Advocates urge Prime Minister Modi to take immediate action to save a young woman, dying of XDR-TB and to roll out life-saving innovations to tackle the growing burden of drug-resistant TB in India.
An 18 year-old young woman in India, dying of extensively drug-resistant TB (XDR-TB), has been denied access to TB drug bedaquiline by the Revised National TB Control Program (RNTCP). The woman and her family have appealed to the Delhi High Court. The family is battling not just for access to bedaquiline, but also for delamanid, which has not yet been registered in India.
In an open letter sent to the Indian Prime Minister Narendra Modi on 13 January 2017, concerned citizens and Indian and global organizations working on treatment and public health expressed their concern on the bureaucratic delay in the roll out of diagnostics and new TB drugs, bedaquiline and delamanid, to tackle the growing burden of drug-resistant TB in India and urged the Prime Minister to take immediate action.“Patients with multi- or extremely drug-resistant TB are treated inadequately in India and often die because not enough medications are available to compose a suitable regimen.”
In the letter, advocates requested instant implementation of three life-saving interventions in the country: 1) immediate scale up of bedaquiline; 2) registration of delamanid; and 3) expansion of drug susceptibility testing. “Failure to ensure access to these interventions is a clear violation of the rights to health and to the benefits of scientific progress.”
Advocates strongly urged the Prime Minister as well to take immediate action to save the young woman, diagnosed with XDR-TB and struggling to access new TB drugs from RNTCP. “Her plea to access bedaquiline from RNTCP and to import delamanid in small quantities for personal use on compassionate use grounds is pending before the Delhi High Court. Every day's delay brings her closer to death. We request you to direct RNTCP to provide her with life-saving drug on an immediate basis.”
To read the full letter, click here.
The letter is endorsed by the following signatories:
Organizational signatories:
ARK foundation, Nagaland (India)
Asia Catalyst (Thailand & USA)
Community Research Advisors Group (Global)
Evergreen Welfare Society, Nagaland (India)
Global Health Educators Initiative (Nigeria)
Global TB Community Advisory Board (Global)
Health GAP (Global Access Project) (Global)
HepCoN, Nagaland (India)
Hepatitis Coalition of Sikkim (India)
IMAXI Cooperative (Global)
Indian Drug Users Forum (IDUF) (India)
KANCO (Kenya)
Kekhrie Foundation, Nagaland (India)
Madurai Meenakshi Chokkanadar Foundation (India)
Mon Users' Network, Nagaland (India)
Nagaland Users' Network (India)
Network of Naga People Living with HIV/AIDS, Nagaland (India)
Network of Nagaland Drugs and AIDS organisation (NNagaDAO) (India)
PLUS, Coalition Internationale SIDA (Global)
Sankalp Rehabilitation Trust
SECTION 27 (South Africa)
Sikkim Drug Users' Network (India)
Southern African AIDS Trust (South Africa)
South Indian Drug Users Forum (India)
South Indian Harm Reduction Network (India)
Treatment Action Group (USA)
Volunteers for Development Nepal (Nepal)
SASO, Manipur
Manipur Network of People living with HIV/ AIDS ( MNP+)
Rural Area Foundation, Nagaland
HepFoM, Meghalaya
Individual signatories:
Enrique Delgado, TB activist and XDR-TB survivor (Spain)
Paul Lhungdim, President - The Delhi Network of Positive People (India)
Ketho Angami, Nagaland (India)
Stephen Lewis and Paula Donovan, Co-directors, AIDS-Free World (Global)
Brook Baker, Northeastern University School of Law (USA)
Bazo Kire, Treatment Activist (India)
Abou Mere, Kripa Foundation (India)
Nini Pakma, President, Meghalaya Drug Users Network (MeDUNet) (India)
Pravasinin Pradhan, President, Kalinga Network of People living with HIV/AIDS (KNP+), Odisha (India)
A.Sankar, Executive Director, Empower India, Tamil Nadu (India)
Aditi Sharma, health activist (UK)
Prashant Sharma, Sikkim (India)
Tadokera, Human Sciences Research Council (South Africa)
S.Srinivasan, LOCOST, Vadodara, Gujarat (India)
Dr Mohan Rao, Professor, Social Medicine and Community Health, Jawaharlal Nehru University, Delhi (India)
V. Karthi Krishnan, Hoper's Foundation, Chennai (India)
Ivyreen Warjri, Meghalaya (India)
Dean Lewis, Western Harm Reducation Network (India)
A. Sankar, Empower India (India)
Lalruatfeli, Mizoram