Signatories to date
My patient’s choice – the Jolene Samuels MDR-TB Pledge
A carer’s pledge to offer patients an informed choice between a novel drug or an injectable drug for the treatment of MDR-TB
~ In loving memory of nurse Jolene Samuels (https://vimeo.com/103717862), MDR-TB Champion & Cochlear Implant recipient ~
I, the undersigned, am involved in the direct and/or indirect care of people with MDR-TB (multidrug-resistant tuberculosis). I hereby pledge to empower the people I care for to choose between the use of a novel drug (currently bedaquiline or delamanid) or an injectable aminoglycoside drug as part of their MDR-TB regimen, based on all relevant information about known benefits and risks shared with them.
I acknowledge that there are current data limitations, but in my opinion there is enough information to reasonably assume that MDR-TB regimens with a novel drug are at least equally effective compared to the old MDR-TB regimen containing an injectable during the intensive phase of treatment. Based on all available information, as summarised in a recent review by Reuter et al, both current novel drugs likely result in fewer serious adverse events than the injectables, particularly debilitating irreversible ones such as hearing loss, which may occur in as many as half of people treated with injectables for MDR-TB. I am also aware that an individual patient data meta-analysis of 9153 patients from 32 observational studies with MDR-TB in 2012 by Ahuja et al found no association between the use of any injectable agent and the probability of treatment success. Furthermore, in the new shorter MDR-TB treatment course of nine months the injectable agent has been replaced by bedaquiline for all pregnant patients in the Western Cape Province of South Africa, and injectable-free regimens have been recommended by the WHO for some children who are living with MDR-TB.
There are a number of clinical trials currently being done to formally assess the efficacy and safety of injectable free regimens, but the results of these studies are likely to take several years to become available. Given the limited evidence to support the efficacy of injectable agents and the clearly documented safety risks they pose, I believe that persons living with MDR-TB should be offered treatment options that would allow them to avoid the use of injectable agents in their treatment plan, while simultaneously according them the right to enjoy the benefits of scientific progress. (London et al, 2016)
I therefore commit to giving every person diagnosed with MDR-TB under my care the opportunity to choose whether they would prefer to be treated with an MDR-TB regimen that contains a novel agent (either bedaquiline or delamanid) or one that contains an injectable agent. In settings where novel drugs are not yet available, I will ensure my patients can take part in shared decision making about their care and I will support their calls for access to safer and more effective alternatives.
Anybody involved in the direct or indirect care of people with TB is most welcome to sign on, in person or via the web link: http://www.tbproof.org/pledge
After signing, please consider circulating the link via email and/or social media, using the hashtag: #MyPatientsChoice
For more information or if you would like to get more involved, please email ingrid.tbproof@gmail.com
My patient’s choice pledge – signatories to date (21 March 2018):
Organisations:
- ACTION global health advocacy partnership
- Advocates for Health and Development Initiative
- DR-TB STAT
- Grassroots Development and Empowerment Foundation
- Management Sciences for Health
- Mongolian TB Coalition
- REDTBLAC
- RESULTS International Australia
- Sentinel Project on Pediatric Drug-Resistant TB
- Socios en Salud Sucursal Peru
- TB HIV Care
- TB Proof
- Treatment Action Group
Individuals and designation/s:
- Sir Alimuddin Zumla – Academic/technical expert/research field
- Abeda Williams – Other care provider
- Adelaide Kekana – Healthcare worker
- Aleche Barnard – Healthcare worker
- Amber Kelly – Academic/technical expert/research field
- Ana Millones – Healthcare worker
- Ananja van der Westhuizen – Civil Society/Advocacy
- André Van Zyl – Academic/technical expert/research field
- Andrea von Delft – Healthcare worker, Person affected by TB, Civil Society/Advocacy
- Andrew Rosser – Healthcare worker
- Angela Dramowski – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
- Arne von Delft – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
- Ashton Joseph – Healthcare worker
- Aurelie Nelson – Healthcare worker
- Barbara Seaworth
- Bart Willems – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
- Beatrijs Stikkers – Civil Society/Advocacy
- Bonnie Snyders – Healthcare worker
- Cady Adams – Healthcare worker
- Carly Rodriguez – Academic/technical expert/research field
- Carolina Moran – Civil Society/Advocacy, Academic/technical expert/research field
- Caroline Nilsson – Healthcare worker
- Charletie Plaatjies – Healthcare worker
- Chenise Naicker – Healthcare worker
- Claude Rutanga – Academic/technical expert/research field
- Colette Gunst – Healthcare worker
- Colleen Daniels – Policy maker/management
- Dadu Adrei
- Daisy Dharmaraj – Healthcare worker
- Dalene von Delft – Healthcare worker, Person affected by TB, Civil Society/Advocacy,
- Daniela Puma Abarca
- Delene Martin – Person affected by TB
- Dirk von Delft – Healthcare worker
- Dorothy Namutamba – Civil Society/Advocacy
- Edwardo Patac – Person affected by TB
- Elana Stander – Healthcare worker, Person affected by TB
- Emma Van Breda – Healthcare worker
- Ena Madsen – Policy maker/management
- Erika Mohr – Academic/technical expert/research field
- Esther Sonamzi – Civil Society/Advocacy
- Eveline Klinkenberg – Academic/technical expert/research field
- Faieka Samsodien – Healthcare worker
- Fanny Garcia – Healthcare worker
- Faudia Forster – Civil Society/Advocacy
- Fraser Wares – Healthcare worker
- Glenda Wright – Healthcare worker
- Grania Brigden – Healthcare worker
- Haydee Rumaldo – Healthcare worker
- Heena Narotam – Healthcare worker
- Helene-Mari van der Westhuizen – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
- Ingrid Schoeman – Healthcare worker, Person affected by TB, Civil Society/Advocacy
- James Seddon – Healthcare worker, Academic/technical expert/research field
- Janet De Staalo – Healthcare worker
- Javier Pablo Anamaria Cardenas
- Jeanette Lochner – Person affected by TB
- Joyce Sauk – Healthcare worker
- Judy Caldwell – Healthcare worker
- Jurgens Peters – Healthcare worker, Academic/technical expert/research field
- Juwaya Morta – Healthcare worker
- Kagiso Norman Matiting – Person affected by TB, Civil Society/Advocacy
- Karen Edith Ramos Carhuas – Healthcare worker
- Karin Huyssen – Healthcare worker
- Khanyisile Chiganze – Academic/technical expert/research field
- Kolawole Ekanoye – Other care provider, Civil Society/Advocacy
- Koot Kotze – Healthcare worker, Civil Society/Advocacy
- Kristal Duncan – Academic/technical expert/research field
- Lenny Naidoo – Healthcare worker, Policy maker/management, Civil Society/Advocacy
- Lerato Kekana – Healthcare worker
- Liana Horn – Healthcare worker
- Lisa George-Svahn – Healthcare worker
- Lourdes Cruzado – Healthcare worker, Civil Society/Advocacy
- Lucica Ditiu – Healthcare worker, Policy maker/management, Academic/technical expert/research field
- Lydia Lewis – Healthcare worker
- Lynn Gardner – Healthcare worker
- Mandy Slutsker – Civil Society/Advocacy
- Marcela Tommasi – Healthcare worker
- Margaret Matthews – Healthcare worker, Person affected by TB
- Margeory Alexandra Carnero Avendaño – Civil Society/Advocacy
- Maria Stuttaford
- Maria Elena Binlayan
- Maria Alice da Silva Telles
- Marianna Theron – Healthcare worker
- Marion Heap – Academic/technical expert/research field
- Maritsa Kotze – Healthcare worker
- Mary Miller – Healthcare worker, Civil Society/Advocacy
- Mary Thompson – Healthcare worker
- Mavis Sifube – Healthcare worker
- Mavo August – Healthcare worker
- Max Kapanda – Other care provider
- Max Meis – Healthcare worker
- Megan Sonnenberg – Policy maker/management
- Michelle Galloway – Civil Society/Advocacy
- Milagros Mendoza – Healthcare worker
- Miriam Arago Galindo – Healthcare worker
- Mo Barry – Academic/technical expert/research field
- Mogie Reddy – Academic/technical expert/research field
- Nandipa Mafongosi – Academic/technical expert/research field
- Naomi Wanjiru – Healthcare worker, Person affected by TB, Civil Society/Advocacy
- Nii Nortey Hanson-Nortey – Policy maker/management
- Nishant Chavan – Academic/technical expert/research field
- Noluvo Ngambu – Healthcare worker
- Nondwe Titi – Civil Society/Advocacy
- Nontle Plaatjie – Healthcare worker
- Norah Pezisa – Healthcare worker
- Nosi Kalawe – Healthcare worker, Policy maker/management, Civil Society/Advocacy
- Nthabeleng Jantjie – Healthcare worker
- Oxana Domenti – Policy maker/management
- Pam Britt
- Phumeza Tisile – Person affected by TB, Civil Society/Advocacy
- Pilar Ustero Alonso – Healthcare worker
- Quratulain Kizilbash – Healthcare worker
- Rabia Cariem – Healthcare worker
- Rafael Laniado-Laborín – Healthcare worker, Academic/technical expert/research field
- Raghavendra Patil – Healthcare worker
- Rahul Thakur – Academic/technical expert/research field
- Revathi Gunturu – Healthcare worker
- Robert Komane – Healthcare worker
- Rodd Gerstenhaber – Civil Society/Advocacy
- Romany Redman – Healthcare worker
- Ronald Armando Penaredondo – Person affected by TB, Civil Society/Advocacy
- Rosa Herrera – Healthcare worker
- Rosa Yataco – Healthcare worker
- Ruvandhi Nathavitharana – Healthcare worker, Civil Society/Advocacy, Academic/technical expert/research field
- Sara Perea – Healthcare worker, Academic/technical expert/research field
- Sebastian Schuetzenberger – Healthcare worker, Academic/technical expert/research field
- Shabirah Adriaanse – Healthcare worker
- Shrikant Peters – Healthcare worker
- Sindiswe Gweja – Healthcare worker
- Skye Crouch – Healthcare worker
- Soroaga Larisa – Healthcare worker, Academic/technical expert/research field
- Subrat Mohanty – Civil Society/Advocacy
- Susan Cookson – Healthcare worker
- Tali Cassidy – Academic/technical expert/research field
- Tania Dolby – Healthcare worker
- Teresa Wilson – Healthcare worker
- Thami Mthebe – Healthcare worker
- Thato Mosidi – Healthcare worker, Person affected by TB, Civil Society/Advocacy
- Tinashe Mutsvangwa – Academic/technical expert/research field
- Usiphe Mpambane – Other care provider
- Vanessa Carrillo Montenegro – Media
- Vindhya Vatsyayan – Academic/technical expert/research field
- Virginia Zweigenthal – Academic/technical expert/research field
- Warick Van Der Lingen – Healthcare worker
- Waru Gichane – Academic/technical expert/research field
- Wieda Human – Healthcare worker, Civil Society/Advocacy
- Wubshet Jote Tolossa – Healthcare worker, Person affected by TB, Civil Society/Advocacy
- Zahedul Islam – Policy maker/management
- Zara Trafford – Academic/technical expert/research field
- Ziyanda Damse – Healthcare worker
- Zolelwa Sifumba – Healthcare worker, Person affected by TB, Civil Society/Advocacy