Platelet E-News – July 18, 2005

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.


  • Clinical Research Study of Bleeding Disorders Announced
  • The Blood Journal Will Provide Recently Published Articles FREE
  • Assistance For Those Without Prescription Coverage
  • Hospital–Acquired Infections High In Pennsylvania
  • Do Medical Journal Articles Tell the Whole Story
  • Making Sense of Medical Research
  • Foods Affect The Action of Your Medications
  • H-Pylori Infection May Affect The Heart
  • Beating the Mosquitoes This Summer
  • Natural Herbal Treatment Developed by MDs (advertisement)



An abnormal platelet sac Clinical Research Study (protocol number 04-HG-0226) at the NIH is recruiting patients. The purpose of this Clinical Research Study is to learn more about bleeding disorders that result from defective blood platelets. The study is open to patients 2 through 80 years of age with the following disorders: gray platelet syndrome; Hermansky-Pudlak syndrome; isolated-storage pool deficiency; combined -storage pool deficiency; Chediak-Higashi syndrome; Griscelli syndrome; Wiskott-Aldrich syndrome; and thrombocytopenia absent radium syndrome.

Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local), 1-866-411-1010 (toll free)
Fax: 301-480-9793
Electronic Mail:


We update our clinical trials page with new information as we receive it. See:

Transportation to Clinical Trials

Clinical trials are not always conducted in locations convenient to the patients who may contribute and/or benefit the most. That’s a problem. One solution is Angel Flight of America. This organization provides air transportation for people to obtain a medical procedure or to participate in a clinical trial. For more information go to or call 800-446-1231.


“Blood”, the journal of the American Society of Hematology (ASH), announced that it will provide recently published articles to patients on request. There is no charge for this service. You can request an article by submitting the name of the author(s), title of the article, issue, date, and page number along with your name and email address to Not only will ASH provide you a copy of the article but if you provide the name of your physician and your physician’s fax number, ASH will fax a copy of the same article to your physician.

In addition to the patient article service, a maximum of five articles from the current issue are available free to everyone. ASH also provides free on-line access to all articles published 12 months ago or earlier.


The Partnership for Prescription Assistance, a coalition of companies, physicians and advocacy organizations, has a program to help qualifying patients who lack prescription coverage obtain the medicines they need. You can call 1-888-477-2669 or visit to learn more about this program.

Infocus, American autoimmune Related Disease Association, Inc., vol. 13, no. 2, June 2005, p6.


We are not picking on Pennsylvania. They were courageous enough to undertake a study to determine just how common hospital-acquired infections are; and there is no reason to think that Pennsylvania is any better or any worse than any other state. The results of the study give pause to anyone in or contemplating being in the hospital. The Pennsylvania study found that 11,668 hospital-acquired infections were associated with an additional 1,510 deaths, 205,000 extra hospital days and $2 billion in hospital charges last year. Data from 173 hospitals was gathered to complete the study.

R.L. Rundle, “Pennsylvania Finds High Toll in Hospital-Acquired Infections”, Wall Street Journal, July 13, 2005, p D4.


Medical journals are experiencing a great deal of criticism of their role as the gatekeepers of scientific findings from medical research. The on-going Vioxx case and a study in the Journal of the American Medical Association (JAMA) published last year highlight the problem. The Vioxx case involves, among many items and issues, the data set from a Vioxx study. The data set was the basis of an article published in a leading medical journal and part of a filing submission to the FDA. Allegations have come from different sources claiming the data sets are not the same, that the results reported in the journal were based on a subset of the data collected during the study and misleading. The data has been analyzed using different statistical tools and the results are tool sensitive. In other words the conclusions depended on the tools used in the analysis.
The JAMA study of 122 medical-journal articles found “65 % of findings on harmful effects weren’t completely reported. It also found gaps in half the findings on how well treatments worked.” The concern of many is the way the results often seem to be slanted and then used in large-scale marketing campaigns. Strong and persuasive arguments are made from very different positions. Sorting it out will not be easy.

A.W. Mathews, “New Protocol Worrisome Ailment in Medicine”, Wall Street Journal, May 10, 2005, p A1.


The results of medical research are being more widely distributed and read by an audience more diverse in knowledge and experience than has been the case historically.
These journal articles are not always easy to understand and it can often be even more difficult to appreciate the implications of the findings for medical practice or treatment. Understanding the studies reported in medical journals is helped by knowing why the study was done, who was studied, the limitations of the study, and the implications of the findings. Things that are important to look for in studies are: Was it a randomized controlled trial? (One group receives a new therapy, a control receives standard treatment or a placebo; subjects are randomly assigned to each arm). Is the study double blinded? (Neither patients nor researchers know who is in which group). Was the sample large? Were subjects followed for a long time? In most cases reading, understanding, and appreciating the implications of medical journal articles is challenging for the lay person. Help is coming from a number of sources. One of the best places to begin is, a new web site designed to help patients understand medical research.

Laura Landro, “The Informed Patient: New Help Making Sense of Medical Research”, Wall Street Journal, June 15, 2005, p D1.


Medicine or drug interactions are frequently addressed when choosing a medication. Taking prescription medications with or without food or before or after meals is often included on an insert or sticky label on the container you receive from your pharmacist. However, different foods can significantly affect the rates of absorption and metabolism of many prescription medications. This in turn can affect the impact the medication has on the condition or disease you are treating as well as on your overall health.

H. Gordon, et. al., “Food-drug Interactions MATTER”, Hematology & Oncology News & Issues, June 2005, p 33.

For information on food-drug interactions see:


H-Pylori infection may be involved in the chronic inflammation that can result in atrial fibrillation, a condition where the heart's two small upper chambers (the atria) quiver instead of beating effectively. This is the same bacteria that when present and eradicated in ITP patients has been associated with clearing ITP. This finding, from a case-control study, was reported in the July issue of Heart. The association between atrial fibrillation and H-Pylori was very strong in patients with persistent atrial fibrillation.

L. Barclay, “Helicobacter pylori May Be Associated With Increased Risk of Atrial Fibrillation”, Heart, 2005; 91:960-961.


Its mosquito season for many readers and strategies to avoid the little critters can be very useful. Dr. Andrew Weil recommends wearing light colored, baggy clothing with long sleeves and pants and avoiding strongly scented products. He suggests to not rely too heavily on eating garlic or taking vitamin B-1. There is no solid evidence that either works. As for repellants, most contain the toxic chemical DEET. Dr. Weil prefers products containing geraniol. When the inevitable happens, he suggests a good way to take the itch away is with the Chinese herbal salve Tiger Balm. This product can be found in health food stores.

“Making Mosquitoes Bug Off”, Self Healing, July 2005, p 2.

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