February 2013 Newsletter

2013 February 28

Dear Friends,

It feels so good to start with some good news.

We hear from an authoritative source that the proposed amendment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India will be tabled before the Indian Parliament during the budget session which convened on 21 February 2013.

This will indeed be a giant step forward, easing several of the barriers to opioid access. If both houses of the Parliament does pass the amendment, it will be the culmination of 18 years of hard work by a lot of people in India and abroad.

Hopefully, we shall have good news for you in the next newsletter.

A “Thank You” Note

“When our father was diagnosed with a condition which did not have any adequate treatment, we were really devastated. The anguish, helplessness, grief and to some extent, the guilt that we experienced knew no bounds. We were fervently searching for options which would keep him in comfort and make his last few days with us reasonably pleasant”

… thus went Dr Nandakumar’s letter. He continued to say,

“Your systematic and stepwise management was very effective. We understood that when combined with scientific know-how, skill and experience, how much a person and his family benefit from thoughtfulness, compassion and a humane approach to a situation. No words can express our gratitude….”

People working in palliative care are not unfamiliar with this kind of encomium. But though palliative care can make such obvious difference to a person and his family, it still does not reach the large number of people who need it. Or it reaches them too late, resulting in a lot of needless suffering.

We need advocacy. The more the awareness about palliative care, the less the burden of disease-related suffering.

Strong Statement from the UN Special Rapporteur on Torture

Pallium India had the privilege of being a participant at an expert meeting on “Torture and ill-treatment in healthcare settings” at the Center for Human Rights and Humanitarian Law, American University in Washington, DC on 13-14 December 2012.

The Rapporteur’s report has come out now, with strong wording on access to pain relief. Here is the relevant part of the report:

C. Denial of pain treatment

51. In 2012, WHO estimated that 5.5 billion people live in countries with low or no access to controlled medicines and have no or insufficient access to treatment for moderate to severe pain.53 Despite the repeated reminders made by the Commission on Narcotic Drugs to States of their obligations,54 83 per cent of the world population has either no or inadequate access to treatment for moderate to severe pain. Tens of millions of people, including around 5.5 million terminal cancer patients and 1 million end-stage HIV/AIDS patients, suffer from moderate to severe pain each year without treatment.

52. Many countries fail to make adequate arrangements for the supply of these medications.56 Low- and middle-income countries account for 6 per cent of morphine use worldwide while having about half of all cancer patients and 95 per cent of all new HIV infections.57 Thirty-two countries in Africa have almost no morphine available at all.58 In the United States, over a third of patients are not adequately treated for pain.59 In France, a study found that doctors underestimated pain in over half of their AIDS patients.60 In India, more than half of the country‟s regional cancer centres do not have morphine or doctors trained in using it. This is despite the fact that 70 per cent or more of their patients have advanced cancer and are likely to require pain treatment.61

53. Although relatively inexpensive and highly effective medications such as morphine and other narcotic drugs have proven essential “for the relief of pain and suffering”62, these types of medications are virtually unavailable in more than 150 countries.63 Obstacles that unnecessarily impede access to morphine and adversely affect its availability include overly restrictive drug control regulations64 and, more frequently, misinterpretation of otherwise appropriate regulations;65 deficiency in drug supply management; inadequate infrastructure;66 lack of prioritization of palliative care67; ingrained prejudices about using opioids for medical purposes;68 and the absence of pain management policies or guidelines for practitioners.69

Applicability of torture and ill-treatment framework

54. Generally, denial of pain treatment involves acts of omission rather than commission,70 and results from neglect and poor Government policies, rather than from an intention to inflict suffering. However, not every case where a person suffers from severe pain but has no access to appropriate treatment will constitute cruel, inhuman, or degrading treatment or punishment. This will only be the case when the suffering is severe and meets the minimum threshold under the prohibition against torture and ill-treatment; when the State is, or should be, aware of the suffering, including when no appropriate treatment was offered; and when the Government failed to take all reasonable steps71 to protect individuals‟ physical and mental integrity.72

55. Ensuring the availability and accessibility of medications included in the WHO Model List of Essential Medicines is not just a reasonable step but a legal obligation under the Single Convention on Narcotic Drugs, 1961. When the failure of States to take positive steps, or to refrain from interfering with health-care services, condemns patients to unnecessary suffering from pain, States not only fall foul of the right to health but may also violate an affirmative obligation under the prohibition of torture and ill-treatment (A/HRC/10/44 and Corr.1, para. 72).

56. In a statement issued jointly with the Special Rapporteur on the right to health, the Special Rapporteur on the question of torture reaffirmed that the failure to ensure access to controlled medicines for the relief of pain and suffering threatens fundamental rights to health and to protection against cruel, inhuman and degrading treatment. Governments must guarantee essential medicines – which include, among others, opioid analgesics – as part of their minimum core obligations under the right to health, and take measures to protect people under their jurisdiction from inhuman and degrading treatment.73

Thank You: Dr Jim Cleary & Dr Stephen Connor for the “Delhi Tour”

Stephen Connor

Jim Cleary

Dr Jim Cleary, Director of WHOCC, Madison-Wisconsin, and Dr Stephen Connor, senior executive of Worldwide Palliative Care Alliance (WPCA) worked with us on visits to Government officials at Delhi. We met Shri Desiraju, the new Health Secretary, Dr Jagdish Prasad, the Director General of Health Services and Dr Sudhir Gupta, the Deputy Director General of Health Services who were readily sympathetic to the needs presented by us. And Dr Srivastava, the Secretary of the Medical Council of India as well as Dr. Josephine Littleflower, the nursing officer at the ministry of Health and Family Welfare agreed to do all they can to include palliative care in undergraduate medical and nursing curricula.

Jim and Stephen, we want you to know how grateful we are. Two days of your life is precious; there is no way anyone can give them back to you. Thank you very much.

Another Award to Pallium India

In observance of his 31st death anniversary, the V. K. Velayudhan Foundation confers an award for “Excellence in Palliative Health Care” to Pallium India. The award carries a purse of Rs. 50,000.

V. K. Velayudhan was a great social reformer from the last century – a major force behind the Royal decision to open the doors of temples to all Hindus without discrimination in the name of caste. The Father of the Nation, Mahatma Gandhi had hailed it as an example for the whole country to follow. Pallium India is indeed proud to get an award in the name of such a great social luminary.

The award will be handed over at the Foundation’s office at Vanchiyoor on 25 February 2013 at 5.30 PM.

More problems with opioid abuse?

The UK’s advisory council on misuse of drugs (ACMD) has recommended tighter control on the use of Tramadol, concerned with the rising number of deaths with its abuse.

BBC report: Tighter controls on painkiller tramadol needed – ACMD

Needless to say, while we promote rational and essential use of opioids for pain relief, we need to remember the principle of balance and do all in our power to avoid abuse. This is especially relevant when we use opioids like tramadol for chronic non-cancer pain.

The least we can do is to warn our patients about the side-effects like tachycardia, hypertension and seizures which can endanger life, if in a desperate attempt at relieving pain, overdoses are taken.

Injection morphine available: Almost free!

Mr Jayasis Gun, writing on behalf of “Rusan Healthcare”, informs us that the firm has a large quantity of Injection morphine, approaching expiry date in June and August 2013. The firm is willing to sell it at a nominal price of less than One Rupee (plust taxes) per ampoule to anyone who sends them an order accompanied by the required licenses. What a shame it will be if the medicines are destroyed on expiry date, while such a huge pain burden exists in the country!

Mr Jayasis Gun can be contacted at
Tel (Direct):022-26392247/24
jayasisgun@gmail.com
j.gun@rhcpl.com

Thank You Jennifer!

Globegazette.com reports on Jennifer Schmitz Nobbs, a nurse from Iowa, USA who attended a three week cultural immersion course with Pallium India in Trivandrum. Please read:

Nurse returns from three-week trip to India Nurse returns from three-week trip to India

NORA SPRINGS — Jennifer Nobbs, a nurse at Mercy Medical Center-North Iowa, recently returned from a three-week trip to India where she went along on home visits to impoverished patients.

“They have very limited resources,” said the 38-year-old Nora Springs resident. “It’s amazing what they do with so little.”

She said the trip also made her realize “how fortunate we are to have electricity in our houses and nice, comfy beds.”

Nobbs graduated in December with a bachelor’s degree in nursing from the University of Iowa.

Read more here…

Thanks to Jennifer, the proceeds from a Home Business Expo and Craft Fair in Nora Springs on Saturday the 23rd of February 2013, will go to support the patients seen by Pallium India.

Jennifer and friends, it was good to have you with us in Trivandrum. We know that more of your group are planning fund-raising activities to help our patients. Thank you.

IAPC conference at Bangalore 08-10 February 2013.

Conferences Do Not have to Be Luxurious. But They Have to Be Effective

Palliative care activists from all over India and their friends from other countries got together again for their annual conference at Bangalore from the 8th to the 10th of February 2013. Dr Linge Gowda and team put up an excellent program.

It was not the typical medical conference in a five star hotel, but most appropriately, not-too-luxurious, but comfortable and effective. Medical conferences, too often, tend to be sort of festivals, but palliative care conferences in India have continued to provide an affordable forum for exchange of experiences and for learning. And in this, the Bangalore conference was a total success. Kudos to the organizers.

Talking about conferences and palliative care, it is heartening that Indian Association of Palliative Care is recommending moderation in “facilities” during conferences.

Congratulations to the President Dr Nagesh Simha and the secretary, Dr Anil Paleri and colleagues. And congratulations to Dr Abhijit Dam and colleagues who have prepared a draft which will be put up in IAPC website for your comments.

The Joy of Palliative Care

Arunangshu Ghoshal & Anuja DamaniSee the sheer joy on these two young faces!

It was good to meet up with them during the annual conference of Indian Association of Palliative Care at Bangalore. They are Dr Arunangshu Ghoshal and Dr.Anuja Damani, the first two doctors to take up the specialist course of M.D in Palliative Medicine. They form such an important part of history of Palliative Medicine.

Congratulations, Arunangshu and Anuja and congratulations, Professor Maryanne Muckaden, head of Palliative Medicine at Tata Memorial Hospital, Mumbai.

Workshop on Community Participation in Palliative Care at Ernakulam

The Institute of Palliative Medicine (WHO Collaborating Centre) organized a two day international workshop on Community Participation in palliative care at District Hospital, Ernakulam. Participants came from several countries in the developed and developing world.
It was good to see Dr Jan Stjernswaard (former head of cancer and palliative care at WHO, Geneva) and to listen to his inimitable presentation.

PARTING SHOT

Are you concerned that the World Health Organization’s definition of palliative care is too long? Here is Dr Jan Stjernsward’s own crisp definiton:

Palliative care relieves suffering and improves quality of life of both the living and the dying.

Nothing could be shorter and crisper!

Why Not Donate? Every little bit helps.

  • $ 5 will pay for Medicines for a week
  • $ 20 = Medicines for a month
  • $ 80 = Schooling support for one child/year
  • $ 500 = Vocational rehabilitation for a family

Visit palliumindia.org/donate

Don’t forget to sign the Morphine Manifesto!

One Response
  1. Karina Schoultz permalink
    March 24, 2013

    I am so grateful that I was able to spend a few weeks in Trivandrum with you all. Thank you for being so welcoming and warm. The organization is even more incredible than I had expected–mostly due to the people, who have such big hearts, dedication, and talent. It really is inspiring to see how much you all do with so little. What a spirited and resourceful group!

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