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Issue 185 - 9 June 2011

Articles about Rare Diseases 

1. Policy alternatives for treatments for rare diseases.
By Panju, Abbas H. & Bell, Chaim M. CMAJ: Canadian Medical Association Journal, 11/23/2010, Vol. 182 Issue 17: pE787-E792
The article presents a reprint of the article "Policy alternatives for treatments for rare diseases," by Abbas H. Panju and Chaim M. Bell, which appeared in It mentions that partnership among pharmaceutical companies, clinical community, and federal government are factors needed for the development of drugs used for treating rare diseases. It adds that Canada's legislators passed Bill M-426 for the development of a national strategy to finance drugs to cure rare diseases.

2. Adoption Agents
By Wapner, Jessica. Scientific American, Jun 2010, Vol. 302 Issue 6: p19-20
The article discusses the U.S. Orphan Drug Act that funds pharmaceutical research for treatment of illnesses that affect 200,000 U.S. residents or less. Despite the favorable financial arrangements that the law establishes for drug companies to develop such drugs, the article says that drug companies have balked at developing drugs that may help limited numbers of people. In support of this notion, the article cites Peter Saltonstall, president of the patient advocacy group National Organization for Rare Diseases. The U.S. Food and Drug Administration's head of the Office of Orphan Products Designation, Tim Coté, also is cited.

3."Rare essentials": drugs for rare diseases as essential medicines
By Stolk, Pieter et al. Bulletin of the World Health Organization, Sep 2006, Vol. 84 Issue 9: p745-751
Since 1977, the WHO Model List of Essential Medicines (EML), published by WHO, has provided advice for Member States that struggle to decide which pharmaceutical technologies should be provided to patients within their public health systems. Originating from outside WHO, an incentive system has been put in place by various governments for the development of medicines for rare diseases (‘orphan drugs’). With progress in pharmaceutical research (e.g. drugs targeted for narrower indications), these medicines will feature more often on future public health agendas. However, when current definitions for selecting essential medicines are applied strictly, orphan drugs cannot be part of the WHO Essential Medicines Programme, creating the risk that WHO may lose touch with this field. In our opinion WHO should explicitly include orphan drugs in its policy sphere by composing a complementary Orphan Medicines Model List as an addition to the EML. This complementary list of ‘rare essentials’ could aid policy-makers and patients in, for example, emerging countries to improve access to these drugs and stimulate relevant policies. Furthermore, inconsistencies in the current EML with regard to medicines for rare diseases can be resolved. In this paper we propose selection criteria for an Orphan Medicines Model List that could form a departure point for future work towards an extensive WHO Orphan Medicines Programme. [ABSTRACT FROM AUTHOR]

4. Companies look for profit in orphan drugs
By Thompson, Cheryl A. American Journal of Health-System Pharmacy, 11/15/2010, Vol. 67 Issue 22: p1892-1896
The article focuses on several pharmaceutical companies and their initiatives related to the development and commercialization of orphan drugs. It says that GlaxoSmithKline established a unit that specializes in drugs for rare diseases. It states that Pfizer Inc. formed the Orphan and Genetic Diseases Research Unit in addition to its specialty care business unit focusing on orphan drugs. It also mentions that Amicus Therapeutics Inc. is engaged in developing drugs for uncommon diseases.

Articles from MEDSURG Nursing journal, Mar/Apr 2011

5. Future of Nursing Initiative: Nurses Are The Key
By Fights, Sandra D. MEDSURG Nursing, Mar/Apr2011, Vol. 20 Issue 2: p58-59
The article discusses the recommendations in the report by the Institute of Medicine titled "The Future of Nursing: Leading Change, Advancing Health," and the role of nurses in achieving quality care. Among the recommendations are nurses' full practice of their education, training and licensure, allowing nurses take higher levels of education through an improved system, and healthcare workforce planning and policymaking. Nurses are advised to set goals, join in policy committees at work and participate in workforce planning surveys.

6. Surveys, Surveys, and More Surveys.
By Connelly, Lynne M. MEDSURG Nursing, Mar/Apr2011, Vol. 20 Issue 2: p61-95
The author discusses the considerations in conducting surveys. She explains her concerns on several points related to surveys, including data collection methods, the number of surveys distributed, and quality control. She outlines the basic principles of good survey design, such as identifying the things needed from the audience, using previously developed scales or subscales is they are available to save time, writing meaningful items that address only one idea per item, and using clear and unambiguous language and avoiding technical terms and jargon.

7. The Effect of Tai Chi on Cognition In Elders with Cognitive Impairment
By Chang, Jason al. MEDSURG Nursing, Mar/Apr2011, Vol. 20 Issue 2: p63-69
This one-arm pilot study investigated the effect of tai chi on cognition in elders with cognitive impairment. Although no significant difference existed between pre- and post-test performance on all cognition measures, a dose-response relationship was demonstrated between attendance and some cognition measures. [ABSTRACT FROM AUTHOR]

8. Medical-Surgical Nurses' Perceived Value of Certification Study
By Haskins, Mimi et al. MEDSURG Nursing, Mar/Apr2011, Vol. 20 Issue 2: p71-93
The Medical-Surgical Nursing Certification Board replicated a study to validate medical-surgical nurses' perceptions, values, and behaviors related to specialty certification. Study results indicated both certified and non-certified medical-surgical nurses had positive perceptions of the value of certification. [ABSTRACT FROM AUTHOR]

9. Occupational Hazardous Drug Exposure Among Non-Oncology Nurses
By Polovich, Martha et al. MEDSURG Nursing, Mar/Apr2011, Vol. 20 Issue 2: p79-97
Oncology units where patients with cancer receive chemotherapy are not the only settings where hazardous drugs are found. Because of increased use of antineoplastic agents for non-oncology indications, nurses' risk for occupational exposure is distributed more widely than in the past. [ABSTRACT FROM AUTHOR]

Journals - Table of Contents

10. From Employment Today, June 2011
Does location affect productivity?; Overseas opportunities entice kiwi workers; Flexibility the key to keeping older workers; the rules of engagement
10B. Boomerang employees better hires; Employers risk losing older staff's knowledge; Social networking can damage job prospects; Lack of recognition an excuse to slack off
10C. No succession plans in place; Too pretty for the job; Employees the number one customers
10D. Spirit of good cheer [Pernod Ricard New Zealand underwent significant change last year however this did not get in the way of it being voted one of New Zealand's most attractive employers]
10E. Tapping young talent [Getting young people into the workforce and encouraging their commitment can be a challenge]
10F. Connective tissue: New HRIS brings benefits
10G. Reaching for the clouds: How to make your HRIS agile
10H. Dashboard dangers [How many workplace dashboards fail to deliver and how to ensure your dashboard is a valuable tool for managers]
10I. Proof's in the pudding [Conducting a training needs analysis]
10J. HR - a valued resource?
10K. Private practice [A recent Employment Court decision shone the spotlight on privacy and the right to access information]
10L. Changing times [Recent changes to s103A of the Employment Relations Act 2000]
10M. Signed, sealed, delivered [The written employment agreement]
10N. Accounting for the future [BDO Waikato and its steps towards sustainability]
10O. So you want to work in HR?
10P. Executive leasing: the real story
10Q. Added incentive
10R. Employment case notes {Communication with remote workers; entitlement to rest breaks; sleeping on the job; bullying and harassment; bargaining fees; abusive worker claimed racial harassment]


11. Health and Productivity Management Conference
‘Health and Productivity: Model for Economic Competitiveness’

Date: 11 August 2011
Venue: Hilton, Auckland
More information:

News - National

12. A new generation's new workplace
Stuff - 7 June 2011

Jason Siner buys a lot of coffee. It's one of the Los Angeles-based talent consultant's few overheads when he works in Sydney. ''With what I do, it would be a bit slimey meeting 18-year-old actresses in my hotel room, so I just move between cafes and everyone feels comfortable,'' says Mr Siner, pushing aside his Macbook and iPad to make room for another delivery of coffee at Glebe's Well Connected Cafe. Siner calls himself a talent scout. HR types call him a ''remote worker'', operating within an increasingly ''agile working environment''.

13. Pharmac drug funding decision 'a death sentence'
Radio New Zealand - Updated at 9:39pm on 7 June 2011

Pharmac is being accused of imposing a death sentence on some patients by refusing to approve funding for an expensive medicine. The Organisation for Rare Disorders, Lysosomal Diseases New Zealand and the Muscular Dystrophy Association launched a campaign on Tuesday for better access to medicines for those with rare diseases. Lysosomal diseases are caused by an enzyme deficiency, and the medicines used to treat them - enzyme replacement therapy (ERT) -can cost $500,000 per patient per year. Masterton mother-of-three Allyson Lock told Nine to Noon she is one'a-death-sentence'

News - International

14. E. coli and the Fear Factor
The latest outbreak of the disease can be deadly but that's no reason to panic
Wall Street Journal - 9 June 2011

15. Time running out to solve E.coli mystery
News: World - Wed, 8 Jun 2011
A French farm worker empties cucumbers into a container after failing to sell them due to the ongoing food crisis in Europe. (AP Photo/Jacques brinon) Health experts say time is running out for German investigators to find the source of the world's deadliest E.coli outbreak, and some have been surprised - even shocked - at lapses in the German investigation

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