"The Union World Conference is absolutely central to how evidence around TB and lung health is disseminated.” Stacie C. Stender, Chair, CCSA

In May, The Union’s Coordinating Committee of Scientific Activities (CCSA) gathered in Guadalajara, Mexico, to debate and craft the scientific programme for the forthcoming 48th Union World Conference on Lung Health. 

This behind-the-scenes meeting brought together the diverse experience of The Union’s Sections and Sub-Sections that, as well as developing the programme, spent several days reviewing the scientific endorsements to be made by The Union and a number of the awards to be presented during the conference itself. 

At the centre of this activity, was Stacie C. Stender, current Chair of the CCSA, a position that she has held for almost three years.  For Stacie, the meeting represents the pivotal moment that determines the scientific credibility of the Union World Conference: 

“It is incumbent on the CCSA to uphold the scientific and technical rigour and membership-based priorities of The Union World Conference. The best programme is a balance of policy, implementation and science. Working with this incredible group of people on the CCSA – all volunteers – to ensure that happens, is a tremendous task and one of the highlights of my work at The Union.”

Stacie, a Family Nurse Practitioner specialising in tuberculosis (TB) and HIV, was introduced to the work of The Union after attending the 2007 World Conference in Cape Town – where she lives. “I had never heard of The Union before, but became involved with the Nurses and Allied Professionals Sub-Section after attending their meeting during that conference. I have been intimately involved in improving the scope and status of the nursing profession across sub-Saharan Africa – here was a group of people doing just that across the world.” 

For Stacie, The Union’s remit also reflected her career working on the frontline of public health in underserved communities across Africa and the United States, “I have worked in TB and HIV my entire professional career, from the time I was a Peace Corps volunteer in Guinea over 20 years ago.  I have always been interested in infectious diseases.  But lung health has both professional and personal resonance and has affected my life on many levels.” 

When working in the Eastern Cape of South Africa in the early 2000s, Stacie became more involved in TB prevention and treatment. “I remember particularly a TB ward at one of the hospitals – there was only one Professional Nurse employed to care for more than 40 in-patients, a handful of Enrolled Nurses and Enrolled Nursing Assistants, and no medical personnel except to do rounds once or twice a week. It was dire.” 

Stacie points to the continuing failure of healthcare provision contributing to one of the greatest challenges in combatting TB and its multidrug-resistant versions. “The experience reflected the many obstacles routinely faced by low and middle income countries (LMICS) in developing functioning health systems.”

And for Stacie, lung disease has hit closer to home too.  “In 2004, a close friend and mentor died of lung cancer just 10 weeks after receiving the diagnosis. She thought she was having a myocardial infarction* at the age of 57. In truth, her acute onset chest pain was due to Superior Vena Cava Syndrome (a malignant obstruction within the thorax).” 

“My grandmother died of chronic obstructive pulmonary disease (COPD) at just 54 years old. I never knew her; it was before I was born. Then my mother suffered from COPD for a very long time. She was oxygen-dependent for the last 10 years of her life.” 

Stacie believes The Union has a unique role to play in future inroads into lung disease. “The Union must lead global initiatives to ensure TB and other lung health issues are appropriately addressed, from the funding of new diagnostics and treatments to effective programming for impact.  Prevention, affordable interventions, and improved quality of life, particularly for people living in LMICS, is key.”

That TB still suffers from misunderstanding and belief that it is a historical disease, remains a significant issue.  Stacie says, “It is high time that TB finally received due recognition and prominence – next year’s very first United Nations General Assembly High Level meeting is surely significant for that reason.” 

She sees the Union’s World Conference as also being integral to awareness building, as well as providing a recognised platform to present new research and development.

She says, “The conference is how I came to know The Union and the history driving it, and it continues to be absolutely central to how evidence around TB and lung health is disseminated. Bringing like-minded researchers and implementers together to share best practice and learn from one another is critical.” 

She adds, “The conference is never static and always developing – and must continue to do so to stay relevant. In Cape Town in 2015, we ensured affected communities and civil society had a voice through the development of our very first open community space. ‘Imbizo’ (meaning ‘gathering’ or ‘meeting’) was a step towards embracing public – as well as professional - opinion and recognising that all voices speaking out on lung disease should have a forum in which to do so.” 

Stacie’s role as Chair of the CCSA is a voluntary position. It is virtually impossible to appreciate how she finds time to fit it around her work as Snr Technical Advisor HIV/TB/Infectious Diseases at Jhpiego, an international non-profit health care organisation, committed to strengthening health care systems and improving the delivery of care around the world. She is also an Associate at Johns Hopkins University Bloomberg School of Public Health. 

“I want to acknowledge the support I have had from Jhpiego. I am privileged to work with so many inspiring people.  It never fails to amaze me how committed and willing people are to spend time on issues that are important to them.” 

At The Union World Conference in Guadalajara in October, Stacie will step down as Chair, but will remain on the CCSA as Past Chair. “To my successor, I want to say, let’s keep the momentum as a membership-based organisation going. Members are The Union’s backbone – let’s recognise that and ensure their contribution is recognised and informs The Union’s work and future direction. If that is my legacy, then I will be very proud indeed.” 

Read more about the CCSA 

 

*myocardial infarction also known as a heart attack

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