About 1,300
children and teenagers are diagnosed with cancer
in Canada each year -- the commonest cause of
disease-related death in our children.
Happily, 70 per cent of those children will be
cured and, with continued research, by the year
2010, as many as 85 per cent of such victims will
be cured. So why is our federal government gutting
research funding into childhood cancer?
Canada's national contribution to improving the
lives of children with cancer began in 1995 when
the Canadian Childhood Cancer Surveillance and
Control Program began operating under the
direction of Health Canada's cancer bureau.
From the beginning, this program, which has
been overseen by a committee drawn from children's
cancer centres across the country, as well as
Health Canada, has had four main research
components.
The first focuses on the causes of childhood
cancer. It aims to establish a national data bank
of childhood cancer cases matched with detailed
information on possible risk factors.
The second moves to create a network of tissue
banks to collect and store tissue from newly
diagnosed children, as well as blood samples from
their parents, to allow analysis of possible links
between genetic characteristics of the cancers and
the families affected.
The third research component establishes a
clinical database that includes information on
demographics, type and extent of the cancer,
treatment and outcome.
The fourth, a continuing study of "late
effects," is designed to assess the long-term
psychosocial and physical effects of cancer and
its treatment on children, adolescents, and young
adults who have survived at least five years from
diagnosis. Some such "late effects" are known to
occur in most cancer survivors.
This ambitious research program has proven
successful, as evidenced by the sharing of new
knowledge at numerous national and international
conferences and the preparation of reports for
publication in reputable medical journals.
Despite its stated support for the program, the
federal government has progressively shrunk the
amount of funding it provides to collect vital
information across the country. What began as a
collection budget of $1-million a year has been
reduced now to zero.
This has meant that the research mandate has
had to be scaled back significantly. Research into
causes of childhood cancer has been restricted to
two provinces (Quebec and British Columbia) and
two diseases (leukemia and brain tumours) rather
than looking broadly at evidence from across
Canada. As well, the intended network of tissue
banks has never been established (despite a pilot
study demonstrating that it was both feasible and
cost effective). The "late effects" study of
cancer survivors has so far collected information
on more than 2,000 Canadian survivors, but the
continuing acquisition of information has had to
be halted, ending ongoing evaluation of these
important health hazards.
With the original funding, research priority
was given to the establishment of the clinical
database for the surveillance of treatment and
outcomes. This is potentially the richest and most
informative source of information on cancer in
Canada's children and youth; a resource unique to
this country that will lead to advances in care
and changes in health policy. It has already
generated a wide-ranging report on more than 5,000
children that is near completion.
Now, however, the lack of funding means the
collection of this information is also stalled,
threatening even this program.
The Canadian Council of Pediatric
Hematology-Oncology Directors (a consortium of
leaders of all of the childhood cancer treatment
centres across the country) has expressed its
concern at the increasing threat to the survival
of this program and has encouraged Health Canada
to restore adequate financial support.
Everyone, it seems, agrees this is a program
worth saving. Health Minister Anne McLellan lauded
the program last fall. An external appraisal
recommended an annual operating budget of
$1.5-million. In 1999, Canada's auditor-general
expressed his support for the program. It also has
the unqualified support of one of the groups most
affected by its research: the parents of children
with cancer.
Despite all this, however, little material
support has been forthcoming from the federal
government. At a time when an international survey
ranked Canadian scientists first overall in terms
of impact on cancer, it is a national scandal that
Health Canada seems prepared to allow this
childhood cancer research initiative to fade into
oblivion.
Dr. Ronald Barr, professor of pediatrics,
pathology and medicine at McMaster University, and
Dr. Mark Greenberg, professor of pediatrics and
surgery at University of Toronto, are co-chairs of
the Canadian Childhood Cancer Surveillance and
Control Program.