Platelet E-News – October 21, 2002

This e-newsletter is a bi-weekly 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.


  • Uterine Disorder Linked to Autoimmune Disease
  • Check your PC for Spyware
  • Advocacy Update
    • Testing Drugs in Children
    • Dioxin
    • Rare Diseases
    • Autoimmune Diseases Research Plan
    • Contact Info
  • Is maintenance therapy the choice for you (advertisement)



A new study of 3,680 predominantly white women in an endometriosis pain support organization measured the prevalence of their other diseases compared to the general female population in the United States. The women in the support group experienced more autoimmune inflammatory diseases than other women as well as more chronic fatigue, hypothyroidism, and allergic or skin conditions.

Note that the study results may not apply to other ethnic groups, age groups, or women with endometriosis who do not experience the type of pain reported by members of the support group. Past studies have shown that endometriosis may occur as a result of problems with the immune system. Such problems may lead to other diseases.

Read the abstract at


Spyware is a type of program installed on your computer without your consent to gather information about you or your organization. The program will record your mouse clicks and broadcast that information to another computer. Usually it gets onto your PC by hiding behind other software when you download it. Anti-virus software won’t find spyware because it looks like the other software you chose to install.

Luckily, you can check your computer for spyware. If you have a windows machine go to and download a free utility called Ad-Aware. Mac owners can try Spring Cleaning ($50.00) form Aladdin Systems. See for a database listing more than a thousand of these programs.

(From TIME magazine, October 7, 2002)

(I ran Ad-Aware on our PDSA PC’s and was amazed at what I found. I suggest everyone run this software…ed.)




Most drugs prescribed for children have been tested only in adults with the assumption that the drugs’ effect in children would be similar. Rules requiring drug companies to test drugs on children were implemented in 1998. On Thursday, October 17, Judge Henry F. Kennedy, Jr. of the Federal District Court, overturned the ruling saying, “The pediatric rule exceeds the Food and Drug Administration’s statutory authority and is therefore invalid.

The FDA argued that the “correct pediatric dose cannot necessarily be extrapolated from adult dosing information.” This could lead to children receiving inappropriate doses, or as they get older, less effective medicines.

Hillary Rodham Clinton is the chief Senate sponsor of a bill to write the pediatric drug testing requirements into law. The bill was approved by a Senate committee but has not reached the Senate floor.


The World Health Organization (WHO) and the Environmental Protection Agency (EPA) agree that dioxin (toxic compounds that are the byproducts of some natural decomposition and manufacturing processes) can adversely affect human health at lower exposure than previously thought. Some adverse non-cancer effects of dioxin including a weakened immune response can occur at or near levels to which some portions of the general population are now exposed.

The EPA has drafted a Dioxin Reassessment paper. However, the official release of this document has been stalled. On August 1, Congresswoman N. Pelosi (D-CA) and 65 members of the House of Representatives signed and delivered a letter to EPA administration requesting the release of this report.

The current document is available at


On Thursday, October 17, 2002 both the Rare Diseases Act,
and the Rare Diseases Orphan Product Development Act,
passed the Senate. The Bills now go to President Bush for his signature.

These bills will increase rare disease research supported by the National Institutes of Health and the Food and Drug Administration.

Update courtesy of NORD at


The Advocacy Committee of The National Coalition of Autoimmune Patient Groups was successful in gaining strong bi-partisan Congressional support for implementing the NIH Autoimmune Diseases Research Plan. Support included Sens. Kennedy, Harkin, Biden, Boxer, Frist, Stabenow, and Reps. Morella, Waxman, Bilirakis, Brown, Regula, and Lowey.

The Advocacy Committee also worked closely with NIH to accelerate the Research Plan's review. The Plan was forwarded in July to HHS Secretary Thompson's office for final approval. The Committee is aiming for full funding in FY04 with the potential for initial funding in FY03 supplemental appropriations. Funding is dependant on the release of the Research Plan, scheduled for early next year.

See for more information.


Here is information to contact your senator, representative, or the President about any of these issues.

House of Representatives:


White House Opinion Phone (202) 456-1111
White House Fax: (202) 456-2461

For information on advertising in our e-news letter contact us at

This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web:, e-mail:

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