PALLIUM INDIA INC
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Mission Statement
Pallium India Inc aims to reduce pain and suffering from life-limiting diseases among one-sixth of the world’s population that lives in India. Approx. 4 million US citizens are of Indian origin. The lack of palliative care services in India affects them emotionally, socially and financially, requiring frequent travel to India resulting in absence from work. In addition to mobilizing resources for this work in India carried out by ‘Pallium India’ (a registered ‘not for profit organization’), it would also promote voluntary services of experts in USA. Funds raised would be used to (a) catalyze the development of pain relief and palliative care services and their integration in health care (b) provide palliative care education and catalyze development of training centers to train doctors, nurses, medico social workers and volunteers (c) raise awareness about the need for palliative care. (d) Advocacy for delivery of services, education, building capacities, policy, research, and information on palliative care.
About This Cause
Pallium India Inc is a ‘Not for Profit organisation’ registered in the State of New York bearing registration No.4784800. It aims to reduce human pain and suffering from life-limiting diseases among one-sixth of the world’s population that lives in India. Approximately, 4 million US citizens are of Indian origin. The lack of palliative care services in India adds huge emotional, social and financial burden to them, often necessitating frequent travel to India resulting in absence from work. In addition to mobilizing resources for this work in India, it would also promote voluntary services of experts in USA, where palliative care is at an advanced stage of development. Contributions received by Pallium India Inc (EIN No.47-4504650) are exempt from Federal Income Tax under Internal Revenue Code (IRC) section 501 (c) (3). Donors can deduct contributions they make under section IRC section 170. Pallium India (est. 2003 in the state of Kerala in India), a Registered ‘Not for profit organization’ was founded by Dr M.R. Rajagopal (considered as the Father of palliative care in India), its chairman who is also one of the Directors of Pallium India Incorporated. He is spearheading this field of medicine in India. He has received global recognition for his pioneering crucial work including the Alison Des Forges award by Human rights Watch for extra ordinary activism. Pallium India’s demonstration unit ‘TIPS’ (Trivandrum Institute of palliative sciences) is the World Health Organisation’s collaborating center (WHOCC) for Training and Policy on Access to Pain Relief. Pallium India’s aim is to ensure that every person has access to effective pain relief and quality palliative care along with decease-specific treatment across the continuum of care. Currently, palliative care services reach only a small fraction of those in dire need of the service. Funds raised would be utilized towards: (a) Building palliative care clinics in cancer and general hospitals across India (b) Build training centers across India to train Doctors, nurses, medico social workers, volunteers etc. (c) Raise awareness about the seriousness of the problem of pain relief for diseases like cancer (d) Raise awareness of need for palliative care departments as 80% of cancers are diagnosed too late for any curative treatment. (e) To catalyze the development of effective pain relief and quality palliative care services and their integration in health care across India through delivery of services, education, building capacities, policy, research, advocacy and information (f) To sponsor, host and/or participate in events and activities that promote the advocacy of palliative care. Palliative care responds to physical, psychological, social and spiritual needs of patients and their families and extends if necessary to support the family in bereavement. It is “patient centered” rather than “disease-focused”. The success of this movement anywhere would depend on the extent of involvement of the local community in creating awareness and assisting in the rendering of palliative care services, which the tiny state of Kerala has achieved significantly and shown the way forward. Hence the model of palliative care practiced here came to be known worldwide as the Kerala model of palliative care and has become a subject of study and emulation in other parts of the world. Therefore, whilst the funds raised would go towards advancing this spin-off effect, it would also help Pallium India imbibe appropriate lessons in palliative care from the rest of the world through expert faculty. Pallium India also works with the Central and State Governments in introducing palliative care as a subject of study in the curriculum of Medical colleges and introducing and strengthening palliative care services. Pallium India has worked to defend the citizens’ right to access to pain relief. In particular, Pallium India’s initiative resulted in amendment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act by the Parliament of India in 2014 and the creation of the National Program of Palliative Care (NPPC) by Government of India in 2012. Amendment of the NDPS Act resulted in the relaxation of the stringent norms for the availability of pain relieving drugs such as Morphine that greatly provides relief to those suffering needless pain. Pallium India established Trivandrum Institute of Palliative Sciences (TIPS) as its flagship. TIPS, in addition to symptom control and psycho-spiritual care, provides social support to patients and families in the form of physical aids, educational support to children, vocational rehabilitation and food kits for the starving. Pallium India also organizes a meeting of bereaved members of patients families every month called “Unarvu” (awakening) and a support system for children of patients called “Kuttikootam” to counsel, mentor and assist them in solving their problems. It publishes a monthly journal called “Sahayatra” (Journey together) and also monthly newsletters. In addition to the conventional palliative care of the West, Pallium India ventures into areas of health care that are unaddressed in India like rehabilitation of people with paraplegia. We also advocate for the rights of the dying, and are heart and soul into advocacy for a humane and meaningful law covering end-of-life care. Other achievements by Pallium India: 1. Developed palliative care services in 16 states and 2 union territories. 2. Catalyzed the development of palliative care training centres offering quality education in palliative care in the cities of Trivandrum, Hyderabad, Ahmedabad and Jaipur. 3. Initiated and spearheaded a Public Interest Litigation in the Supreme court of India for improved access to palliative care. 4. Worked with the Department of Health and Family welfare to develop the National Program for Palliative care (NPPC) for India’s 5 year plan, which was declared in November 2012. 5. Developed the “ National standards tool” to ensure quality palliative care and the training of doctors for recognised Medical Institutions. 6. Contributed essential educational tools for palliative care with the help of national and international experts, including curriculum for: a) EPEC-India (Education in ‘Palliative’ and ‘End of Life care’ – India) b) Under graduate Medical and Nursing training. c) Six weeks certificate training for Doctors and Nurses. d) The training of doctors for “Recognised Medical Institutions”. e) We also played a major role in the development of the curriculum for the MD course in Palliative Medicine on behalf of Medical Council of India. 7. Advocated for palliative care nationally and internationally with regard to advocacy for improved access and quality of palliative care. Apart from working with national organizations and media, this included: a) Creation of the Morphine manifesto (http://palliumindia.org/manifesto/) b) Participation in the movie series “Life Before Death” (http://www.lifebeforedeath.com/movie/index.shtml) c) Working with Human Rights Watch, the NCD Alliance, the UN Special Rapporteur for Torture and other agencies 8. Initiated and followed up a proposal that resulted in the declaration of a “Palliative Care Policy” by the Government of Kerala, making it the first Government in a developing country to have such a policy. 9. Developed outreach programmes aimed at assisting and providing support to institutions interested in starting a palliative care service anywhere in India. Major Projects accomplished in recent years and in Progress In collaboration with: a) Tata Trust - Improving access to Pain relief and Palliative care in India, Rs.244.27 lakhs (USD 360k) b) Social Justice Department, Govt of Kerala - Rehabilitation of Adult Paraplegic patients – Rs. 172.15 lakhs (USD 255k) c) Savitri Waney Charitable foundation (UK) - Lymphodema and Physiotherapy Project – Rs.92.40 lakhs (USD 135k) d) Indian American Cancer Association – Scholarship program for palliative care courses. e) Jeev Daya Foundation (US) – Capacity building of palliative care services. 10. Awards Pallium India has been the recipient of many awards, some of which are: a) Award for Excellence in Pain Management in Developing Countries: International Association for Study of Pain, Montreal, Canada. Oct 2009. b) Marie Nyswander award for work on improving access to pain relief, International association for pain and chemical dependency, New York, 31st October 2008. c) “Care and Share” annual award for social work, “Care and Share”, USA, February 2007. d) Citation of Indian Association of Palliative care, annual international conference of Indian Association of Palliative care, February 2006. e) Shri Satya Sai award for Human Excellence 2016. f) Alison Des Forges award for extraordinary activism from Human Rights Watch, 2014 Publications: There have been more than twenty-five publications contributed by Pallium India in various scientific journals apart from similar contributions in text books or chapters in various text books. Pallium India’s work has been featured in many international newspapers and other media including New York Times, BBC, Nature Outlook and so on. A few of them which will bear testimony to our work are: 1. In India: A quest to ease the pain of the dying. The New York Times, 2007. http://www.nytimes.com/2007/09/11/health/11pain.html?_r=1&ref=science&oref=slogin 2. Why Kerala is the best place in India to die. BBC. http://www.bbc.com/news/world-asia-india-36137285 3. Palliative care: the other opioid use. Nature Outlook. http://www.nature.com/nature/journal/v535/n7611_supp/full/535S16a.html 4. The extraordinary Indian: the doctor who makes a difference. Rediff.com report. http://www.rediff.com/news/report/slide-show-1-extraordinary-indian-the-doctor-who-makes-a-difference/20140304.htm 5. How do you treat pain when most of the world cannot get opioids: http://www.latimes.com/opinion/op-ed/la-oe-rajagopal-pain-opioids-20150304-story.html