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 October 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 October 20, 2014).

Share This



More Health & Medicine News

Monday, October 20, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

How Nigeria Beat Its Ebola Outbreak

How Nigeria Beat Its Ebola Outbreak

Newsy (Oct. 20, 2014) The World Health Organization has declared Nigeria free of Ebola. Health experts credit a bit of luck and the government's initial response. Video provided by Newsy
Powered by NewsLook.com
Another Study Suggests Viagra Is Good For The Heart

Another Study Suggests Viagra Is Good For The Heart

Newsy (Oct. 20, 2014) An ingredient in erectile-dysfunction medications such as Viagra could improve heart function. Perhaps not surprising, given Viagra's history. Video provided by Newsy
Powered by NewsLook.com
Ebola Worries End for Dozens on U.S. Watch Lists

Ebola Worries End for Dozens on U.S. Watch Lists

Reuters - US Online Video (Oct. 20, 2014) Forty-three people who had contact with Thomas Eric Duncan, the first person diagnosed with Ebola in the U.S., were cleared overnight of twice-daily monitoring after 21 days of showing no symptoms. Rough Cut (no reporter narration). Video provided by Reuters
Powered by NewsLook.com
Fauci: Ebola Protocols to Focus on Training

Fauci: Ebola Protocols to Focus on Training

AP (Oct. 20, 2014) Dr. Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, says he expects revised CDC protocols on Ebola to focus on training, observation and ensuring health care workers are more protected. (Oct. 20) Video provided by AP
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:

Strange & Offbeat Stories


Health & Medicine

Mind & Brain

Living & Well

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