.net/
Saudi Arabia is not a high TB burden country, enjoys substantial political and financial power, and consequently has the capacity to move towards complete TB elimination which no country has achieved. And as J. Spicer, a senior strategist who joined us from STOP TB Partnership (WHO) mentioned “if any country can move towards TB elimination, it’s Saudi Arabia. It would set an example for the region and for the world… “
He also said “Looking at the Hajj (annual pilgrimage) it is clear that Saudi Arabia is at the crossroads for the world that brings together many citizens of other Muslim countries. “ From now and until 2015 when the Millennium Development Goals targets are due, about 2 million citizens of Muslim countries will die from Tuberculosis and 9 million+ will fall sick with TB. “And this can all be prevented’ said Spicer. ‘Islamic values such as ‘Sadaqah and ‘Zakat’ (obligatory and voluntary form of charity) from our perspective here in Geneva are something the world should follow on more.. not just the Muslim world. And this is a disease where the poor are affected and a disease where much more can be done.“ he added.
Frankly, never ever did we imagine we’d have these kinds of discussions organized at the grass-root level and openly engage in conversation with TB advocates, experts and former patients. One of our objectives was to fill the knowledge gap about well-being & disease that selectively stays with medical professionals. Also information such as social stigma and burden of a TB patient –why/how it affects, do not often reach medical professionals here.
We also preferred to experiment with communication tools in an effort to more meaningfully ‘connect’ people/org. We wanted to use these tools to see how we can integrate people from various parts of the world into one single physical platform and genuinely learn from authentic experiences. There were also less technical glitches despite individuals joining us live from countries with electricity and connectivity issues. This was one big risky experiment and we could not have done it without the magnificent support we received from Int’l speakers and our local venue partner International Medical Center.
Funding events in my city is no big deal yet we had funding issues; no pharmaceutical companies would fund this event; sponsors felt hesitant with our content. But we also manage to conduct the event, surprisingly, in a very cost-effective manner and managed to keep the event attendance free as well.
Due to sheer stigma and fear, we also changed the name of the event multiple times and ended up writing ‘infectious disease (TB)’ instead of ‘Tuberculosis’. Our posters were removed from certain places simply because it was about Tuberculosis. We had individuals asking if there’s any active TB patient attending which seemed absurd as our communication materials were exceedingly clear. We had a mother preventing a daughter from attending since she does not want her daughter to attend an event on ‘tuberculosis’. The name of the disease is feared to the core in some communities. It was significant for us to explore ‘gender reactions’ emerging aftermath the event - given there’s dearth of understanding about gender health experiences in various communities - we felt it was absolutely fundamental for men in medical and non-medical community to actively learn about women’s experiences of TB. Therefore, the idea to hold this event as ‘women-only ’was dismissed.
The most active audience participation came from women as they seized the opportunity to ask questions comfortably and unreservedly. We had men moved by Linda and Jarvis’s story and men shedding tears while watching and listening to the ‘Photos of Life’ (tasweer-e-zindegi) project in Arabic.
“I have never heard tuberculosis patients’ stories before and incorporating patient’s perspective and experiences could be the single most important aspect in improving our healthcare system” said Dr. Shehata, a university lecturer at a government hospital and male doctor who treated my sis’s tuberculosis.
Our moderator, an experienced broadcaster in the UK, excitedly told us how much he has learned from the gender narrative session. "I was trying to get my head around why women face the stigma – it was insightful’said Mubashir Malic who arrived on the day solely to host our event and graciously explained to the audience ' It’s very important to know what a women goes through, when I get married and if my wife develop tuberculosis and I do not know how to deal with it – these stories narrated my women themselves will help me and other men understand what expreinces and emotions women go thorugh with Tuberculosis...I am not a medical professional, I come from an economics background - frankly, I did not know much about TB and I am here to learn.“
"Fighting Tuberculosis requires prioritizing TB voices”
Discourse involving tuberculosis needs to be mainstreamed, as much as it needs to step out from mainstream perspectives. We should realize the benefit we can derive by listening to many voices, ordinary and professional, including ‘alternative’ visionaries.
Politicians and governments around the world must acknowledge tuberculosis is still a problem. “When we sit on a plane, business class or otherwise, we are at risk. says J. Spicer, senior strategist (STOP Tuberculosis). ‘TB anywhere.. is TB everywhere. Therefore, we must help countries hardest hit strengthen their TB response first - that is the best way to protect our own citizens domestically.”
Only last week, there’s been a positive outcome on trial drugs proving to be ‘far more effective’ and could imply ‘shorter drug regimen’ for TB patients. Complete adherence to regular drug intake is vital under current TB treatment; miss few doses, you may end up getting the deadlier version. And It’s never easy to intake numerous drugs for months and years – family and friends, health workers and community support is critical. As my sister rightly said “It is not enough for a TB patient to fully regain a healthy state of being only with help of anti-TB drugs – there’s a tendency to ignore the social, economic and mental instability a patient has to endure.”
We could hear a unique complex of fortitude and humility ringing across the Tuberculosis voices which is often overshadowed by dismal, dark and agonizing stories in the mainstream.
“Stay positive! Don’t worry about what other people are saying’ says Rhea L. (Journalist, former TB patient.) ‘The disease is going to make you stronger and braver; you would come out as a much better person.” Linda Kelly also had a positive message “Jarvis learned a lot from this and raised awareness. It’s been an over a year now and he’s back playing football.”
Jarvis Kelly (13) had a message to children in Saudi Arabia with TB – “You will not die of Tuberculosis..You can get cured”.
Sana Sajun (IRD) also mentioned the themes highlighted in the photo-voice project included ‘difficulties’ faced by TB patients but also the support received from welfare org, support from friends, family and most talked about the ‘happiness in getting better’. It’s exciting to see recent developments in battling tuberculosis in various countries genuinely undertaking a more patient-centered and community engaged approach.
The fight against Tuberculosis has conventionally been - unashamedly – paternalistic which perhaps led to an over-medicalized approach in tackling the disease and failed to curb the stigma associated. As someone with a family member directly affected by TB, I call on for a far more concerted, collaborative and compassionate approach to globally eradicate Tuberculosis altogether. Major healthcare issues perhaps cannot be solved through ‘healthcare policies’ only. It’s important we see diseases as beyond just a public health issue - holistically explore, manage and identify the interdependencies of diseases, economics, urban planning, ecosystem, well-being and sustainable resource management.
There’s no ‘us’ or ‘them’ – it’s just ‘us’ and the support for concrete and collective action required to reduce spread or eliminate diseases can only be harnessed when we strive to incorporate and comprehend diverse perspectives and experiences in global health discourses.
"Photos of life" (audio+arabic+english subtitle) http://bit.ly/MeDVnZ ( all recorded clips will be available shortly on this channel)