School of Public Health, University of Alberta: $1.5 Million to Promote Fairer Access to Innovative Treatments for Rare Diseases
(firmenpresse) - EDMONTON, ALBERTA -- (Marketwire) -- 03/22/12 -- A research team from the University of Alberta's School of Public Health has received $1.5 million to develop effective policies that promote fairer access to treatment for patients with rare diseases.
In general, a disease is considered rare when it affects less than one in 2,000 people. However, with more than 6,800 identified rare diseases, nearly 1 in 11 people are affected.
People with rare diseases have difficulty getting access to treatment. "The issues are complex," explains Dev Menon, professor in the School of Public Health and lead researcher. "We need to better understand how innovations are brought to market, how diseases are manifested, and how decisions are made about who does, or does not, get treatment."
Currently, policies about access to new technologies for rare conditions across Canada lack a shared vision. Governments receive requests for expensive drugs for such conditions and try to address them in different ways. This has led to striking differences in access to therapies for patients with the same condition, but living in different jurisdictions. In addition, the costs related to developing innovative drugs can be high, resulting in treatment costs of up to $2 million a year. In some cases, this has resulted in denial of coverage.
Ed Koning suffers from Fabry, a rare and life-threatening disease treatable only with an enzyme replacement therapy at a cost of $250,000 per year. "When you're dealing with a system that lacks adequate policies and processes, you don't know if the only treatment that will keep you alive is covered."
The research, funded by the Canadian Institutes of Health Research, will consider the entire lifecycle of treatment innovations and will involve all of the players, including pharmaceutical companies, government ministries, researchers, clinicians, patients and community members throughout the process.
The overall aim is to create policies that promote fairer access to innovative therapies while maintaining a sustainable health-care system.
The following individuals will be available for interviews:
Dev Menon, PhD
Professor, School of Public Health, University of Alberta
Tania Stafinski, PhD
Research Associate, School of Public Health, University of Alberta
Ed Koning, patient with Fabry disease
For interviews, contact Donna Richardson.
Contacts:
School of Public Health, University of Alberta
Donna Richardson
Director, Marketing and Alumni Relations
780.492.1386
Cell: 780.719.8111
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Datum: 22.03.2012 - 09:00 Uhr
Sprache: Deutsch
News-ID 1095561
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