Hemophilia
Ontario’s
Marathon Man
Paul
McNeil - The Marathon Man
On Sunday, October
15, 2000, Paul McNeil will be running the Canadian International
Marathon in Toronto on behalf of Hemophilia Ontario, thanks to
the generous support of Genetics Institute-Wyeth Ayerst Canada
Inc.
Paul is 28 years
old and has severe Factor IX hemophilia. He lives in Sudbury and
works as a Registered Nurse at the Sudbury Regional Hospital.
He also works part-time for Hemophilia Ontario as the Regional
Service Coordinator for northeast Ontario. Due to bleeding complications
into his elbow joint, Paul had elbow replacement surgery in 1998.
With all of these challenges Paul decided to do something different
— marathon running! "I never thought I’d be able
to run a marathon, and now I find that I am able to, so why not!"
Paul’s motivation
for completing the marathon is partly because he was told by many
that he, and people with hemophilia, couldn’t do it - that
the rigors of training and complications from joint bleeds into
his hips, knees or ankles just did not lend themselves to a hemophiliac’s
life. Paul has proved them all wrong.
But achieving this
was not easy. Paul didn’t start off running marathons - he
started off slowly, building his muscles gradually, treating himself
regularly, to where he can now run a marathon. He was determined.
He ran 6 days a week, running 7-8 km each time with 1 long run
of 15-20 km per week. He has increased this monthly until he reached
his goal of 30km. He also weight trains for his arms and legs
3 times a week and cross trains (biking and swimming) at least
once a week. Paul follows a diet that is low in fat and high in
carbohydrates and protein. He eats a lot of fruit, vegetables,
and drinks 6 litres of water a day. To prepare himself for training,
Paul read everything he could get his hands on to get ideas that
would work for him.
And he leads an active
life. Besides running, he trains with his dog Cairo. Paul’s
other hobbies include canoeing, snow shoeing, music (he plays
and teaches piano), reading and biking. He also co-leads Hemophilia
Ontario’s annual Youth Wilderness Expedition.
Advances in medicine
have made a profound contribution to Paul’s quality of life,
enabling him to contemplate and realistically take on the challenges
of a marathon run.
Paul sees this as
an opportunity to serve as a role model for other people with
hemophilia, particularly younger people. "Physical activity
is critical for people with hemophilia. With prophylaxis and home
infusion, young people with hemophilia do not need to live severely
restricted lives. They can participate in most mainstream social
and physical activities and ways can be found to creatively
participate, even with some restrictions. The other thing that
I’ve found through my running is that it’s helped break
some of the isolation I felt when I was younger", Paul said.
But he also emphasizes
that running is not for every hemophiliac. "I think that
anyone who’s prepared to undertake something like this should
speak to their doctor first to make sure that it makes sense".
Paul believes that what he’s doing is not extraordinary —
he’s leading a normal everyday life, with few impediments,
despite his hemophilia. "For high achieving individuals,
hemophilia is not a roadblock to achieving one’s goals",
he concluded.
All media materials
relating to Paul McNeil’s participation in the marathon are
available at www.hemophilia.on.ca.
Contact:
Communications
MECA
Diana Spremo
905-693-1860
or
Carol
Levine,
APR
514-288-8500 / 1-888-764-6322
514-867-0256 (cellular)
Hemophilia
Fact Sheet
- Hemophilia is a rare, inherited
blood clotting disorder that results from a deficiency in functional
factor VIII or factor IX.A1
- Hemophilia A, the most common
form of the disorder, is due to a deficiency in factor VIII.
This form of hemophilia affects approximately 1900 Canadians.
Hemophilia B is caused by a factor IX deficiency and affects
approximately 500 individuals in Canada.
- Both forms of hemophilia are characterized
by spontaneous hemorrhages or prolonged bleeding, typically
into joints and soft tissue.C1
- Despite knowledge of the existence
of hemophilia since biblical times, effective treatments for
the disease were not available until early this century.D1
- A true medical breakthrough came
in the 1960s with the development of clotting factor concentrates
manufactured from human plasma donations.C2
- In the 1970s, a significant number
of reports began to appear about viral transmission associated
with factor concentrates. This became even more alarming in
the 1980s when an estimated 50 percent of all people with hemophilia
contracted HIV from their clotting factor products.C3
- The risk of infection to people
with hemophilia underscored the need for treatments that were
not derived from human plasma sources.
- The most recent advance in hemophilia
therapy is the use of recombinant technology to produce factor
products independent of human plasma as a source.
- This groundbreaking technology
greatly reduces the risk of human blood-borne viruses.C4
- Recombinant technology provides
a fundamentally different approach from the traditional fractionation
and purification of human plasma for the preparation of replacement
factor products for the treatment of patients with hemophilia.C5
- The use of recombinant technology
has been applied for production of factor VIII and factor IX.
The viral safety of recombinant factors is assured by the use
of non-human production cells as the source of factor VIII or
factor IX.C6
- The viral safety of recombinant
products is further ensured by extensive testing of the cell
line, validation of the viral removal capacity of the purification
process, and, ideally, avoiding the use of blood or plasma products
in the formulation of the end product.E1
Hemophilia
Ontario Backgrounder
Hemophilia Ontario
is committed to improving the quality of life of people affected
by hemophilia and related bleeding disorders and to work toward
a cure.
The organization
was formed in 1957 to address, in a consistent way, the varying
medical needs of people with hemophilia. With the involvement
of a small core of volunteers, this group began to advocate for
targeted care. The 1960's and 1970's saw the development of city-based
volunteer "auxiliaries" formed across Ontario. As well, that period
saw the introduction of freeze-dried factor concentrates that
reduced the dependence on hospital facilities by allowing people
with hemophilia to treat themselves at home. In 1973 the Toronto
Auxiliary established a fellowship which had as its objective
the "interdisciplinary coordination of activities contributing
to the development of a comprehensive care centre". This fund
was established at Toronto’s Hospital for Sick Children (HSC)
and in 1974, the first part-time nurse practitioner position was
created at the HSC.
The early part of
the 1980s saw continued research on the needs and viability of
comprehensive care programs. By 1982, Toronto’s St. Michael's
Hospital had been selected as the site for an adult comprehensive
clinic and the recruitment of a full-time nurse coordinator began.
The mid-1980s brought new fears to the hemophilia community. Serious
doubts were raised about the purity of blood products and their
effects - people with hemophilia were being infected with HIV.
As the decade progressed and the consequences of HIV infection
became more apparent, a shift of emphasis towards education and
prevention occurred. Helping HIV+ people with hemophilia and their
families cope with this catastrophic element in their lives became
the paramount concern of Hemophilia Ontario; this work continues
today.
In the early 1990s
a new generation of better, safer blood products became available.
These included recombinant and monoclonal factor VIII concentrates
for people with Hemophilia A, a very high-purity, heat and detergent-solvent-treated
factor IX product for people with Hemophilia B, and a heat-treated
factor VIII concentrate containing von Willebrands factor for
people with Willebrands' disease.
New concerns about Hepatitis
C being transmitted through blood and blood products were highlighted
at a national conference in 1992 showing an incidence of as much
as 64% in people with hemophilia. Increasing pressure forced the
Federal government in 1994 to convene the Krever Inquiry into
the Canadian Blood System. During this time the Federal government,
in response to public outcry, announced financial compensation
for people infected with HIV through blood and blood products.
Hemophilia Ontario
has been at the forefront of advocating for compensation for people
infected with contaminated blood and blood products and for a
safe national blood system.
Throughout the 1990s
and into the millennium, Hemophilia Ontario continues to offer
a range of support, services, and programmes including: outreach
and education about treatments for people with hemophilia and
related bleeding disorders; advocacy, particularly on the safety
of the blood supply; peer support; family programs for newly diagnosed
children; information on treatments and care for people with HIV
and Hepatitis C; youth activities including annual summer camp
and canoe expeditions.
The Run For Hemophilia,
a project that focuses attention on hemophilia through the determination
of Paul McNeil to race in the Canadian International Marathon
is one unique example of how Hemophilia Ontario is able to promote
greater public awareness and information on hemophilia. In collaboration
with corporate partner, Wyeth/Genetics Institute, Hemophilia Ontario
will be able to further enhance its role in education and overall
care of the hemophilia community and to contribute to greater
understanding of this genetic condition.
Hemophilia Ontario
is organized into five regions: Ottawa and Eastern Ontario, with
an office in Ottawa, Toronto and Central Ontario, based in Toronto,
Central West Ontario with an office in Hamilton, South Western
Ontario located in London, and North-Eastern Ontario with its
office in Sudbury.
The WYETH/Genetics Institute
CORPORATE BACKGROUNDER
Working Together for People with Hemophilia
- A leader in the field of recombinant
therapeutic agents, WYETH/Genetics Institute is a global pharmaceutical
company dedicated to the development and commercialization of
innovative protein-based therapeutics for the treatment of serious
medical conditions.
- WYETH/Genetics Institute is represented
in Canada by Wyeth-Ayerst Canada Inc., a subsidiary of American
Home Products Corporation.
- WYETH/Genetics Institute was formed
in 1997 when Genetics Institute became a subsidiary of American
Home Products Corporation and a unit of Wyeth-Ayerst Pharmaceuticals.
- WYETH/Genetics Institute has demonstrated
a commitment to the hemophilia community for more than 19 years.
A pioneer in the discovery and development of coagulation factors
for controlling bleeding episodes in hemophilia, WYETH/Genetics
Institute has been dedicated to helping individuals who have
hemophilia.
- In 1997, WYETH/Genetics Institute
introduced BeneFIX* Coagulation Factor IX (Recombinant),
an albumin-free clotting factor for hemophilia B in Canada.
- The WYETH/Genetics Institute commitment
to the hemophilia community is centered on bringing safe and
effective treatments to patients and their health care providers.
- WYETH/Genetics Institute supports
the hemophilia community through educational materials for both
patients and health care providers, sponsorship of hemophilia
research, as well as direct support of hemophilia organizations’
educational efforts worldwide.
- The WYETH/Genetics Institute commitment
and dedication to the hemophilia community is illustrated by
the company’s "Helixman" logo, which transforms
the DNA helix into a human-like figure.
- By supporting research for its
products, as well as providing important product and clinical
trial information, WYETH/Genetics Institute offers the hemophilia
community an important resource for innovative treatment, effective
and virally safe products, as well as information, education
and community support.
Benefix®
Fact Sheet
- Genetics
Institute began research
on BeneFIX in 1985 and, during the summer of 1996, filed a Biologics
License Application (BLA) for BeneFIX with the U.S. Food and
Drug Administration, a Marketing Approval Application with the
European Medicine Evaluation Agency and a New Drug Submission
with the Canadian Health Protection Branch.
- BeneFIX®
was
licensed in Canada in April 1997 and was sold under the Special
Access Program until July 1998. The product was officially launched
to the Canadian market in July 1998.
- BeneFIX
Coagulation Factor IX (Recombinant) has
been developed and commercialized by Genetics Institute, Inc.,
for the prevention and control of bleeding in hemophilia B,
also known as Christmas disease. In 1997, Genetics Institute
became a subsidiary of American Home Products and a unit of
Wyeth-Ayerst Pharmaceuticals.
- Hemophilia
B is a rare, inherited (X-linked) blood clotting
disorder characterized by a deficiency or defect in Factor IX,
one of a number of proteins involved in blood clotting. It occurs
in about one in 25,000 male births.
- Because
it is made through
recombinant technology and not from human blood, BeneFIX eliminates
the risk of blood-borne viral transmission. No blood or plasma
proteins are used during the manufacturing of BeneFIX.
- BeneFIX
addresses the hemophilia
B population’s concerns about product shortages due to
limitations in the blood supply.
- Factor IX
products available
until now have all been made from human blood. While earlier
Factor IX products have been specifically treated to reduce
the possible transmission of human pathogenic viruses, the risk
of viral infectivity from these products has not been totally
eliminated. Since BeneFIX Coagulation Factor IX (Recombinant)
is made through recombinant technology, without the addition
of blood or plasma products, it eliminates the risk of blood-borne
viral contamination. Further, the supply of BeneFIX does not
depend on blood donors. Genetics Institute expects to be able
to manufacture product at levels sufficient to meet worldwide
demand.
- Genetics
Institute’s BeneFIX®
is the only recombinant Factor IX product available on the market.
There are no other recombinant Factor IX products in development
(ie: clinical trials).
Dr.
Carcao
Biography
Manuel Carcao, BSc,
MD, FRCP(C), received his medical degree in 1990 and is certified
in Paediatrics and Haematology. Since 1998 he has been on staff
at The Hospital for Sick Children where he is Associate-Director
of the Comprehensive Care Hemophilia Centre. Dr. Carcao runs a
busy Haematology and Bleeding Disorders practice managing children
with leukemia, lymphoma and various bleeding disorders. In addition
to clinical work, Dr. Carcao does research into bleeding disorders
and provides a number of teaching sessions to students.
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