UICC World Cancer Congress 2006

Objectives: 1. To identify common barriers to pain relief in most of the world and to identify the relevance of access to opioids in that context. 2. To recognize regulatory barriers as a major hindrance to access to pain relief. 3. To understand how the regulatory problems were addressed in India and the successes and problems encountered. 4. To recognize how the strategy was reviewed and modified to jointly address more than one major barrier concurrently. Methods: Despite pain relief being recognized as an integral part of cancer care since 1991, about two million people with cancer continue to be in needless pain in India. Pain relief reaches less than 1% of the needy. Stringent narcotic regulations of 1985 caused a steady reduction in morphine consumption, till it reached an all-time low in 1998. Consequently a whole generation of physicians got trained without exposure to proper evaluation and management of pain, including appropriate use of opioids. Fear of respiratory depression among physicians and fear of addiction among administrators, the public and medical professionals became the order of the day. Efforts by non-government organizations (NGOs) achieved slow progress.

The WHO Collaborating Center (WHOCC) at Madison-Wisconsin and palliative care workers in India have been collaborating to address the problem since 19951. Initial efforts of the WHOCC at identifying key officials in the central government and interacting with them at a personal level led to the government acting on its recommendation and asking all state governments to simplify and amend their narcotic regulations. A series of workshops was undertaken at national and state level where administrators and palliative care professionals had round-table discussions. These helped to allay misapprehensions and to develop plans of action. Results: Our interventions had the following immediate positive results: 1. Narcotic regulations were simplified in 13 states (out of 28) in India. 2. Government action led to uninterrupted supply of morphine from the government factory (the only source of morphine powder) to the manufacturers of tablets or other formulations of morphine. 3. Improved awareness of officials made it easier for institutions to obtain the required licenses even in states where the narcotic regulations have not been amended. 4. Since 1998, morphine consumption in the country has gone up.

A study undertaken in Calicut, Kerala as part of this project showed that 1723 patients over a two year period used oral morphine at home with no evidence of misuse or diversion to illicit channels2. The procedure involved in storing and documenting morphine use and maintenance of stock register has come to be generally accepted standard practice. Patients (or relatives when the patient is too sick to travel) now can collect two weeks' supply of oral morphine from palliative care centers for use at home. In the tiny state of Kerala in the south-west coast of India, about 75 palliative care facilities store and dispense oral morphine.

But the success is partial. Despite sustained efforts by palliative care workers and the central government, 15 Indian states are yet to amend and simplify their narcotic regulations. And unfortunately, in many of the states which amended the narcotic regulations, opioid availability has not improved. Why did our efforts succeed in Kerala, and fail in many states?

We realize that simplification of narcotic regulations has to go hand in hand with physician education and advocacy. To make any further progress, we realize that we have to improve education of professionals on principles of pain relief and palliative care, and simultaneously work for institution of standard operating procedures for implementation of simplified narcotic regulations. Current efforts are directed at overcoming these barriers too. A pilot program funded by National Cancer Institute, assisted by WHOCC and administered by the NGO Pallium India, aims at this multi-pronged strategy. This program gives take-off grant to three regional cancer centers which had no palliative care facility. The grant covers the training of a physician and a nurse and assists at providing remuneration for these personnel for a period of two years. The training in all three of these regional cancer centers have been completed now and the palliative care services are in the process of taking off. The program also makes provision for sensitization of professionals and public and for working with government and other administrators to address regulatory and policy barriers.

Another positive development is the appointment of a task force by Government of India for formulating strategy for palliative care as part of the National Cancer Control Program in the country's next five year plan starting in 2007. The task force has developed and recommended a strategy for development of palliative care services in all regional cancer centers as well as in 100 other cancer treatment facilities, for improving opioid availability, for establishing regional training centers in palliative care with the support of NGOs and for improving education of professionals.

So far in India, development of palliative care has been mostly NGO-driven. However, we have learnt that NGOs must work with governments so that regulatory barriers can be overcome and so that pain relief and palliative care get woven into the fabric of routine health care.