‘I didn’t plan to be an activist’ : perspectives on tuberculosis care from six survivors

Six survivors from diverse backgrounds describe how tuberculosis wreaked havoc on their lives and drove them to advocate at a local and global level to improve care and end the suffering caused by the disease.

Each year, 10 million people worldwide fall sick due to tuberculosis (TB) and 1.6 million people die, making it the leading cause of death from a single infectious agent. TB care remains reliant on outdated diagnostic tools such as sputum smear microscopy and old, toxic drugs that can cause irreversible and devastating side effects, such as hearing loss. Is it any wonder that treatment outcomes are poor, particularly for drug-resistant (DR) TB? Until recently, the voice of TB survivors has been conspicuously absent from high-level policy discussions or conferences on TB. As six survivors of TB, we hope sharing our individual experiences in the context of the main steps within the TB cascade of care can highlight the shortcomings of the current system and provide suggestions of ways to improve patient care at each step.

Diagnosis- Saurabh Rane
I was a physiotherapy student in India when I developed fever, loss of appetite and weight loss. After several consultations, an x-ray and minor surgery, I was diagnosed with pulmonary TB. However, I did not improve despite several months of taking the medications that I was prescribed. After several more months, I was eventually diagnosed with extensively drug-resistant (XDR) TB, by which time I had suffered significant damage to both lungs. Access to rapid, accurate TB diagnostic testing that enables an assessment of drug resistance, such as Xpert MTB/RIF or Ultra, is essential but is still not available to the majority of patients with TB symptoms as an initial test when they seek evaluation. A rapid screening or triage test, with sensitivity and ease of use akin to a pregnancy test, could enable high throughput evaluation of patients at earlier levels of the healthcare system such as community health posts or primary healthcare centers. Recent advances in genetic sequencing could enable high quality drug susceptibility testing that could guide individualized treatment regimens. However, to maximize impact, it will be essential to ensure equity of access to these advances for TB affected communities in high burden settings.

Treatment initiation- Paulina Siniatkina
I am an artist who spent 6 months and 17 days in a TB clinic in Moscow in 2015. When first diagnosed, I did not know much about TB and was quickly shocked to learn of the stigma surrounding this treatable infection. My doctor advised me not to tell anyone that I had TB, otherwise I would be branded for life. I was struck that ignorance drives fear which drives stigma, and saw first-hand how emotionally damaging this could be. I am a staunch advocate for training that would teach clinicians how to communicate issues around TB diagnosis and treatment more sensitively and effectively to patients. Despite the push to move to decentralized care in many high TB burden settings, many countries, particularly within Eastern Europe, still utilize prolonged hospitalizations for both DR-TB and drug-sensitive TB, even though this outdated practice can increase transmission, in addition to further stigma and suffering.

Treatment support- Nandita Venkatesan and Phumeza Tisile
I (Nandita) am a journalist and Indian classical dancer who woke up with sudden hearing loss in 2013, caused by an injectable aminoglycoside drug that was being used as part of a regimen to treat my second bout of abdominal TB. I not only learnt first-hand about the stigma associated with TB as a woman of reproductive age in India but also of the stigma that is associated with a disability such as hearing loss. While battling depression that occurred as a result, I found a way to return to classical Indian dance, memorizing beats and using floor vibrations to sync her movements with those of other dancers. My loneliness during TB treatment prompted me to offer support to other people with TB who often reach out to me. I am passionate about ensuring that TB care services link with mental health services in order to address the impact of TB diagnosis and treatment.

I (Phumeza) also developed hearing loss due to the use of injectable kanamycin during DR-TB treatment. I was fortunate to receive a cochlear implant and am pursuing a course in gender studies as a student at University of Cape Town. I am part of the management committee for advocacy organization, TB Proof, and work with MSF to advocate on patent laws to expand access to new TB drugs. We have now combined forces to use Indian patent law to challenge pharmaceutical giant Johnson and Johnson to ensure that TB patients have access to the life-saving drug, bedaquiline, that does not involve patients choosing between deafness versus death.

Engaging TB champions- Endalkachew Fekadu and Ingrid Schoeman
I (Endalkachew) am a pharmacist who was diagnosed with multidrug-resistant (MDR) TB in Ethiopia in 2007, at a time when there was no system in place to treat DR-TB, meaning that I was reliant on donated drugs from a non-governmental organization (NGO) based in the United States. I now lead my own NGO, Volunteer Health Services, which provides continued professional treatment support for TB patients, promoting patient-owned care.

I (Ingrid) am a dietician who contracted occupational XDR TB while working in South Africa. I use the power of my personal story to advocate at high level meetings for the inclusion of people affected by TB in the global TB response. I am operational manager at TB Proof and am passionate about developing community health worker TB champions who can improve the quality of TB care.

All of the TB survivors featured in this blog are involved in advocacy groups (Global Coalition of TB Activists, Touched by TB, TB People and TB Proof) that highlight there is life after TB and help to promote resilience (see feature image) among TB affected people, while advocating for the necessary awareness and resources to end this devastating epidemic.

‘Nothing for us, without us!’
TB survivors remain a valuable yet heavily underutilized resource for national TB programs. None of the TB survivors in this blog expected that we would need to become TB activists, but we quickly realized that millions of others like us could benefit from improved support throughout the cascade of care. Policy makers, researchers and implementers must listen to affected communities to understand their needs and priorities and provide the necessary political, economic and development support that is necessary if we are to #EndTB in our lifetimes.

Feature image: Life after TB.
The TB survivors (clockwise from top left corner) featured in this blog demonstrate resilience through high altitude trekking (Saurabh Rane), advocating to change patent laws (Phumeza Tisile), art (Paulina Siniatkina), dance and advocacy, pictured at the recent UN high level meeting on TB (Nandita Venkatesan), advocating to decrease TB related stigma and develop TB champions (Ingrid Schoeman) and leading an NGO that provides treatment support for TB patients inspired by his experience (Endalkachew Fekadu).