February 2012 Newsletter
For all of you who have been faithful supporters of the palliative care movement, we now have cause for celebration.
Over the past few weeks, the global pain crisis has hit the mainstream. People are talking about it on the radio, on TV, in newspapers, and across the Internet on blogs and social networks. They are recognizing that we need to do more, much more, to ensure that everyone on earth has access to pain relief and quality palliative care when and if they need it.
The impetus? The release of the feature film “LIFE Before Death” on the 1st of February in Singapore, and the numerous screenings which followed all over the globe.
The film’s honest and accessible look at pain management and end-of-life questions struck an emotional chord with audiences around the world.
The film, and the meetings and connections it created, has led to new initiatives and partnerships.
The documentary “LIFE Before Death” continues to wow audiences around the globe, with its unflinching, emotionally accessible look at the need for palliative care. This past weekend, it screened in the capital city of Australia, Canberra, at Parliament House Australia.
Over 200 people attended the nearly sold out showing. Palliative Care Australia rolled out an actual red carpet for the event, and hosted a pre-screening party. The Hon Mark Butler, Minister for Ageing and Mental Health, introduced the film and then stayed to watch the film, which deeply moved him.
Luminaries from palliative care and cancer were in attendance. Dr Scott Blackwell, David Hill and Dr Yvonne Luxford all spoke on the issue prior to the screening.
There were several ministers in the audience along with doctors, nurses, patient advocates, pharmaceutical industry reps, NGO reps and bureaucrats as well as general audience. Two senators leading the inquiry into palliative care spoke to the audience following the screening.
The film was screened with a high level of audience interaction: laughs, gasps and tears. When the credits rolled, the audience was initially silent … and then erupted with applause.
After the screening, directors Sue Collins and Mike Hill fielded a lively Q&A session. Mike writes to us in an email:
“I made a point of wearing the Stop the Pain tee shirt and about 10 people asked me if they could get one after the screening. Someone even asked me to take it off on the spot and give it to them when I was going to the bathroom.”
Our warmest congratulations to Mike, Sue, and all the others who made this remarkable film and video series.
The level of awareness of this crucial issue is growing by leaps and bounds thanks to their efforts.
The response has truly been awe inspiring. We have been impressed not only with the number of newspaper articles, blog posts, and other items, but also with the high quality of coverage of this pressing issue.
For example, The Straits Times of Singapore ran an article in their Sunday edition, “Doctor’s pain relief mission for terminally ill” (subscription req’d), that provided a solid context to help people understand the crucial need for this type of medicine.
The Times of India had a piece, “Helping face death in dignity” (subscription req’d), that provided a compelling history of the movement for palliative care in India, with a focus on Pallium India. The article sums up the progress that has been made:
“The Kerala model of palliative care has begun to spread the wings elsewhere in the country. Small movements have been successful in states like Andhra Pradesh, Uttar Pradesh, West Bengal, Bihar and Mizoram. Pallium India which has already set up a palliative care centre in Hyderabad is on the process of setting up full-fledged centres in the northern states also.”
The Sydney Morning Herald in Australia ran a piece that picked up on the fact that the film “Life Before Death” is narrated by the well-known actor David Suchet, best known for his portrayal of the inimitable Hercule Poirot in the Agatha Christie mystery series. The headline reads “Poirot and the battle with pain,” and shows a picture of Suchet in his signature role, complete with waxed moustache and arched eyebrows. The article tackles the issue in a way that is both accessible to the general public and hard-hitting. It reads, in part:
“The absence of pain medication, especially morphine-style drugs, in the developing world has been a result of the focus on ‘cure rather than care’, poor health systems but also regulations against narcotics use.
Melbourne filmmakers Mike Hill and Sue Collins, say there is zero public understanding that the solution to the ‘appalling’ problem of untreated pain is simple – morphine is inexpensive and easy to administer.
‘I think it is one of the least recognised global health issues,’ Hill told the Herald yesterday.”
Thanks to this film and the many hands that went into disseminating its message, the issue is now on the media’s radar at a never-before-seen level.
The next step, of course, is to ensure that this spate of coverage isn’t lost as the next “big thing” grabs the press’s attention.
For those who are committed to seeing things through, there is much work to do, and much to be glad about.
To coincide with the premiere of the LIFE Before Death feature film and World Cancer Day, the Lien foundation organised a wonderful initiative in Singapore. 70 volunteers took to the streets of the City to distribute more than 20,000 syringe-shaped pens and information about the crisis in untreated pain. This from the Gabriel at Lien:
On 1 Feb, we have volunteers in Singapore to distribute pens with an insert, which says:
“Go to palliumindia.org and find out how just US$20 can provide a month’s pain relief to patients at the remarkable Pallium India – an organisation that’s changing the way people view palliative care.”
This will also be provided on the media releases.”
Why not donate? Remember, just US$20 = one month of pain relief.
We’ve also been given the wonderful news that in addition to the donations from supporters in Singapore, the Lien Foundation has pledged US$100,000 to Pallium India. Half of the funds will go to buying pain relief medicine for the poor and the other half to train doctors and nurses in pain treatment.
Thank you Lien Foundation, Volunteers and Donors!
- Watch the interview with Assoc Prof Cynthia Goh and Dr Rajagopal on Channel News Asia’s AMLive on our blog…
- News report in TODAY: The need for better pain management
February 4th was the day that united the world in the fight against cancer through raising awareness, educating the public, and lobbying for change. It is only by every person, organisation, and government, individually doing their part, that the world will be able to reduce the global cancer burden. So get involved and do something this World Cancer Day – because Together it is possible!
A memorandum of understanding to this effect was signed on February 16, 2012 at Singapore’s Changi airport by Mr Lee Poh Wah, the radical philanthropist & chief functionary of the Lien Foundation, and Pallium India’s Dr Rajagopal.
Mr Poh Wah will soon be visiting India to see our work first-hand.
Thank you, Lien Foundation and Poh Wah. We look forward to Welcoming you to Trivandrum and our work together.
Awarding-winning LIFE Before Death Series continues…
The “Life Before Death” series of short movies continue to be released, one every week. They are not only very informative to the public; but also make powerful advocacy material for the palliative care community. Here are the two most films:
Thank you, Mike Hill and team of Moonshine Movies and thank you, Lien foundation,International Association for the Study of Pain, The Mayday Fund, the Union for International Cancer Control and The Institute for Palliative Medicine at San Diego Hospice International Programs. For more information and to view the entire series, visit the Life Before Death website…
Morphine is one of the world’s least expensive, most effective pain medications. Yet millions across the developing world and beyond are denied access to it. If you haven’t already, please do sign the Morphine Manifesto. And here are some more items of interest on the topic:
- MORPHINE: The Essential Medicine!
- Shattering Myths About Morphine
- Shining a Light on Pain Relief
- We also spotted this piece in the New York Times: A Motorcycle, MORPHINE and a Hospice.
FROM PALLIUM INDIA-USA…
Our USA arm, Pallium India-USA has been very busy of late raising funds and awareness for Pallium India’s work in India, along with developing programs to serve the Indian community in the USA that is in need of culturally sensitive guidance and care around end-of-life issues.
The group hosted a Special Event in Silicon Valley last month that drew a large crowd of Silicon Valley engineers, healthcare workers, and others who care about the issues. Dr. M.R. Rajagopal, chairman, gave an engaging and emotionally hard hitting talk that led to a lively discussion. The event was covered in the US newspaper, IndiaWest.
IN OTHER NEWS
Here is a clear recommendation from the American Society of Clinical Oncology:
“…substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes”
This provisional clinical opinion is based on seven randomised controlled studies.
The article emphasizes that palliative care should not be misconstrued as only “end of life care”.
“It is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”
- Read in full: American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care
23 chosen leaders from 11 countries got together at The Institute for Palliative Medicine in San Diego, California, USA with 10 mentors and several coaches, from 5 to 13 February 2012.
The brain child of Dr Kathleen Foley and Ms Mary Callaway of Open Society Foundations, and developed and run by Dr Frank Ferris of San Diego and team, the Leadership Development Initiative (LDI) is a novel two year program.
The leaders do not learn palliative care here; they have had plenty of that already. At San Diego, they develop leadership skills, an obviously essential part of training of any pioneer.
With four leaders and one mentor from India – the Indian flag was prominent!
Watch a video on the Leadership Development Initiative (LDI) on our blog…
The winner of the Bruce Davis Gold Medal in Palliative Medicine has been announced!
Dr Sherley Christobel Louis, a postgraduate student of radiotherapy at Bangalore Medical College and Research Institute won the award for 2011 after she placed at the top in a special exam for the award. The Hindu reports:
Sherley Christobel Louis, a postgraduate student of radiotherapy at Bangalore Medical College and Research Institute, has won the Bruce Davis Gold Medal Award for 2011 after she came first in the national-level Bruce Davis Gold Medal Examination. This was announced here on Friday by a spokesperson for the Institute of Palliative Medicine.
The examination for young doctors is conducted by the Kozhikode-headquartered Institute of Palliative Medicine, a World Health Organisation collaboration centre. The award, being given since 2004, had been instituted in memory of philanthropist Bruce Davis. It carries a purse of Rs.25,000 and a certificate. It would be presented to Dr. Sherley at the 19thinternational congress of the Indian Association of Palliative Care in Kolkota in February.
The news is also covered on the Palliative Care India blog.
Bruce Davis, who provided the funding for the prestigious Rs.25,000 award for the gold medal, is a longtime supporter of palliative care in India. He funded the construction of the Institute of Palliative Medicine at Calicut, and is supporting Pallium India and several palliative care centers in India.
Pallium India have named our recently constructed training centre at our headquarters in Trivandrum after Mr. Davis.
Rev. Hamilton Inbadas, a friend of Pallium India who currently is doing his PhD at the University of Nottingham, UK, sends us this information for the benefit of anyone who may be interested.
We are interested in applicants who can contribute to the development of an exciting and innovative portfolio of research and scholarly activity, with a particular focus on improving palliative and end of life care (including education) in ‘resource poor contexts’ in UK or non-UK contexts.
Application Deadline: 28 February 2012
Pallium India came across Dr Bishnu Dutta Paudel first during the International Pain Policy Fellowship program at Madison-Wisconsin.
Dr Bishnu is an oncologist with keen interest in palliative care from Kathmandu. We have been greatly appreciative of the way in which Dr Bishnu tackled the opioid availability issue in Nepal and worked with the Government to establish a system for uninterrupted availability of morphine in Nepal.
We are glad to report that Dr Bishnu became the first winner of the Palliative Care Award for South Asian Countries, newly established by Cancer Aid Society (CAidS). The award is the brain child of CAidS’ dynamic chief functionary, Mr Piyush Gupta, and carries a purse of Rs. 100,000.
Dr Bishnu Dutta Paudel happened to be attending the Leadership Development Initiative at San Diego on the day the award was given out at the Annual Conference of the Indian Association of Palliative Care at Kolkata. His wife received the award on his behalf.
Watch an interview with Dr. Bishnu Dutta Paudel of Nepal, Dr. Eva Rossina Duarte of Guatemala, and Ms. Karen Ryan of Madison, WI, USA discussing the International Pain Policy Fellowship and the work that they are doing in their respective countries on our blog…
On some convenient day you go to an ISO-certified movie house in Trivandrum city and watch a movie. OK, you enjoy the movie, but can you by any stretch of imagination think of that act helping someone in pain?
Well, this is true!
- 1% of profits from ticket sales will go to Pallium India to help poor patients.
Thank you Mr Gireesh and all who made this possible! All of us at Pallium India are grateful to you.
Some have called Sri Padmanabha: “A cinema hall always ahead of its time” – WE AGREE!
New Indian Express report: Watch film; aid palliative care
A man on vacation fractures his knee cap. The hospital has no opioids to relieve his pain. A couple of days of agony later, he is stopped at the airport on his way home. They would not let him fly because he was in too much pain!
This happened to Dr Josh Ruxin, Columbia University development expert and founder of Rwanda Works, he writes about it in the New York Times asking about palliative care:
Last year in Mexico, just a couple of days into my vacation, I fractured my kneecap. In the emergency room, through pain so severe I found myself yelling at all helpful parties around me, particularly my wife, the doctors noted that they did not have painkillers to send home with me. “WHAT!?” I screamed. “No oxycodone, hydrocodone, nothing?” They explained that Mexico’s drug laws had grown so strict due to the actions of the narcotraficantes that pain meds were tough to come by (and only provided to patients who had been admitted to the hospital).
Two days later at the airport, the gate agent for American Airlines nearly refused to let me fly because she could see how much pain I was in and thought I might force the plane to make an emergency landing. After much haranguing I was finally allowed to board and made it back home for surgery and painkillers. But this incident compelled me to look at the state of pain management in developing countries.
It is clear that we live in a world where inequities of healthcare are paramount: there are millions dying of AIDS in Sub-Saharan Africa for want of drug therapy, while expensive surgeries for cancer, heart disease, or even to repair an injury like mine is out of reach for the world’s poor.
But what of the inexpensive palliative measures for those experiencing pain? I don’t have to dig very deep in my memory to pull up countless images of people I’ve witnessed in excruciating, seemingly never-ending agony. In Cambodia I came across a man who had lost half of his arm clearing mines, and hours later at a health clinic, he still hadn’t received so much as a Tylenol.
Commenting on the article, Alierias from Airville, Pennsylvania says:
“My heart bleeds for those who don’t have that option”
Dear Alierias, thank you for your compassion. Your heart is going to be very busy. It is going to have to bleed for an unbelievable 5 billions – 80% of the global population that have no access to effective pain relief.
What make it worse, are the opportunists who try to cash in on the pain, making sure that cheap effective opioids are not available, but that very expensive ones are.
Watch out for the “Morphine Manifesto” that global organizations are bringing out together on World Cancer Day, the 4th of February 2012, demanding access to simple inexpensive opioids before making expensive alternatives available.
In the meantime, dear Josh Ruxin, Alierias and all others who have that spark inside them demanding justice for those in pain, please keep the fire in your belly burning. We in developing countries need your help.
Thank you Meg O’Brien of Global Access to Pain Relief Initiative (GAPRI) for bringing this to our attention.
What kind of world do we we live in? Purely due to misapprehensions, ignorance and callousness, we force people into a living hell!
Artur, a man in pain from advanced cancer is denied pain relieving medicines and now lives with a bottle of liquor and a gun beneath his pillow!
When Artur, a former KGB agent in Ukraine, developed prostate cancer that metastasized to his bones, his pain grew so intense that he moved hours away from his family so they would not witness his suffering.
“I don’t want them to see me cry,” he said.
Lacking access to the opioid regimens that we in the United States depend on to treat the pain accompanying end-stage prostate cancer, Artur turned to what he had available: a bottle of liquor and a gun beneath his pillow.
The article in New England Journal of Medicine (N Engl J Med 2012; 366:199-201) by Dr Daniela Lamas MD and Lisa Rosenbaum MD lucidly brings out the “painful equities” pertaining to palliative care in developing countries.
It brings out some positives and negatives in the Indian scene too – the complicated narcotics control system in the country as well as its recent simplification in some states.
The article quotes Meg O’Brien, who directs the Global Access to Pain Relief Initiative (GAPRI),
“There isn’t a single government that couldn’t procure morphine if they wanted it,”
The article concludes with the statement,
“With the recent United Nations conference on noncommunicable disease, the world has opened its eyes to the growing burden of cancer.
Closing the gap in cancer care will depend on marshaling limited resources toward disease-specific approaches to treatment and prevention.
Pain, of course, has no pink ribbon and no celebrity survivor. But layering pain treatment onto any evolving health care system, no matter the disease, is as reachable a goal as any.”
Dates: March 17 – 18, 2012
It is intended for practicing palliative care physicians for updating their knowledge and skills with stress on recent developments in this field. The areas that would be covered during this course include,
- discussions on difficult pain management
- difficult clinical situations like delirium
- role and scope of palliative sedation
- dealing with our limitations
Other issues and areas that will be covered: organizing palliative care units, media advocacy and self learning thru e-resources. Faculty includes Dr Odette Spruyt, Dr Sushma Bhatnagar, Dr V Nandini , Dr Anjum Khan Joad, Dr Charu Singh and Dr M.R.Rajagopal. The proposed venue will be CanKids‘ Training Center at J-161 A, Gautam Nagar, Near Green Park Metro Station, New Delhi.
Registration fee for the Course is Rs.1,000. Registration is free for centers funded by JDF and IACA and for centers supported by Pallium India. Those interested may apply with a draft made out to “Pallium India” payable at Trivandrum and sent to:
Mr V.Jayprakashan, CEO, Pallium India
S10, Vrindavan Housing Colony, Opposite Traffic Police Station, Pattom, Trivandrum – 695 004, Kerala, India
Much of the activity of the last few months has been one of global connection among those in the palliative care field. One key question that has come up in meetings is “with all the small hospices and palliative care organizations struggling to survive around the world, how much can and should we support one another?”
The answer, we believe, is that work that any of us does in one corner of the world reverberates in a positive way in another.
We can and must reach out to one another. Just as you would not walk by a person who has fallen down on the side of the road, so too you wouldn’t turn your back on a cry for pain relief, even if that cry came from halfway around the world. Simply by extending your hand, you lift up many.
As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.
Don’t forget to sign the Morphine Manifesto!
posted by palliumindia in Newsletter