Featured Research

from universities, journals, and other organizations

Canada needs a policy for rare disease treatment

Date:
July 12, 2010
Source:
Canadian Medical Association Journal
Summary:
Canada needs a national approach to funding drugs for rare diseases and can learn from other countries, according to experts.

Canada needs a national approach to funding drugs for rare diseases and can learn from other countries, states an analysis article in CMAJ (Canadian Medical Association Journal).

Due to relatively small markets, pharmaceutical companies may be reluctant to conduct research into new treatments or to manufacture drugs, and there is a constant risk that they may stop making these drugs. A partnership is needed between the federal government, pharmaceutical companies and the medical communities to ensure people with rare diseases can get treatment.

"In stark contrast to other developed nations and despite the fact that the number of rare diseases continues to increase along with the number of individuals affected, Canada does not have a policy framework connecting these three groups, and attempts to function with a relatively piecemeal approach," writes Dr. Chaim Bell, St. Michael's Hospital, Toronto and coauthor.

The paper outlines several elements that are part of rare disease policies in other jurisdictions such as the United States, the European Union, Japan and Australia. Two elements that Canada could incorporate in the short term would be to define rare diseases and to develop patient registries to track disease characteristics, treatments and health outcomes.

In the longer term, Canada needs to create formal rare disease drug legislation, which could include incentives for pharmaceutical companies to invest in developing new drug treatments. The authors suggest an alternate economic evaluation to ensure there is public funding for these drugs.

"This funding would be rooted in the rule of rescue: the imperative that therapies should be provided to individuals suffering from life-threatening diseases in the absence of any other alternatives, irrespective of cost," state the authors. "In the context of treatment for rare diseases, adopting the rule would allow public funding of expensive drugs that would potentially help a very small number of Canadians." The rule of rescue is used to explain why expensive rescue missions are undertaken to rescue a single person lost at sea.

"It is time for Canada to take bold and decisive steps and develop a nation-wide and federally financed approach to rare diseases that ensures adequate health care for all Canadians," they conclude.


Story Source:

The above story is based on materials provided by Canadian Medical Association Journal. Note: Materials may be edited for content and length.


Cite This Page:

Canadian Medical Association Journal. "Canada needs a policy for rare disease treatment." ScienceDaily. ScienceDaily, 12 July 2010. <www.sciencedaily.com/releases/2010/07/100712121830.htm>.
Canadian Medical Association Journal. (2010, July 12). Canada needs a policy for rare disease treatment. ScienceDaily. Retrieved April 20, 2014 from www.sciencedaily.com/releases/2010/07/100712121830.htm
Canadian Medical Association Journal. "Canada needs a policy for rare disease treatment." ScienceDaily. www.sciencedaily.com/releases/2010/07/100712121830.htm (accessed April 20, 2014).

Share This



More Health & Medicine News

Sunday, April 20, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Nine-Month-Old Baby Can't Open His Mouth

Nine-Month-Old Baby Can't Open His Mouth

Newsy (Apr. 19, 2014) Nine-month-old Wyatt Scott was born with a rare disorder called congenital trismus, which prevents him from opening his mouth. Video provided by Newsy
Powered by NewsLook.com
'Holy Grail' Of Weight Loss? New Find Could Be It

'Holy Grail' Of Weight Loss? New Find Could Be It

Newsy (Apr. 18, 2014) In a potential breakthrough for future obesity treatments, scientists have used MRI scans to pinpoint brown fat in a living adult for the first time. Video provided by Newsy
Powered by NewsLook.com
Little Progress Made In Fighting Food Poisoning, CDC Says

Little Progress Made In Fighting Food Poisoning, CDC Says

Newsy (Apr. 18, 2014) A new report shows rates of two foodborne infections increased in the U.S. in recent years, while salmonella actually dropped 9 percent. Video provided by Newsy
Powered by NewsLook.com
Scientists Create Stem Cells From Adult Skin Cells

Scientists Create Stem Cells From Adult Skin Cells

Newsy (Apr. 17, 2014) The breakthrough could mean a cure for some serious diseases and even the possibility of human cloning, but it's all still a way off. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins