Annex 1: Summary of the Committee's Visit
to the USA and Canada
2nd - 6th April 2000
USA and CANADA
Monday 3rd April 2000
Human Genome Sciences Inc, Washington
Founded in 1992, Human Genome Sciences (HGS) is a
biopharmaceutical company which aims to discover, develop, manufacture
and market new gene- and protein-based drugs. HGS is a pioneer
in genomics, the systematic study of all genes of an organism,
and a pioneer in converting genomic knowledge into drugs to treat
and cure disease. HGS was first to discover a number of human
genes and to create an integrated, genomics-based drug discovery
and development capability.
Meeting with Dr William Haseltine, Chairman and Chief
Executive of Human Genome Sciences Inc.
Topics discussed:
The importance of a basic understanding of cancer,
especially genetics, for the introduction of prevention and treatment
strategies; the importance of early detection through screening;
the importance and promise of immunotherapeutic approaches to
cancer treatment; the huge contribution made by the UK to the
global effort to combat cancer; the difficulties in keeping patients
alive while they receive treatment; the potential advantage of
the NHS in recruiting to clinical trials; the value of the HGP
in understanding disease and treatment; patenting the human genome.
The National Cancer Institute, Bethseda, Maryland
The National Cancer Institute (NCI) is one of the
25 institutes of the National Institutes of Health (NIH). The
NCI, established under the National Cancer Act of 1937, is the
Federal Government's principal agency for cancer research and
training. The National Cancer Act of 1971 broadened the scope
and responsibilities of the NCI and created the National Cancer
Program. The NCI gets its funding direct from Congressional appropriations.
The NCI co-ordinates the National Cancer Program, which conducts
and supports research, training, health information dissemination,
and other programs with respect to the cause, diagnosis, prevention,
and treatment of cancer, rehabilitation from cancer, and the continuing
care of cancer patients and the families of cancer patients. The
NCI is the world's largest cancer research enterprise with a budget
for 2000 of over $3 billion. The vast proportion of the NCI's
money is given in direct grants to universities although the NCI
also runs a substantial intramural programme. The NCI's programme
was pursued through eight divisions covering basic and clinical
research on the nature of cancer, public health, prevention, detection,
treatment and rehabilitation.
Meeting with Dr Joe Harford, Associate Director for
Special Projects and Chief of Staff, and Dr Frederico Welsch.
Topics discussed:
Cancer incidence in the USA and the associated medical
costs; the impact on the incidence of cancer of the ageing population;
the importance of tobacco as the leading preventable cause of
cancer in the US; the low level of participation (5 per cent)
of adult cancer patients in clinical trials as a major obstacle
to progress; the importance of the rôle of patient advocacy
groups in setting the agenda for cancer research in the US; the
importance of pooling of federal resources devoted to combatting
cancer (the pool being NCI) in terms of prioritisation and deployment
of resources around the nation; the importance of the HGP and
the discovery of the genome sequence as a major part, but only
part, of NCI's strategy to combat cancer.
PhRMA and BIO, Washington DC
PhRMA (Pharmaceutical Research and Manufacturers
of America) membership represents approximately 100 US companies
that have a primary commitment to pharmaceutical research. It
is the US equivalent of the UK's Association of the British Pharmaceutical
Industry (ABPI). The Biotechnology Industry Organization (BIO)
represents the interests of the biotechnology companies and is
broadly similar to the UK's BioIndustry Association (BIA).
Meeting with Dr Bert Spilker, Director General, PhRMA;
Mr Michael Warner, BIO; Mr Alan Goldhammer, Ms Sarah Radcliffe,
Ms Angela Copack, PhRMA.
Topics discussed:
The good co-ordination, for the most part informal
and therefore flexible, between the Government, industry and charities
in cancer research in the USA; concerns that the creation of NICE
had created a fourth and unnecessary hurdle for drug companies
to overcome prior to selling a new drug in the UK; the need for
collaboration in cancer research because of the complex nature
of the problem; the Orphan Drug Act which gives new drugs seven
years of market exclusivity, as well as tax incentives for rarer
diseases; the low participation in clinical trials in the US which
was a major barrier to beating the cancer challenge; the need
for NCI to undertake more translational research; MRC trials not
meeting the ICH Good Clinical Practice Protocols.
National Coalition for Cancer Research
Established in 1986, the National Coalition for Cancer
Research (NCCR) is a non-profit organisation comprised of national
organisations dedicated to the eradication of cancer through a
vigorous public and privately-supported research effort. The NCCR
focusses its public education efforts on public policies that
support and foster the US position as the world leader in medical
research and development, and innovation. The coalition comprise
twenty-six partner organisations involved in cancer research and
discovery, cancer patients.
Meeting with Ms Marguerite Donuhue Baxter, Chief
Executive, NCCR.
Topics discussed:
The dual rôle of the NCCR to educate the public
and policy makers on the importance of cancer and cancer research
and to lobby for increased federal funding for cancer research;
the importance of NCI in ensuring that the US cancer effort is
focussed; NCI's priorities, in particular, the low priority given
to prevention; the importance of the rôle of not-for-profit
organisations in the US, in providing seed money to get a research
concept going and in education; the dominance of industry funding
which exceeds federal support for biomedical research; the need
to develop tobacco legislation and Congressional attitudes towards
tobacco; the need to improve clinical research and in particular
to encourage more cancer patients to participate in trials.
Tuesday 4th April 2000
The American Cancer Society
The American Cancer Society (ACS) is the largest
voluntary sector funder of cancer research in the US with an annual
budget of $600 million, achieved through fund raising. It has
a staff of 50. It spends around $100 million per annum on research
and also provides community support services and plays an advocacy
rôle.
Topics discussed:
The need for more funding, particularly to concentrate
on the medically under-served; the importance of anti-tobacco
legislation; the need to enhance clinical trials and access to
cutting-edge techniques; the poor survival rates especially among
the ethnic minorities and people in rural areas; the importance
of early detection and prevention in increasing survival rates;
the possibility of a new US national cancer act to include the
possibility of the creation of a "cancer czar"; the
large numbers of people still not receiving adequate medical attention.
Senator Connie Mack and Congresswoman DeLauro
Senator Connie Mack is a well-known champion for
cancer research in the USA. He has a track record in gathering
bi-partisan support for cancer research in increased appropriations,
cancer clinical trials, pain management, and Medicare. He was
a founder of the Senate Cancer Coalition to heighten awareness
of cancer research, early detection programs, improving cancer
prevention and exploring innovative treatment options. He had
been involved in pushing through the Senate resolution to double
the budget of the NIH over a five year period. Representative
Rosa DeLauro is a survivor of ovarian cancer, and an active supporter
of the National Coalition for Cancer Research and the entire cancer
community. As a member of the House Appropriation's and Agriculture
Subcommittees, she has led Congressional efforts to increase the
federal commitment to cancer research and the National Cancer
Institute. She is also a member of the House Working Group on
Cancer.
Topics discussed:
The strides that had been made in the understanding
and treatment of cancer; the importance of funding cancer research
to meet the challenges of cancer and an ageing population; the
problem of access to new medical treatments by people without
insurance; tobacco as a factor in the fight against cancer; the
forthcoming updating of the National Cancer Act and the review
of the political commitment to the NCI; the training of clinical
researchers and in particular the rôle of universities;
the interaction of NCI with other federal organisations involved
in funding cancer research such as the Department of Defense;
the rôle of the FDA in drug approvals.
Wednesday 5th April 2000
National Cancer Policy Board
The National Cancer Policy Board is part of the Institute
of Medicine which in turn is part of the National Academy of Sciences
complex (the US equivalent to the Royal Society.) Its rôle
is to provide independent advice to the Government and other organisations
on topical issues aimed at advancing the US effort against cancer.
Meeting with Mr Bob Cook-Deegan, Chairman, National
Cancer Policy Board.
Topics discussed:
The history of the NCI and the impacts of Presidents
Kennedy and Nixon; the political popularity of medical research
in the USA which is largely driven by the advocacy community;
the recognition of the link between scientific discoveries and
cures; access to treatment, which is not as bad for cancer sufferers
as it is for other diseases because cancer tends to affect the
elderly who are covered by Medicare; the need for action on tobacco
consumption.
Thursday 6th April 2000
University of Toronto
The University of Toronto hosts a large Faculty of
Medicine. Founded 150 years ago the Faculty offers 60 programmes,
places for 9,000 students and 4,000 staff. Funding is received
from the national and provincial agencies, which amounts to over
$200 million annually. The University taps into clinical research
through access to a 5,000 bed patient population through the integrated
network of 13 affiliated teaching hospitals. Major research sponsors
range from the local medical industries to many pharmaceutical
multi-nationals.
Meeting with Dr Cecil Yip, Vice Dean of Research,
Faculty of Medicine, University of Toronto.
Topics discussed:
Cancer as a major cause of mortality in Canada; national
efforts to combat cancer through fundamental research, clinical
trials, healthcare delivery and research into public health and
the environment; opportunities arising from advances in genomics
for improved cancer prevention and treatment; success as a result
of close co-operation between basic research scientists and clinical
researchers; Canada's National Cancer Institute (CNCI) which is
a charitable organisation and has no intramural research programme;
the value of international collaboration; the likely benefits
from the increased focus on interdisciplinary research; the importance
of encouraging the pharmaceutical industry to invest in research
and development in Canada.
Ontario Cancer Institute, Princess Margaret Hospital,
Toronto
Princess Margaret Hospital (PMH), and its research
arm, the Ontario Cancer Institute, is considered one of the top
comprehensive cancer centres in the world. Clinical and research
staff at PMH are amongst the world's leading experts in oncology,
with specialties including surgical oncology, bone marrow transplantation,
chemotherapy, radiation oncology, psycho-social oncology, haematology,
medical imaging and radiation therapy. The radiation therapy facility
at PMH is the second largest in North America, treating over 6,000
cancer patients with radiation therapy each year on 17 radiation
machines.
The Committee met Dr Chris Page, Director of Ontario
Cancer Institute, and several of his colleagues and discussed
some of the latest techniques in cancer research.
Mount Sinai Hospital, Toronto
The Canada's National Cancer Institute (CNCI), a
charitable organisation, has no intramural research programme.
It funds the best research proposals which are submitted. The
CNCI provides support for cancer research and related programs
undertaken at Canadian universities, hospitals and other research
institutions. It was formed in 1947 and its mandate is to co-ordinate
and correlate the efforts of individuals and organised bodies
with a view to reducing the morbidity and mortality from cancer.
It fulfils this rôle by supporting clinical and laboratory-based
research activities and research personnel, as well as through
sponsoring workshops and by facilitating cancer control planning.
The Samuel Lunenfeld Research Institute, Mount Sinai
Hospital, is widely recognised as one of Canada's leading research
facilities in biomedical research and in training young investigators.
Its facilities include 100, 000 square feet of laboratory spac.
It has an annual budget of over $25 million.
Meeting with Dr Bob Phillips, CNCI and Dr Tony Pawson
of the Samuel Lunenfeld Research Institute, Mount Sinai Hospital.
Topics discussed:
The need to update the Canadian National Cancer Strategy;
Government resistance to pressure to create a National Cancer
Institute in Canada on the grounds that if one were created for
cancer, every other disease-specific lobby group would start to
make similar demands; the benefits for the CNCI in remaining independent;
public support for additional resources to be devoted to research
into alternative therapies; the rôle of the voluntary sector
in funding around a third of cancer research in Canada; the low
adult participation in clinical trials, limiting the number of
research projects that could be undertaken; the process of genetic
mutation in causing cancer; gene chip technology in detecting
cancer genes; the poor state of research infrastructure in the
UK which encouraged researchers to move to Canada where facilities
were much better.
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