2015 Stakeholders Association Meeting
TB Alliance held its annual Stakeholders Association meeting in Cape Town, South Africa on December 1, 2015, ahead of the 46th Union World Conference on Lung Health. This year, more than 130 key stakeholders attended the meeting to hear updates from TB Alliance, partners and stakeholders and to discuss exciting progress as well as challenges in the development and delivery of impactful TB drug regimens.
There was particular focus and extensive discussion surrounding the introduction of improved, appropriately dosed childhood medicines as well as the advancement of a novel regimen being tested for extensively drug-resistant TB (XDR-TB).
Stakeholders Association President Karl Hofmann, of PSI, led the meeting. He opened the event by addressing the complexity of achieving "zero TB deaths in our lifetime as well as the importance of the TB pandemic not only as a health, but also as a human rights concern. The fact that the SHA meeting was held on World AIDS Day, he noted, illustrated the need for these two diseases to be tackled together.
Mario Raviglione, Director of the Global TB Programme at the World Health Organization, gave a keynote address highlighting the Role of Research in the End TB Strategy. Despite the progress made in TB control over the past 15 years, Dr. Raviglione reminds us how far we still have to go to “End TB” and what will be required from the research community to enable the achievements of the new Sustainable Development Goals. With currently available funding, he says, it would take nearly 200 years to end the TB epidemic. This must be tackled at the country-level, with the support of the global community.
View the slides from Mario's presentation
Dr. Mel Spigelman, President and CEO, discussed the state of TB Alliance, highlighting progress over the past year toward the organization’s vision of a “universal treatment.” He shared exciting advances within the TB Alliance portfolio. This included progress in the field of discovery, the completion of enrollment for the Phase 2b trial testing the BPaMZ regimen, and the launch of Nix-TB, among the first clinical trials to test a regimen for XDR-TB. In Nix-TB, the first few participants have now completed the treatment phase and have returned home. Dr. Spigelman also discussed that the introduction of improved pediatric fixed dose combinations, funded primarily by UNITAID, which are the organization’s first products to reach the market and are now available and affordable. Despite the progress, TB Alliance faces a number of challenges, including from the STAND trial, which has been placed on partial clinical hold. Dr. Spigelman reinforced the TB Alliance’s commitment to working with stakeholders through all of the organizations successes and challenges, and thanked the group for its commitment and support.
Willo Brock, Senior Vice President of External Affairs, focused on the topic of partnership, sharing how TB Alliance leverages its vast network around the world. Still, more partners are needed. Over the past year, TB Alliance surveyed stakeholders to better understand the perception of the organization and he shared key outcomes of the survey with the group. Mr. Brock also highlighted several new and expanded partnerships in 2015 with the governments of Australia and the Netherlands, pharma partners like Lilly and Abbott, research institutions, community stakeholders, manufacturers and delivery agencies.
View the slides from Mel and Willo's presentation
Dr. Francesca Conradie, a Principal Investigator for the Nix-TB Trial at Sizwe Hospital in Johannesburg, South Africa, shared her perspective about what it’s like as an investigator to test a potential new TB treatment for those who have had no other options. By way of background, Dr. Conradie provided a history of the XDR-TB epidemic and gave a snapshot of the current burden in South Africa, explaining the grim prognosis for such patients. For years, she shared, her experience of treating people with XDR-TB has been difficult. However, in the face of such high mortality, the regimen being tested, she noted, offers hope. She spoke about a patient who had battled XDR for more than two years with no sputum conversion. However, on the Nix-TB trial, the person has now completed a full course of treatment, has sputum converted and has left the hospital for the first time in two years. This patient was crying, singing and dancing in the courtyard of the hospital and staff thought she was having a psychotic event. In reality, she was celebrating her first glimpse of hope at a life she thought she would not be able to have. Dr. Conradie’s account of this patient’s experience and of her own experience as a researcher working to test new treatments was very moving to the whole audience.
View the slides from Francesca's presentation
Dr. Andreas Diacon, CEO and Chief Investigator at TASK Applied Science, provided his perspective from the field on the need for an increased pipeline of new TB drugs. He highlighted just how far the field has come — from the days of sanitariums in the rural hillsides of Switzerland depicted in history books to today, when we are testing potentially transformative novel regimens. Dr. Diacon expressed the need for more innovation by describing what a “Magic Bullet” for TB would look like — three drugs from new classes, with no resistance that can be used to treat all forms of TB.
View the slides from Andreas' presentation
One of the most exciting announcements made at the Union conference was the world’s first availability of appropriate, child-friendly TB medicines in correct doses. For TB Alliance and its partners including WHO, UNITAID, and USAID, this was a key marker of progress. This announcement of availability provided the context to begin a forward-looking discussion at the Stakeholders Association meeting on future priorities for treating children with TB. Cherise Scott, Head of the Pediatric Initiative at TB Alliance, moderated a Childhood TB Panel which focused on gaining input on priorities for the next 36 months that will be the most impactful for improving treatment for children with TB. The panel of experts included Dr. Anna Mandalakas, Dr. Jennifer Furin, Dr. Anneke Hesseling and Dr. Stephen Graham.
Dr. Mandalakas, Baylor College of Medicine, prioritized the need for a broader childhood TB education campaign. Such a campaign, she said, should raise awareness about childhood TB, reach peripheral and non-traditional TB providers to improve diagnostic and treatment skills and practices, introduce the new fixed dose combinations and advocate for their inclusion in national policy. She also prioritized the need for continued development of child-friendly formulations of isoniazid, pediatric second-line treatment and promotion of contact tracing.
Dr. Furin, Case Western Reserve University, focused her talk on the need for a more inclusive, family-centered approach to TB—one that does not separate parents from children in the way and where they are diagnosed and treated. Drawing on models from other diseases, she suggested the implementation of family clinics that provide comprehensive care to communities. Dr. Furin also highlighted the need to more effectively reintroduce TB affected children back into the community following treatment by reducing isolation and stigma and making more flexible drug administration policies. Avoiding the pitfalls of cost-driven approaches to childhood TB was another priority discussed by Dr. Furin and a place where, she said, creative incentive structures are needed for companies, researchers, and programs. In so doing, the field ensures that children are not forgotten or left out of public health approaches.
Dr. Hesseling, Desmond Tutu Research Centre, highlighted the need to include more children in TB drug research, citing the little data available on drugs that are even already registered. In addition to a number of other topics, Dr. Hesseling suggested moving away from the idea of developing “pediatric formulations” and focus more on “patient friendly formulations” that are useful in treating all patients with TB.
Dr. Graham, University of Melbourne, summarized how market sizing efforts have resulted in better, more accurate, though larger estimates of the childhood TB burden. He noted that the possibility of new FDCs have likely created enthusiasm among providers and National Treatment Programs, and the same effort needs to be now directed to diagnostics. Dr. Graham suggested that child healthcare needs to be better linked to TB programs, that there needs to be more attention on preventive therapy and the importance of shorter combination treatments, improved contact tracing and preventive therapy can have on the childhood TB epidemic.
View the slides from these presentations
Please direct any inquiries about the event to SHA@tballiance.org