CANCER MANAGEMENT
58 CANCER CONTROL 2015
multidisciplinary approach and welcomed volunteers as
members.
Over the next few years, in the latter part of 1990s, several
new palliative care initiatives were started, such as the
Guwahati Pain and Palliative Care Society in Assam, the
Jivodaya Hospice in Chennai, Cansupport in Delhi, the
Lakshmi Palliative Care Trust in Chennai and the
Karunasraya Hospice in Bangalore. Some regional cancer
centres like Trivandrum, Bangalore and Delhi which already
had pain management programmes, also included palliative
care in their service. Though every year a few centres were
added, the growth was limited considering the enormity of
Indian population.
At this time, access to opioids was not easy. Possibly as a
response to the global war on drugs, India had formed, in
1985, the Narcotic Drugs and Psychotropic Substances
(NDPS) Act (4). This draconian legislation brought in stiff
penalties which could even be applicable for minor clerical
errors and gradually pharmacies stopped stocking morphine.
This Act also mandated several different licenses, typically
four to five, all of which needed to be valid at the same time.
Typically again, these licenses had to be issued with the
concurrence of several Government departments making
the system next to non-functional. In the 13 years which
followed the enactment of the NDPS Act, morphine
consumption in the country fell by an alarming 92% - from
around 600kg to a mere 48kg. In 1997, India's per capita
consumption of morphine ranked among the lowest in the
world (113th of 131 countries). During the same period,
global consumption of morphine had increased by 437% (5).
In 1995, Mr David Joranson, the Founder Director of Pain
and Policy Studies Group in Madison Wisconsin, another
WHO Collaborating Centre, entered into a partnership with
palliative care pioneers in India. They analyzed the NDPS
Act, identified barriers and submitted a proposal to the
Government of India for simplification. Health as well as
control of opioid medicines are both "state subjects" in
India's federal system of governance; it was necessary for
each state to act independently (6).
In 1998, the pharmacologist Ravindra Ghooi approached
the Delhi High Court seeking access to morphine for his
mother in pain from cancer. The High Court passed an order
expressing sympathy for the cause and asking Delhi
Government to take prompt action. Following this and
representations from the Pain and Policy Study Group, the
Government of India prepared a model rule for the
modification of existing state regulations and asked all states
to change their regulations accordingly. By India's
constitution, the state government is not obliged to follow
the central government in this matter. Most states did
nothing. The collaborators, namely the Pain and Policy
Studies Group and Indian palliative care activists worked
together through state governments. Eighteen workshops
were organized in various states resulting in many of them
changing the state regulations following the central
government instruction.
Of these, Kerala showed a remarkable improvement in
access to opioids during the subsequent years. Some states
like Tamil Nadu, Karnataka and Delhi showed a modest
improvement while in most other states the change was
minimal. It appears that wherever there was existing
palliative care activity resulting in a demand for pain relief
and for morphine, the amendment of the state rules did
improve the situation. It also became very clear that without
such activity, the regulatory reforms make no impact.
Since the beginning of the Pain and Palliative Care Society
in 1993, the community's involvement in palliative care was
steadily growing in Kerala. By the turn of the century, this
was given structure and growth with the name
"Neighborhood Networks in Palliative Care" (NNPC) (7). An
international conference on community participation in
palliative care gave great visibility to NNPC, the media were
supportive, public interest grew and truly the people of
Kerala embraced palliative care. Trained volunteers are
involved in palliative care, organizing palliative care services,
doing nursing chores, educating families in care and in
spreading awareness. Questions have been raised about the
quality of services that such community-based services can
give (8), but the system has indeed succeeded in providing a
link between the patient and medical institutions (9), adding
the "meso" element of the social capital that is being eroded
in much of the world (10).
In 2003, the charitable organization called Pallium India
was created to improve access to palliative care outside
Kerala. Since then, palliative care centres have been
established in 11 states where until then practically no such
The organization was started with
practically no resources and was done
purely based on volunteerism. As more
volunteers got involved, PPCS grew as
an out-patient service later adding on a
home visit programme as the need
became apparent