Care Beyond Cure
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! May 2016 !
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April 30, 2016
PUBLIC INTEREST LITIGATION IN SUPREME COURT OF INDIA CONCLUDES
Final orders were passed on 01 April 2016 on our litigation in the Supreme
Court of India pending since 2007.
In its orders, the Supreme Court expressed satisfaction that “the
present petition does appear to have served its purpose and led to an
improvement in the system that was earlier prevailing” particularly in view of
the amendment of the NDPS Act. The court continues to observe that “There may
still be certain areas of concern which according to the petitioners need to be
addressed by the competent authority but the petitioner shall be free to seek
such other redress as may be warranted under the law before the authorities”.
True, it indeed served the purpose to a large extent. The questions
raised by the Court at every hearing had spurred Government action. The case
was filed in 2007 jointly by Indian Association of Palliative Care (represented
by M.R.Rajagopal), Ms Poonam Bagai (cancer survivor, chairman of CanKids and
vice-chair of Pallium India) and Dr Ravi Ghooi, the pharmacologist who had gone
to High Court of Delhi in the mid-1990s seeking access to morphine for his
mother with cancer.
There are a few people who deserve the gratitude of every palliative
care person in the country and everyone who is going to be benefited by the
case – Mr Ashok Chitale, senior lawyer and trustee of Pallium India, his
colleague and senior lawyer Mr Niraj Sharma and Ms Tripti Tandon of Lawyers’
Collective who all did all the work on the PIL _pro bono_. Thank you from the
bottom of our hearts, Mr Chitale, Mr Sharma and Ms Tandon.
WHAT BETTER TIME THAN NOW TO MAKE A DIFFERENCE
Dr Nandini Vallath, who attended CND, Vienna in March 2016 writes:_
The Commission on Narcotic Drugs (CND) consists of representatives of
government departments of the member states which meet annually to review drug
policy mandates, discuss priorities for the year and reach a consensus on
action points. The CND session that was held in Vienna for the 59th time this
March was special; it aimed at preparing a draft Outcome Document for the UN
General Assembly Special Session (UNGASS) on Drugs that was to be held this
The last time that a UNGASS on Drugs was held was in 1998, when the
global mandate on drug policies were strongly prohibitory and upheld the ‘war
on drugs’ approach in it’s language and recommendations. We are all aware of
the decades of human suffering as a consequence of the mandates in terms of
poor access and availability of essential medicines that come under
Yet, I saw first hand how time brings in new knowledge and experience,
that questions earlier perspectives and transforms viewpoints. In the few
sessions that I listened to at the CND Vienna, the atmosphere was vibrant with
a new energy. The member states one after another, recorded their official
statement, and to my surprise most of them included at least one comment on the
need for a humanitarian and developmental approach to the global drug problem
and mentioned the need to address the issue of poor access and availability of
controlled medicines. In general, the Scandinavian and Latin American countries
were the strongest advocates. India participated in the CND through high level
officials of the Department of Revenue and the Director of Narcotics Control
Division Sri Tiwari, and actively supported the reorientation of drug policies.
There were three side events addressing the the specific need to
improve access to essential controlled medicines.
i) Resolving the Global Crisis of Untreated Pain by Improving Access to
Controlled Medicines within the Framework of the Sustainable Development Goals,
organized by the Governments of Lithuania, Panama and Mexico, IAHPC, Human
ii) The public health elements of drug policy hosted by the WHO
iii) Striving for equity in the treatment of pain organized by the
Government of the UK, International Doctors for Healthier Drug Policies,
Pallium India and Kenya Hospice Palliative Care Association. I had the
opportunity to speak on the advocacy efforts towards a healthier drug policy in
India at this side event.
And sure enough, for the first time, ensuring the availability of and
access to controlled substances for medical and scientific purposes has been
included as a new independent section in the draft Outcome Document for the
UNGASS. The recommendations for action, emphasize collaborations: between
government, the UN agencies [WHO, UNODC, and INCB] and civil society at local
and global levels. In addition, it provides the advocacy framework for the
countries for this interagency participatory action.
What better time than now, to go forth and engage with the government
at the center and the states to get the simplified policy implemented and get
down to work on transforming the situation of access to pain relief in our
UNGASS PASSES OUTCOME DOCUMENT.
On 19th April 2016, 193 UN member states came together at a UN General
Assembly Special Session (UNGASS), and formally approved an Outcome Document on
“the world drug problem”
. This document was finalised a few weeks ago
[http://palliumindia.org/2016/03/an-important-step-forward/] by the 54
countries of the UN Commission on Narcotic Drugs (CND) in Vienna.
INDIA’S FINANCE MINISTER PUTS ON RECORD COMMITMENT TO PALLIATIVE CARE
At the United Nations General Assembly Special Session on Drugs at New
York on 19 April 2016, Mr Arun Jaitley, India’s finance minister said:
“India is committed to ensure the availability of controlled substances
for medical and scientific purposes, while preventing their diversion, abuse
and trafficking and ensure availability of drugs for palliative care, pain
relief and opioid substitution therapy for cancer patients and drug abuse
victims and has in May, 2015 notified uniform and simplified rules relating to
‘Essential Narcotic Drugs’ to remove regulatory barriers”.
The department of Revenue of Ministry of Finance has for the last two
decades been pro-active about the principle of balance – that while preventing
abuse, we also have a responsibility to make opioid medication available for
those who in pain. Thank you Mr Arun Jaitley and thank you, all at department
_ Click here to read the statement by Mr Arun Jaitley.
HEALTHY INDIA ALLIANCE GETS ITS ACT TOGETHER
recently-launched Healthy India Alliance (HIA) is the Indian arm of the global
NCD Alliance which has been very successful in advocacy for Prevention and
control of Non-Communicable Diseases (NCDs) internationally.
HIA had a 3-day National Consultation in New Delhi on 25-27 April 2016.
Seen here at the inaugural function are Ms Radhika Srivastava of Hriday-Shan,
Dr Srinath Reddy of PHFI, Dr Henk Bekedam, WHO representative for India, Mr
Rajeev Kumar, Director (NCD) of Ministry of Health, Government of India and Dr
Rajesh Bhalla, medical adviser to Indian Cancer Society.
The national consultation was supported by WHO (India), American Cancer
Society and the NCD Alliance. Pallium India was represented by Dr Kumar
Abhishek and Dr M.R.Rajagopal who took the lead in one of the 4 thematic
workshops on “Patient & Family Engagement and Palliative Care”.
THE REAL “WAR ON DRUGS”
Dr Stephen Connor writes from New York – the venue of the United Nations
General Assembly Special Session on Drugs held from 19-21 April, 2016:
“Actually, the world problem is the tragedy that 75% of the world’s
population – that is, 5.58 billion people – do not have effective access to
opioids for pain relief. Over 18 million people die in pain each year. I hope
no one you love is among them. Yes; we have a unique problem in the US with
abuse of prescription drugs and heroine use, but for us working in palliative
care in low and middle income countries, the real tragedy is the millions that
die in pain. Living and dying in pain: it doesn’t have to happen.”
PALLIATIVE CARE NURSES CONFERENCE IN KERALA – THE FIRST EVER
Congratulations to palliative care nurses in Kerala. Out of their own
initiative, the first nurses’ palliative care conference was conducted on 22,
23 April 2016 in Kozhikode.
We hear it was a huge success. The enthusiasm of the participants went
way beyond the organizers’ expectations. They had arranged a hall which could
accommodate 450. Somehow, they managed to squeeze in 550, and still had to turn
many away. A lot of educational programs were conducted and greedily lapped up
by the participants. Pallium India’s training coordinator, Ms Sheeba Shaju, and
nurse Aswathy Devadas were among the teaching faculty. They report that they
themselves feel thrilled and enthused by the event.
KUDOS, PALLIATIVE CARE NURSES OF KERALA!
“COULD YOU GET ME A PACK OF CARDS AND NOT TELL MY HUSBAND PLEASE?”
To Neha, a mother of two with metastatic nasopharyngeal cancer, hospice meant
the transition from “I do not want to live” at the end of the hospital
treatment to “Could you get me a pack of cards and not tell my husband please?”
The latter was in the hospice where she found solace and spent her last days by
This narrative “ Hospice – Where Peace and Turmoil Coexist
[http://www.tandfonline.com/doi/full/10.3109/15360288.2015.1134750] ” by Dr
Vidya Viswanath, published in the Journal of Pain and Palliative Care
Pharmacotherapy, reinforces the fact that the hospice is truly a philosophy of
care where powerful and contrasting emotions do coexist.
The Journal of Pain and Palliative care Pharmacotherapy
[http://www.tandfonline.com/ippc] is an indexed journal that has made the
narratives [http://explore.tandfonline.com/page/med/ippc-pain-narratives] free
access. The Journal welcomes your narratives on pain, suffering and relief.
Tell your story to the world and help improve palliative care awareness.
SEATTLE SINGS TO EASE PAIN IN INDIA
Seattle Saptaswara and Care & Share joined hands to organize a musical
extravaganza to support palliative care in India. We thank the organizers,
musicians, volunteers and the Seattle Malayali community for their contribution
towards providing pain relief to the suffering millions in India.
_Ashley Elanjickal from Care & Share writes to us about the event:_ "
Seattle Saptaswara [http://www.seattlesaptaswara.org/] delivered yet
another spectacular show on April 16th, 2016 at Kirkland Performance Center in
Kirkland, Washington. Since 2009, Ganolsavam is the annual fund raiser of
Seattle Saptaswara to support Care & Share’s projects in Kerala, India. This
was their best ever fund raiser, gathering more than $25,000 after expenses for
the Palliative Care projects driven by Pallium India. Close to 40 volunteers
spent close to 3000 hours over a span of six months for the meticulous
execution of the event. We specially thank the core band of 20 musicians for
sacrificing three months of their weekends for the benefit of a noble cause.
With the awesome support of Seattle Malayalee crowd, none of the efforts were
gone unnoticed. Thank you Seattle Saptaswara, Care & Share volunteers, and
Seattle Malayalee crowd for the grand success of the program. Thank you Pallium
India for providing us with the educational content, fund usage report from our
previous events, and commitment of reaching quality Palliative Care to
thousands of people!"
More info about the event is available here
THANK YOU ASHAS, FOR WHAT YOU DO
On world health day, the 7th of April 2016, let us pay our respects and
thank a group of people who have made a huge positive change in people’s health
in India – ASHAs (Accredited Social Health Activists). There have been close to
one million of them in India since its inception about 10 years ago.
On this day, the ASHA mentoring group of the National Health Systems
Resource Centre (NHSRC) of Ministry of Health of Government of India met to
discuss the progress and to make future plans. A fact that was brought out says
a lot about the program’s effectiveness.
ASHAs were once expected to accompany pregnant women to the health
centre for an antenatal check.
The program was so successful that most women go on their own now; no
persuasion needed. So a new instruction went to ASHAs: you do not have to
accompany the women anymore.
They still did.
_“They are people from our community. They ask for our help. How can we
Thank you ASHAs.
OPEN SOCIETY FOUNDATIONS SUPPORTS PALLIATIVE CARE AGAIN
Open Society Foundations [https://www.opensocietyfoundations.org/] has
done a great deal to decrease the burden of pain and suffering in this world.
Though India has not been a direct focus of the Foundation’s work, we have
benefited indirectly through many programs, including the leadership
development initiative (San Diego and Columbus, Ohio) and the support to pain
and policy studies group and its fellowship programs, and so on.
And here they support the cause again in advocacy.
See the video
featuring the Chairman of Pallium India, Dr M. R Rajagopal: _ A Push for
Balanced Drug Policy Is Transforming Pain Relief in India
CANCER HELPLINE, HELP DESK
_Times of India_ reports
on 26 April that a new help desk has been launched at MNJ Institute of
Oncology and Regional Cancer Centre:
A cancer help desk and a cancer helpline from the field of oncology and
palliative care offers voluntary services to cancer patients, who need an
honest second opinion on cancer treatment. It has been launched at MNJ
Institute of Oncology and Regional Cancer centre. MNJ hospital’s helpdesk will
address the medical needs of patients hospital as per agreed terms, such as
providing prosthetics, chemo port, chemo drugs etc, which are not covered under
Aryogyasri and the hospital.
WHO IS AFFECTED, DO WE REALLY CARE?
In a major decision, the government of India has decided to say Goodbye
to consultants from abroad
who had been working with our health care system – we would like to add, with
our abysmally inadequate health care system.
Do they really offer a threat to the country? The article quotes one of
the most astute and experienced administrators in the country, Shri Keshav
Desiraju, the former Principal Health Secretary of India and grandson of the
revered Sarvepalli Radhakrishnan, the first Vice President and later President
of India. Shri Desiraju said they “were doing a lot of detailed work that
nobody else had the time to do,” assisting senior bureaucrats who “simply had
no time to handle the volume of paperwork.”
Who is going to be affected by this decision? Certainly not the health
care for the affluent city-man. Only the villager who already gets such poor
access to care. Does anyone really care?
SEEKING EXPERIENCED INTERNATIONAL PHYSICIANS
Pallium India seeks clinically experienced international physicians who
are able to practice and teach in a variety of settings, include home visits,
outpatient visits, and the inpatient unit. They must be adaptable to new
environments and be able to commit to over 3 months. Pallium India will provide
translators as most patients will prefer to speak Malayalam. Teaching will be
done in English.
If you are interested, please write to us: info@xxxxxxxxxxxxxxxx
SCHOLARSHIP PROGRAM FOR CERTIFICATE COURSES
Indo American Cancer Association (IACA), in association with TIPS (an
organ of Pallium India), is offering a scholarship to undergo a 6 weeks
residential/non residential palliative care training course at selected centres
* MNJ Institute of Oncology, Hyderabad, Telengana. Contact:
* Trivandrum Institute of Palliative Sciences, Trivandrum, Kerala.
Contact: education@xxxxxxxxxxxxxxxx [mailto:education@xxxxxxxxxxxxxxxx]
* TATA Medical Centre, Mumbai, Maharashtra. Contact:
muckadenma@xxxxxxxxxx [mailto:muckadenma@xxxxxxxxxx] , anuja.damani@xxxxxxxxx
* Gujarat Cancer and Research Institute, Ahmedabad, Gujarat. Contact:
* Bhagwan Mahaveer Cancer Hospital & Research Centre, Jaipur, Rajastan.
Contact: palliumjaipur@xxxxxxxxx [mailto:palliumjaipur@xxxxxxxxx]
TYPE OF SCHOLARSHIP
* Depends on performance of the candidate in the telephonic interview
conducted by IACA interview panel.
* Full support to the outstation candidates includes – Travel,
accommodation, canteen, local travel, fees with cap on all items. Partial
support is given to the local candidates.
* Doctor – MBBS
* Nurse – BSc/GNM
Please click on the following link for more info:
_For more information on our courses, please visit:
http://palliumindia.org/courses [http://palliumindia.org/courses] _
PALLIUM INDIA IS HIRING – MEDICAL SOCIAL WORKER
* Experience: 1-2 years
* Location: Trivandrum, Kerala
* Evaluation & management of problems of patients & families requiring
palliative care with particular attention to social issues.
* Auditing of palliative patient care with intent to identification of
problems and bringing up possible solutions to problems to the attention of the
* Taking part in on-going research activities or initiating need based
research programs with the approval of scientific committee.
* Liaising with the Government departments for getting Scheme related
information for patients
* Taking steps to publish reports/data from audits/research programs
with the objective of improved patient care anywhere.
* Maintaining regular reporting to the superiors as advised in the
* Attending & organizing educational programs on behalf of Pallium
* Maintaining good relations with clients, donors, well-wishers and
CONTACT: INFO@xxxxxxxxxxxxxxxx / +91-9746745497
AS THE US IS AWASH IN PAINKILLERS, THE DEVELOPING WORLD IS IN DIRE NEED OF THEM
_By Samuel Oakford_
The elderly woman arrived with her husband at the hospital in southern
India in excruciating pain. She had cancer in her head and neck, and was forced
to spend most of her time immobile, lying on her back because moving hurt too
much. Still, she endured a trip of several hours to visit the facility in
Kochi, a city in the southwestern state of Kerala. Doctors in the hospital’s
oncology department looked her over, determined she was in the late stages of
the disease, and tried to send her away with nothing more than aspirin and
other over-the-counter painkillers that were essentially useless in relieving
Eventually, the woman and her husband ended up in the hospital’s
anesthesiology department in the office of Dr. Nandini Vallath. The physician
administered a dose of intravenous morphine, and as the drug took effect, the
woman’s body eased and she began to weep.
“I remember this patient sitting up and crying because it was the first
time she had any relief from medication, after months of begging for help,”
Vallath said. Continue reading->
HOW HISTORY AND PARANOIA KEEP MORPHINE AWAY FROM INDIA’S TERMINALLY-ILL
_by Ankita Rao_
Lotika Rajuwal needed a stronger drug.
The 34-year-old nurse lay on a cot at her home in Nadia, West Bengal,
last September. The red tilak (vermillion mark) on her forehead just reached
her hair, cropped short after another round of chemotherapy—treatment for acute
Rajuwal tried to ignore the pain in her back and stomach, passing time
knitting, and cooking if she felt strong enough to stand. The doctor had been
administering tramadol, a narcotic, to her for the past two weeks. But what she
needed was much harder to come by in rural India: morphine.
A popular painkiller naturally derived from opium, morphine is a
product of the poppy plant. India has been the leading producer of opium for
decades, accounting for 90% of the global production, according to a report
(pdf) by the International Narcotics Control Board. In 2011, the country
exported 11.6 tonnes of it.
Yet, within its own borders, India’s Narcotic Drugs and Psychotropics
Act, 1985, has built a difficult obstacle course for health workers and
patients trying to access morphine, at times requiring hospitals to have five
separate licences. Even though farmers in states such as Uttar Pradesh and
Rajasthan continue to grow poppy, only about 4% of Indians who need morphine
actually received it in 2008, according to a Human Rights Watch report.
IN THE HOSPITAL, RESISTING THE URGE TO DO MORE
_by Jessica Nutik Zitter, M. D._
There was absolutely no way around it. She was dying. I gave her a few
hours at best, with maximum pedal to the metal intensive medical care.
Paramedics had picked up this homeless woman after she collapsed under a bridge
in Oakland, Calif. Her heart had completely stopped. She had died under that
bridge. But the paramedics had somehow pulled her back, with a jump-start to
her heart. And then brought her right to my service in the intensive care unit.
She had no known family, and the police were trying to track down
anybody who could speak for her. No luck so far, the social worker told me.
She was emaciated, with an incongruously large, round belly, hard as a
basketball. Her hair was knotted and tufted, her lips cracked and dry around
the breathing tube. By the time I saw her, she had already been treated by many
health care professionals. They had done CT scans, inserted large catheters
into larger veins, and started various drips.
Now it was my turn to take over.
ADVOCACY, ADVOCACY AND ADVOCACY
“But the pain must be there for a purpose. Would it not be bad for the
body if it is removed artificially?” asked Mr Swamy.
His question was born out of the philosophy of life that he had lived.
He believed in naturopathy – living with nature, being its friend, not abusing
his body with tobacco, alcohol or the chemicals in fast foods.
He had been a vegetarian all his life and that life had done him well
right up until he was 64, having never had a serious illness in his life. Now,
with advanced cancer, pain had driven him to me.
I embarked on a tedious explanation, starting by agreeing with him
about how pain is essentially protective, going on to how it becomes senseless
when it has ceased to be a warning sign.
DEATH, BE GENTLE
An estimated 8-10 million people in India require palliative care every
year. But less than 2 per cent of them have access to pain relief, doctors tell
Amal Sarkar thought it was a throat infection. No, there was no fever,
but the 63-year-old had trouble swallowing. A fortnight later, when the problem
persisted, he consulted a doctor.
A few tests later, the retired West Bengal government employee was
diagnosed with cancer of the tongue. His treatment – chemotherapy, radiotherapy
and other medical interventions – started in 2012. He died in 2014.
“In his final days he was only on antibiotics and paracetamol. No
planned and specific medication was provided by his doctors,” his wife, a
retired schoolteacher, says.
PALLIATIVE CARE INFORMATION CENTRE [HTTP://PALLIUMINDIA.ORG/INFO-CENTRE]
Contact Pallium India’s Information Centre (9 am to 12 noon) for
information related to palliative care and about establishments where such
facilities are available in India. Telephone: +91-9746745497 or E-mail:
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
We shared this beautiful little poem by an unknown author on our
It so obviously resonated with the grief of thousands of people who had
ever lost a loved one that it was shared by over 52,000 people.
We would like to share it with you here.
If anyone knows the author, please let us know.