Steve Nash appeals to Ontario Government to fund treatment for rare
TORONTO, Aug. 15 /CNW Telbec/ - National Basketball Association Superstar
Steve Nash has recorded a YouTube and Facebook message urging the Ontario
government to fund the only treatment available for sufferers from Hunter
syndrome, a rare progressive genetic enzyme deficiency disorder.
Hunter syndrome, or MPS II, interferes with the body's ability to
eliminate cellular waste, which damages tissue and organ functions and can
lead to severe clinical complications and early death.
Health Canada approved the Hunter syndrome enzyme replacement therapy
(ERT) medication, more than a year ago. Alberta and British Columbia are
currently funding this life-prolonging treatment, but Ontario continues to
refuse coverage. Since there are only six people with Hunter syndrome living
in Ontario, the economic impact of treatment funding is minimal.
"The earlier patients receive the treatment, the better chance they have
of stopping the progression of Hunter syndrome," Nash said. "A close childhood
friend, Simon Ibell, has seen his health improve significantly since being on
enzyme replacement therapy. I hope all Canadians will join me in asking their
politicians to fund enzyme replacement therapy for Hunter syndrome in Ontario
and across Canada."
Ibell, a 30 year-old Toronto resident, was diagnosed with Hunter syndrome
at the age of two, long before there was a treatment for the disorder. Until
he began receiving enzyme replacement therapy (ERT) as part of a clinical
trial five years ago, his quality of life was in severe decline. Treatment
with enzyme replacement therapy has reduced Simon's pain and suffering and
improved his quality of life and life expectancy.
"Even at my age, the treatment has had such a positive impact on my life
- improved breathing, decreased organ size, improved joint flexibility," Simon
said. "Daily tasks are so much easier."
Currently, Ibell is receiving enzyme replacement therapy because he was
part of a clinical trial. His future treatment is not guaranteed. The
termination of ERT would result in the return of severe medical complications,
including tissue and organ damage.
Another Hunter syndrome patient, Szymon Cajmer, a 13 year-old boy in
Windsor, Ontario now profoundly deaf due to Hunter syndrome, has not had
access to treatment. His family is pleading with the Ontario government to
approve treatment funding.
Physical manifestations of Hunter syndrome include thickening of the
heart valves, grave difficulty breathing, distinct facial features, enlarged
head, abdomen, liver and spleen, and severe hearing loss. In some cases,
mental disability may ensue.
Nash encourages the public to join him in petitioning The Honourable
David Caplan, Minister of Health of Ontario, and the Ontario Government at
<a href="http://www.ipetitions.com/petition/treat_hunter_syndrome/">www.ipetitions.com/petition/treat_hunter_syndrome/</a> to help secure treatment
for Simon Ibell and others. View the YouTube video at
Steve Nash, a professional basketball player from Victoria, B.C., plays
for the Phoenix Suns of the National Basketball Association (NBA) and has
twice been named the NBA's Most Valuable Player. Off the court, Nash is
heavily involved in charity and humanitarian work and last year was named an
Officer of the Order of Canada. In 2006, Time Magazine named Nash one of the
100 most influential people in the world.
Simon Ibell is a director of the Canadian MPS Society. He and Steve Nash
have been friends since their high school days in Victoria, B.C. Ibell was
born with the very rare, progressive and life-threatening genetic disease
called Hunter Syndrome or MPS II. The disease causes devastating physical
problems affecting all major organs: heart, lungs, sometimes central nervous
system and liver as well as hearing, sight, breathing and joint movement.
Families of children born with this disease endure watching their children's
For further information:
For further information: Charles Pitts, Oromedia, (877) 990-9044;
Petition: www.ipetitions.com/petition/treat_hunter_syndrome/; Video interview
with Steve Nash available at www.youtube.com/watch?v=2w3ayN2ezAw