21 Mar

New collection of stories published: “We Can Heal”

We Can Heal ThumbnailOn March 21, 2013, the Sentinel Project on Pediatric Drug-Resistant Tuberculosis and Treatment Action Group (TAG) published We Can Heal, a collection of stories of 30 children in 30 countries affected by this disease. The stories call for urgent attention to this global threat to children, and are a testament to the need for improved programs, policies, and tools. The global community must commit long overdue political will and resources to address the gaps identified in this collection and to tackle all forms of TB in children necessary to achieve zero TB deaths, new infections, and suffering.  

20 Mar

We Can Heal | Prevention, diagnosis, treatment, care and support: Addressing drug-resistant tuberculosis in children

This collection of 30 stories from 30 countries identifies what the TB community needs to achieve zero TB deaths, new infections, and suffering—a target recently called for by more than
500 individuals and organizations. Addressing the gaps in prevention, diagnosis, treatment, care, and support that this report outlines will bring us closer to realizing zero child deaths from
drug-resistant tuberculosis (DR-TB), a preventable and curable disease.

View a PDF version of the document here: “We Can Heal | Prevention, Diagnosis, Treatment, Care and Support: Addressing Drug-Resistant Tuberculosis in Children” (March, 2013)

04 Dec

Request for submissions: Child DR-TB stories

PDF Cover Pic

The stories submission page for Phase II of the Sentinel Project on Pediatric Drug-Resistant Tuberculosis is now live! Check it out here.

As the January 24th deadline approaches, we are still working to collect stories from as many countries as possible to highlight in our next report, which will be launched on World TB Day, March 2013.  Please help us identify stories of children with DR-TB to highlight in our report.  It can be a child who died with or without treatment, or a good outcome — we are gathering both.

Alternatively, if you do not personally know of any cases, but know of a colleague who might, please pass this request along and refer them to the new “submissions page” of the Sentinel Project website.  There are links available on the submissions page where they can download the story collection framework document in English (attached), French, Spanish and Russian — this framework includes a consent form and details the type of information we are looking to include in the stories we collect.

We look forward to working together to advocate for better drugs and drug formulations, diagnostics, and access to care for children with DR-TB!

Stories and/or completed frameworks can be sent to sentinel_project@hms.harvard.edu and questions directed to Lindsay McKenna at Lindsay.McKenna@treatmentactiongroup.org.

14 Nov

Workshop 06: Preventing child deaths from drug resistant tuberculosis

Wednesday, 14 November 2012, 9:00 – 12:30, Room: 409

43rd Union World Conference on Lung Health, 13-17 November 2012, Kuala Lumpur, Malaysia

Workshop sponsored by Médecins Sans Frontières

Description

Children with drug resistant tuberculosis (DR-TB) are a population who have been largely overlooked by TB programmes as well as by international policy makers and researchers. There is an urgent need to address this gap. This workshop aims to provide participants with an update on recent initiatives targeting DR-TB in children, as well as demonstrating practical approaches to overcome current challenges in diagnosis and treatment. Furthermore, this workshop will review the research agenda, including studies that are planned or on-going, define what the urgent needs are and discuss how participants can become actively involved.

Presentations

1. An introduction to the Sentinel Project on Paediatric Drug Resistant Tuberculosis

Mercedes Becerra (USA)

2. Research meeting the needs of children with DR-TB: an update on progress

Soumya Swaminathan (India)

3. Introducing DR-TB diagnosis and treatment for children into TB programmes: a case study from Tajikistan

Bern-Thomas Nyang’wa (UK)

4. The use of practical tools and approaches to the diagnosis and treatment of children with DR-TB

James Seddon (UK)

5. Children in the evolving TB epidemic: future perspectives and priorities

Ben Marais (Australia)

Coordinators: Grania Brigden (UK), Mercedes Becerra (USA)

Chair: Stephen M. Graham (Australia)

20 Mar

Being brave: Stories of children with drug-resistant tuberculosis

When it comes to drug-resistant tuberculosis (DRTB), the global community is failing to “get it right.” Millions of people around the world suffer from this dangerous, yet treatable, infectious disease. Yet, in over a decade, less than 1% of those with DR-TB have been diagnosed and treated.* Children bear a disproportionate burden of this disease, and are far less likely than adults with DR-TB to have access to appropriate care.

This collection of stories gives voice to the children from around the world featured in it, and to the thousands more like them who face the challenges of fighting DR-TB every day. It is also a global call to action. These stories invite all of us to join children with DRTB and their families and caregivers in the struggle for better diagnosis and treatment. It is the first step toward “getting it right” for children with TB.

“Being Brave: Stories of Children with Drug-Resistant Tuberculosis” (March, 2012)

09 Mar

In memory of Dr. Tengiz Gvasalia

Dr. Tengiz Gvasalia, head of pediatric TB programs in the country of Georgia, died on February 13, 2012 at the age of 65. Dr. Gvasalia was a compassionate pediatric TB provider who saved the lives of hundreds of children with TB in Georgia. In addition, he was the first physician to treat children with drug-resistant TB in the country. He was an exemplary doctor, skilled leader, and a masterful teacher. Perhaps most importantly, Dr. Gvasalia was a fierce advocate for children with TB.

Dr. Gvasalia was much beloved by those he cared for and it was common to see him surrounded by his young patients and their families outside of the children’s TB hospital in Tbilisi. His warmth was felt by all who encountered him. In addition to providing high quality medical care, Dr. Gvasalia recognized the horrible social conditions faced by many of his patients and their families. He went out of his way to make sure their needs were met–including providing food, housing, clothes, and toys for the families under his care. An avid artist, he taught the children and families in his care to use art as part of their healing. “Without him here,” noted a colleague, “the place is not the same. We have lost our heart.”

Dr. Gvasalia was memorialized at a service on Friday, February 17th held at the National Center for TB and Lung Disease in Tbilisi. A memorial fund has been established in his name to continue to meet the social needs of his patients and their families. In this way, Dr. Gvasalia will continue to provide comfort and health to the smallest victims of TB. For inquiries or to make a donation, please contact Dr. Jennifer Furin (jjf38@case.edu).