Revision - Decision Fails Patients with Transfusion-Dependent Anemia
TORONTO, June 1 /CNW/ - Patients requiring regular blood
transfusions are challenging a recent decision by the Committee to
Evaluate Drugs (CED) that severely limits access to the new iron
removal (chelation) therapy, Exjade.
"The decision reflects a total lack of understanding of the
importance of Exjade to patients with transfusion-dependent
anemias," said Riyad Elbard, president of the Thalassemia
Foundation.
These patients depend on blood transfusions to survive, but
ironically, the blood leaves excess iron that can damage the liver
and heart and lead to early death unless it is removed, or
chelated, from the body. Patients at risk are those with rare blood
disorders and bone marrow failure, such as thalassemia, sickle cell
disease, Fanconi's anemia, aplastic anemia and
myelodysplasia.
Exjade is the first once-a-day oral medication approved in Canada
that binds to the iron to remove it from the body. Before Exjade,
the only treatment for iron overload was deferoxamine, an infusion
drug that required patients to be connected to a pump for 8 to 12
hours per day five to seven days a week. The treatment has many
side effects and the process is so onerous that many patients,
especially young adults, do not comply sufficiently.
Perhaps a dozen deaths among this patient population over the past
few years are directly attributable to the complications of iron
overload.
"Many of our members will eventually suffer from
transfusion-related iron overload. Without iron chelation therapy
these members will suffer organ damage and die from iron overload.
Exjade represents a complete breakthrough in the area of iron
chelation. It has the potential to improve the quality of life of
our members as it places less of a burden on the patient allowing
them the freedom to take a once-a-day pill," said Dottie Nicholas,
president of the Sickle Cell Association of Ontario.
Also at risk are typically older patients with myelodysplasia who
require blood transfusions. Iron chelation is standard of care, but
many cannot tolerate the toxicities of deferoxamine or the infusion
regimen.
"Unfortunately, the Ontario decision denies patients with
myelodysplasia access to Exjade, so only those fortunate enough to
have a private drug plan have this treatment option," said Dr.
Richard Wells, Chair of the Medical-Scientific Advisory Committee,
Aplastic Anemia and Myelodysplasia Association of Canada.
Patients believe it is critical that decision makers understand the
impact of the decision to severely limit access to Exjade as a
treatment alternative for transfusion-related iron overload.
Lack of Patient Voice
"When new therapies cost more than old therapies, we appreciate
that drug plan decisions must be guided by scientific and economic
assessment to assure the best use of public healthcare funds.
However, they must also take into consideration the patient
impact," said Durhane Wong-Rieger, president of the Anemia
Institute.
Unfortunately, patients have limited input into health policy
decisions. Patients requiring blood transfusions were long ignored
by the healthcare system until tragedy struck in the form of HIV
and Hepatitis C. Many lives would have been saved if the
authorities had listened to the patients, who were among the first
to realize something was terribly wrong. It took thousands of lives
and an inquiry to change the blood system and to begin to include
the patient voice at the decision-making table.
Now, Canada's blood supply is among the safest in the world. But
patients are still at risk, unless they receive appropriate therapy
to manage the iron overload due to transfusions.
Call for Access
The patient and the physician community call upon the Ontario government and the drug manufacturer, Novartis Pharmaceuticals Canada, to work together in the best interest of patients to assure appropriate access to iron chelation therapy. We urge a speedy decision to assure that Exjade is available as a treatment option for all patients at risk for transfusion-dependent iron overload.
-30-
/For further information: or to request an interview please
contact
Jennifer Gordon, Carolyn Santillan, Edelman, Phone: (416) 979-1120
ext. 345,
351, Jennifer.gordon@edelman.com,
Carolyn.santillan@edelman.com/
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