This e-newsletter is a monthly publication of the Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.
Contents:
ITP and Platelet Disorders Research and Treatments
- Hematologists Learn About Blood Clots in ITP Patients
- Nplate Effective in Real Life Situation
- New ITP Treatment to Watch - Syk Inhibitor
- ITP Patients Have More Problems with Memory and Fainting than Others
Hospitals, Insurance, and Medical Care
General Health and Medicine
ITP and Platelet Disorders Research and Treatments
Hematologists Learn About Blood Clots in ITP Patients
In the current issue of The Hematologist, Dr. Keith McCrae, an ITP expert, answered a question from a hematologist who was surprised that his ITP patient developed blood clots in her veins and lungs. "Is this common?" the hematologist asked. The brief answer was "yes", blood clots are more common than you would think in patients with low platelets. While no one knows the specific cause, some possibilities for unwanted clotting in ITP patients are: increased number of microparticles, the incidence of antiphospholipid antibodies, and the byproducts of antibody-mediated platelet destruction.
McCrae K. "Ask The Hematologist." The Hematologist November/December 2011. November 1, 2011.
http://www.hematology.org/Publications/Hematologist/2011/7179.aspx
Nplate Effective in Real Life Situation
Clinical trials often exclude patients who have other diseases or don't fit into the age bracket studied. However, after a treatment is approved, it is often used in patients who may not have been eligible for the clinical trial. In a new study, 72 ITP patients received romiplostim (Nplate) in a compassionate use program in France and were not a part of a clinical trial (20% of them would have been ineligible.) In this study, more closely paralleling clinical practice, 65% of the people benefited from the treatment.
Stasi R. "ITP, Interrupted." Blood. Oct 20;118(16):4297-8.
http://bloodjournal.hematologylibrary.org/content/118/16/4297.full
Khellaf M et al. "Romiplostim safety and efficacy for immune thrombocytopenia in clinical practice: 2-year results of 72 adults in a romiplostim compassionate-use program." Blood. 2011 Oct 20;118(16):4338-45.
http://www.ncbi.nlm.nih.gov/pubmed/21832276
New ITP Treatment to Watch – Syk Inhibitor
Portola, a biotech company, entered into a financial agreement with Biogen Idec, a much larger company, to develop and test PRT062607. This compound, currently in phase I testing, is a spleen tyrosine kinase (Syk) inhibitor thought to have benefit for lupus, rheumatoid arthritis, and ITP. Biogen will lead the development for the larger diseases and Portola will develop the treatment for smaller populations such as ITP. Syk modulates immune signaling and the Syk inhibitor alters that, giving it a different mechanism of action than other treatments for these diseases. In a previous study of another Syk compound, R406, half of the 16 ITP patients tested showed a persistent response, achieving a platelet count greater than 50,000.
Davis J. "Deals of the Week Wonders, Will Artemis Help AZ in Its Hunt for Late-Stage Pipeline?" The In Vivo Blog. October 28, 2011.
http://invivoblog.blogspot.com/2011/10/deals-of-week-wonders-will-artemis-help.html
Press Release Biogen Idec and Portola Pharmaceuticals. "Biogen Idec And Portola Pharmaceuticals Announce Global Collaboration For Oral Syk Inhibitor Program Targeting Autoimmune And Inflammatory Diseases." October 27, 2011
http://www.biogenidec.com/press_release_details.aspx?ID=5981&ReqId=1622768
Podolanczuk A et al. "Of mice and men: an open-label pilot study for treatment of immune thrombocytopenic purpura by an inhibitor of Syk." Blood. 2009 Apr 2;113(14):3154-60.
http://www.ncbi.nlm.nih.gov/pubmed/19096013
ITP Patients Have More Problems with Memory and Fainting Than Others
ITP patients from the ITP Support Association in the UK and their friends answered standard questions concerning their autonomic nervous system (controls body functions such as dizziness and fainting) as well as questions concerning memory and concentration. When the ITP patient scores were compared with age and sex matched controls, the ITP patients had significantly more autonomic nervous system and cognitive problems. The nervous system and cognitive problems were associated with each other, but did not correlate with disease severity.
Frith J et" al. Cognitive symptoms are common in ITP and associate with autonomic symptom burden. " Eur J Haematol. 2011 Nov 2. doi: 10.1111/j.1600-0609.2011.01730.x. [Epub ahead of print]
http://www.ncbi.nlm.nih.gov/pubmed/22044734
Hospitals, Insurance, and Medical Care
USA Lags in Healthcare Quality Improvements
According to the National Scorecard on U.S. Health System Performance, 2011, an assessment of healthcare quality by the Commonwealth Fund summarizing data collected between 2007 and 2009, the US continues to lag behind other countries in healthcare quality improvement. Healthcare did improve for some chronic conditions such as high blood pressure where there was a national and institutional focus on data reporting. However, the scorecard showed increased problems with access to care, rising costs, and regional disparities in quality. In another report, researchers from the UK measured the efficiency and efficacy of healthcare in 17 western countries using national healthcare costs and mortality rates. The US ranked the highest in healthcare expenditures and 17th in mortality rate improvement.
The Commonwealth Fund Commission on a High Performance Health System. "Why Not the Best? Results from the National Scorecard on U.S. Health System Performance." 2011. The Commonwealth Fund. October 18, 2011
http://www.commonwealthfund.org/Publications/Fund-Reports/2011/Oct/Why-Not-the-Best-2011.aspx
Pritchard C,Wallace MS. "Comparing the USA, UK and 17 Western countries' efficiency and effectiveness in reducing mortality." JRSM Short Rep. 2011 Jul;2(7):60.
http://shortreports.rsmjournals.com/content/2/7/60.full.pdf+html
http://www.ncbi.nlm.nih.gov/pubmed/21847442
Reduced Red Tape to Improve Care
The Department of Health and Human Services is proposing two rule changes and finalizing a third, all designed to reduce paperwork and healthcare costs, and thus improve efficiency. For example, the new rules would eliminate the need for a single Director of Outpatient Services, eliminate the requirement that all lab work and radiology services be done in-house, and allow physician assistants and advanced practice registered nurses to assume more responsibilities.
HHS News Release: "Obama Administration's regulatory reductions to save health care system nearly $1.1 billion." October 18, 2011.
http://www.hhs.gov/news/press/2011pres/10/20111018a.html
General Health and Medicine
Clean With Steam - Better Than Chemicals
Steam cleaners can remove dirt, mold, and dust without using the harsh chemicals that can cause reactions in sensitive individuals. The steam breaks the bond between the dirt and the surface, leaving a very small amount of moisture that is easily removed. The benefits of steam cleaning were quantified in a study by the Environmental Protection Agency, concluding, among other things, that steam cleaning followed by vacuuming had a longer-lasting effect against allergen-causing dust mites than vacuuming alone.
Note: Exposure to chemicals and allergens can cause platelets to fall in some people. See the PDSA Warnings page for more information.
http://www.pdsa.org/about-itp/warnings.html
Laszewski D. "Vaporize dirt using steam not chemicals." Consumer Search. October 24, 2011.
http://www.consumersearch.com/blog/vaporize-dirt-using-steam-not-chemicals
Vojta PJ et al. "Effects of Physical Interventions on House Dust Mite Allergen Levels in Carpet, Bed, and Upholstery Dust in Low-Income, Urban Homes." Environ Health Perspect. 2001 Aug;109(8):815-9.
http://ehp03.niehs.nih.gov/article/fetchArticle.action?articleURI=info:doi/10.1289/ehp.01109815
http://www.ncbi.nlm.nih.gov/pubmed/11564617
Sugary and Fatty Foods Addictive Like Cocaine
In study after study, 28 studies in this year alone, sugary and fatty processed foods provoked the same changes in the brains of lab animals and people as cocaine and other addictive drugs, prompting the animals and humans to consume more processed food to experience the same amount of pleasure. Although the food industry lobbyists say the addiction link hasn't been proven, others feel the connection is certain and could trigger legal actions like the cigarette industry faced years ago. There are other significant financial and human costs at stake. The food and beverage industry is a $1 trillion enterprise. Obesity, along with related illnesses, costs about $147 billion annually to treat and can reduce life expectancy as much as 10 years.
Langreth R, Stanford DD. "Fatty Foods Addictive as Cocaine in Growing Body of Science" Bloomberg News. Nov 1, 2011
http://www.bloomberg.com/news/2011-11-02/fatty-foods-addictive-as-cocaine-in-growing-body-of-science.html
This e-newsletter is published by the Platelet Disorder Support Association, 133 Rollins Avenue, Suite 5, Rockville, MD 20852, phone 1-87-Platelet, fax: 301-770-6638, web: http://www.pdsa.org, e-mail: pdsa@pdsa.org
