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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 Furthermore, in the new shorter MDR-TB treatment course of nine months the injectable agent has been replaced by bedaquiline for all pregnant patients in the Western Cape Province of South Africa, and injectable-free regimens have been recommended by the WHO for some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:

  1. ACTION global health advocacy partnership
  2. Advocates for Health and Development Initiative
  3. DR-TB STAT
  4. Grassroots Development and Empowerment Foundation
  5. Management Sciences for Health
  6. Mongolian TB Coalition
  7. REDTBLAC
  8. RESULTS International Australia
  9. Sentinel Project on Pediatric Drug-Resistant TB
  10. Socios en Salud Sucursal Peru
  11. TB HIV Care
  12. TB Proof
  13. Treatment Action Group

 

Individuals and designation/s:

  1. Sir Alimuddin Zumla – Academic/technical expert/research field
  2. Abeda Williams – Other care provider
  3. Adelaide Kekana – Healthcare worker
  4. Aleche Barnard – Healthcare worker
  5. Amber Kelly – Academic/technical expert/research field
  6. Ana Millones – Healthcare worker
  7. Ananja van der Westhuizen – Civil Society/Advocacy
  8. André Van Zyl – Academic/technical expert/research field
  9. Andrea von Delft – Healthcare worker, Person affected by TB, Civil Society/Advocacy
  10. Andrew Rosser – Healthcare worker
  11. Angela Dramowski – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
  12. Arne von Delft – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
  13. Ashton Joseph – Healthcare worker
  14. Aurelie Nelson – Healthcare worker
  15. Barbara Seaworth
  16. Bart Willems – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
  17. Beatrijs Stikkers – Civil Society/Advocacy
  18. Bonnie Snyders – Healthcare worker
  19. Cady Adams – Healthcare worker
  20. Carly Rodriguez – Academic/technical expert/research field
  21. Carolina Moran – Civil Society/Advocacy, Academic/technical expert/research field
  22. Caroline Nilsson – Healthcare worker
  23. Charletie Plaatjies – Healthcare worker
  24. Chenise Naicker – Healthcare worker
  25. Claude Rutanga – Academic/technical expert/research field
  26. Colette Gunst – Healthcare worker
  27. Colleen Daniels – Policy maker/management
  28. Dadu Adrei
  29. Daisy Dharmaraj – Healthcare worker
  30. Dalene von Delft – Healthcare worker, Person affected by TB, Civil Society/Advocacy,
  31. Daniela Puma Abarca
  32. Delene Martin – Person affected by TB
  33. Dirk von Delft – Healthcare worker
  34. Dorothy Namutamba – Civil Society/Advocacy
  35. Edwardo Patac – Person affected by TB
  36. Elana Stander – Healthcare worker, Person affected by TB
  37. Emma Van Breda – Healthcare worker
  38. Ena Madsen – Policy maker/management
  39. Erika Mohr – Academic/technical expert/research field
  40. Esther Sonamzi – Civil Society/Advocacy
  41. Eveline Klinkenberg – Academic/technical expert/research field
  42. Faieka Samsodien – Healthcare worker
  43. Fanny Garcia – Healthcare worker
  44. Faudia Forster – Civil Society/Advocacy
  45. Fraser Wares – Healthcare worker
  46. Glenda Wright – Healthcare worker
  47. Grania Brigden – Healthcare worker
  48. Haydee Rumaldo – Healthcare worker
  49. Heena Narotam – Healthcare worker
  50. Helene-Mari van der Westhuizen – Healthcare worker, Person affected by TB, Civil Society/Advocacy, Academic/technical expert/research field
  51. Ingrid Schoeman – Healthcare worker, Person affected by TB, Civil Society/Advocacy
  52. James Seddon – Healthcare worker, Academic/technical expert/research field
  53. Janet De Staalo – Healthcare worker
  54. Javier Pablo Anamaria Cardenas
  55. Jeanette Lochner – Person affected by TB
  56. Joyce Sauk – Healthcare worker
  57. Judy Caldwell – Healthcare worker
  58. Jurgens Peters – Healthcare worker, Academic/technical expert/research field
  59. Juwaya Morta – Healthcare worker
  60. Kagiso Norman Matiting – Person affected by TB, Civil Society/Advocacy
  61. Karen Edith Ramos Carhuas – Healthcare worker
  62. Karin Huyssen – Healthcare worker
  63. Khanyisile Chiganze – Academic/technical expert/research field
  64. Kolawole Ekanoye – Other care provider, Civil Society/Advocacy
  65. Koot Kotze – Healthcare worker, Civil Society/Advocacy
  66. Kristal Duncan – Academic/technical expert/research field
  67. Lenny Naidoo – Healthcare worker, Policy maker/management, Civil Society/Advocacy
  68. Lerato Kekana – Healthcare worker
  69. Liana Horn – Healthcare worker
  70. Lisa George-Svahn – Healthcare worker
  71. Lourdes Cruzado – Healthcare worker, Civil Society/Advocacy
  72. Lucica Ditiu – Healthcare worker, Policy maker/management, Academic/technical expert/research field
  73. Lydia Lewis – Healthcare worker
  74. Lynn Gardner – Healthcare worker
  75. Mandy Slutsker – Civil Society/Advocacy
  76. Marcela Tommasi – Healthcare worker
  77. Margaret Matthews – Healthcare worker, Person affected by TB
  78. Margeory Alexandra Carnero Avendaño – Civil Society/Advocacy
  79. Maria Stuttaford
  80. Maria Elena Binlayan
  81. Maria Alice da Silva Telles
  82. Marianna Theron – Healthcare worker
  83. Marion Heap – Academic/technical expert/research field
  84. Maritsa Kotze – Healthcare worker
  85. Mary Miller – Healthcare worker, Civil Society/Advocacy
  86. Mary Thompson – Healthcare worker
  87. Mavis Sifube – Healthcare worker
  88. Mavo August – Healthcare worker
  89. Max Kapanda – Other care provider
  90. Max Meis – Healthcare worker
  91. Megan Sonnenberg – Policy maker/management
  92. Michelle Galloway – Civil Society/Advocacy
  93. Milagros Mendoza – Healthcare worker
  94. Miriam Arago Galindo – Healthcare worker
  95. Mo Barry – Academic/technical expert/research field
  96. Mogie Reddy – Academic/technical expert/research field
  97. Nandipa Mafongosi – Academic/technical expert/research field
  98. Naomi Wanjiru – Healthcare worker, Person affected by TB, Civil Society/Advocacy
  99. Nii Nortey Hanson-Nortey – Policy maker/management
  100. Nishant Chavan – Academic/technical expert/research field
  101. Noluvo Ngambu – Healthcare worker
  102. Nondwe Titi – Civil Society/Advocacy
  103. Nontle Plaatjie – Healthcare worker
  104. Norah Pezisa – Healthcare worker
  105. Nosi Kalawe – Healthcare worker, Policy maker/management, Civil Society/Advocacy
  106. Nthabeleng Jantjie – Healthcare worker
  107. Oxana Domenti – Policy maker/management
  108. Pam Britt
  109. Phumeza Tisile – Person affected by TB, Civil Society/Advocacy
  110. Pilar Ustero Alonso – Healthcare worker
  111. Quratulain Kizilbash – Healthcare worker
  112. Rabia Cariem – Healthcare worker
  113. Rafael Laniado-Laborín – Healthcare worker, Academic/technical expert/research field
  114. Raghavendra Patil – Healthcare worker
  115. Rahul Thakur – Academic/technical expert/research field
  116. Revathi Gunturu – Healthcare worker
  117. Robert Komane – Healthcare worker
  118. Rodd Gerstenhaber – Civil Society/Advocacy
  119. Romany Redman – Healthcare worker
  120. Ronald Armando Penaredondo – Person affected by TB, Civil Society/Advocacy
  121. Rosa Herrera – Healthcare worker
  122. Rosa Yataco – Healthcare worker
  123. Ruvandhi Nathavitharana – Healthcare worker, Civil Society/Advocacy, Academic/technical expert/research field
  124. Sara Perea – Healthcare worker, Academic/technical expert/research field
  125. Sebastian Schuetzenberger – Healthcare worker, Academic/technical expert/research field
  126. Shabirah Adriaanse – Healthcare worker
  127. Shrikant Peters – Healthcare worker
  128. Sindiswe Gweja – Healthcare worker
  129. Skye Crouch – Healthcare worker
  130. Soroaga Larisa – Healthcare worker, Academic/technical expert/research field
  131. Subrat Mohanty – Civil Society/Advocacy
  132. Susan Cookson – Healthcare worker
  133. Tali Cassidy – Academic/technical expert/research field
  134. Tania Dolby – Healthcare worker
  135. Teresa Wilson – Healthcare worker
  136. Thami Mthebe – Healthcare worker
  137. Thato Mosidi – Healthcare worker, Person affected by TB, Civil Society/Advocacy
  138. Tinashe Mutsvangwa – Academic/technical expert/research field
  139. Usiphe Mpambane – Other care provider
  140. Vanessa Carrillo Montenegro – Media
  141. Vindhya Vatsyayan – Academic/technical expert/research field
  142. Virginia Zweigenthal – Academic/technical expert/research field
  143. Warick Van Der Lingen – Healthcare worker
  144. Waru Gichane – Academic/technical expert/research field
  145. Wieda Human – Healthcare worker, Civil Society/Advocacy
  146. Wubshet Jote Tolossa – Healthcare worker, Person affected by TB, Civil Society/Advocacy
  147. Zahedul Islam – Policy maker/management
  148. Zara Trafford – Academic/technical expert/research field
  149. Ziyanda Damse – Healthcare worker
  150. Zolelwa Sifumba – Healthcare worker, Person affected by TB, Civil Society/Advocacy