- Report from the American Society of Hematology Conference
- Reduced Stability in Menomune Meningococcal Vaccine
- Liposomal Vincristine
- New Blood (Platelet) Safety Devices
- Melatonin for Refractory ITP
- New Doctor-Patient E-mail Guidelines
- IVIG at Home (advertisement)
- Would You Like to Postpone or Avoid Splenectomy? (advertisement)
REPORT FROM THE AMERICAN SOCIETY OF HEMATOLOGY CONFERENCE
Each year close to 14,000 hematologists from all over the world gather at the American Society of Hematology conference. This year the conference was held December 6-10 in Philadelphia, PA. We were there to hear the latest ITP news and talk to hematologists interested in ITP. I wish we could report a wonderful new treatment that would solve everyone’s platelet woes. It was not to be. We were, however, very encouraged with the interest in the disease and some of the progress made in understanding and treating it.
There were 3,458 posters, constant simultaneous sessions from 7:30 AM to 5:15 PM, and a 521 page education book. Some of the presentations were incredibly obscure. As one researcher said, “There were just too many letters”
Sorting through some of it, we heard researchers report new clinical results using Rituxan, CellCept, Cyclosporine A, CAMPATH, bone marrow transplant and antibiotics to treat H-pylori infection associated with ITP. Of these treatments, Rituxan seemed most promising. There was continued interest in WinRho SDF and IVIg treatments. There was also an increased understanding of the role inflammation plays in eliminating platelets.
Some highlights for us included hearing that hematologists were 1) looking to replace prednisone for the first thing they prescribe for an ITP patient, 2) increasing sensitivity to the fact that many patients are hesitant to have their spleen removed, 3) exploring various options in patient/doctor communication, 4) become more accepting of alternatives by reporting results from Angelica Polysaccharide (a compound extracted from Danggui, a Chinese herb), 5) publicizing the decreased quality of life of ITP patients from the norm.
You can read the ASH abstracts at: http://www.hematology.org/meeting/abstracts.cfm. We will summarize the most important presentations for ITP patients in the Spring edition of The Platelet News.
We are grateful to Nabi Biopharmaceuticals for their restricted education grant that helped fund our conference presence and for making the Corporate Friday Education session available to ITP patients.
REDUCED STABILITY IN MENOMUNE MENINGOCOCCAL VACCINE
Aventis Pasteur Limited is withdrawing single dose vials only of Menomune ™ Meningococcal vaccine because of reduced stability of the serogroup A component after six months of shelf life. This recall applies to patients receiving vaccine since May 16, 2001. Meningococcal vaccine is given to patients who are about to undergo splenectomy because of a splenectomized patient’s increased susceptibility to meningitis. Serogroup A meningococcal disease is rare in North America. The largest and most frequently recurring meningitis outbreaks occur in sub-Saharan Africa.
If you have received this vaccine after May 16, 2001, please contact your physician to determine if you should be re-vaccinated.For more information see:
“Substituting liposomal vincristine for free vincristine in chemotherapy regimen may improve responses in patients with aggressive lymphomas.” The libosomal form of the drug is less toxic than free vincristine and in mouse models was more active than free vincristine. Vincristine is occasionally used to treat ITP.
From Hem/Onc Today, Vol 3, No. 12, December 2002. See www.hemonctoday.com
NEW BLOOD (PLATELET) SAFETY DEVICES
The FDA approved two devices to improve blood safety. One is a leukocyte reduction filter to allow blood centers to process blood faster. The second is a bacterial detection system that detects both gram-positive and gram-negative bacteria in donor and apheresis platelets. The bacterial detection device detects changes in oxygen concentration that are a result of bacterial growth.
From Hem/Onc Today, Vol 3, No. 12, December 2002.
MELATONIN FOR REFRACTORY ITP
Researchers at the National Health Services in Italy tested melatonin in three patients with refractory ITP. All patients had a partial response after one month and a continued response with the treatment. The only reported side-effect was drowsiness.
From American Journal of Therapeutics 2002, 9(6) 524-526.
NEW DOCTOR-PATIENT E-MAIL GUIDELINES
A consortium of national medical societies and malpractice carriers, known as the eRisk Working Group for Healthcare developed guidelines to limit the liability risks of communicating via e-mail. The recommendation is that physicians only conduct e-mail consultations if they have previously established a relationship with the patient. State regulators have recently taken action against services that provide on-line consultations and prescribe medications for patients they have never seen. www.medscape.com/viewarticle/445693
- Drug-dependent Antibodies May Cause Low Platelets
- Health Industry News – 2 Week Free Trial
- Looking Forward to Upcoming Events
- ITP Meetings
- Orphan Disease Act Signed
- Platelet E-news Change
- How much time does your intravenous (IV) therapy take? (advertisement)
DRUG-DEPENDENT ANTIOBODIES MAY CAUSE LOW PLATELETS
Drug dependent antibodies can cause acute thrombocytopenia after the administration of tirofiban or eptifibatide according to a report in the November, 2002 issue of Hem/Onc Today. Tirofiban marketed as Aggrastat by Merck and eptifibatide marketed as Integrelin by Cor Therapeutics are designed to inhibit the action of GPIIb/IIIa receptors on the surface of platelets during the treatment of heart disease.
During a new study by the Blood Research Institute at the Blood Center of Southeastern Wisconsin and the Medical College of Wisconsin a small subset of patients had profound, unexplained thrombocytopenia. After examining this case and other evidence the authors concluded that drug dependant antibodies were responsible for the drop in platelets.
For more information on Aggrastat and to view a video of platelet function go to http://www.aggrastat.com
Low platelet counts have been associated with many drugs. See http://www.itppeople.com/warnings.htm and Dr. James George’s site http://moon.ouhsc.edu/jgeorge/ for a list
HEALTH INDUSTRY NEWS – 2 WEEK FREE TRIAL
The Wall Street Journal has a new on-line Health Industry Edition. You can get two free weeks of access by visiting http://wallstreetjournal.com/health
LOOKING FORWARD TO UPCOMING EVENTS
British ITP Treatment Guidelines
Members of the British Society for Haematology have completed a document outlining standard treatment guidelines for ITP. We anxiously await their publication. They will appear on: http://www.blackwellpublishing.com/uk/society/bsh/
The American Society of Hematology published treatment guidelines in 1996. They are available at http://www.hematology.org/practice/idiopathic.cfm Several hematologists have suggested the ASH guidelines be updated and are seeking funding.
The American Society of Hematology meeting is scheduled for December 6 – 10, 2002 in Philadelphia. We will be there taking notes at the many education and poster sessions as well as hosting a booth. We will report the treatment and research news from the meeting in our newsletter and e-news. See http://www.itppeople.com/calendar.htm and http://www.hematology.org for more information about the meeting.
Transfusion Medicine/Hemostatis Clinical Research Network
The National Heart Lung and Blood Institute, a part of the National Institutes of Health has awarded very large grants to research institutions to study and perform clinical trials in non-malignant blood disorders. This includes ITP. We are anxiously awaiting the list of participants. The members of this network will bring a strong focus to ITP research and clinical trials.
We will be planning more regional meetings during 2003. These will be announced in our e-mails, newsletter, and appear on our calendar page http://www.itppeople.com/calendar.htm. We look forward to meeting more of you, helping you meet others, and providing more opportunities to learn.
ITP Conference 2003
Reserve this date: June 20-22, 2003. Our 2003 conference will be held June 20-22, 2003 at the Radisson Hotel O’Hare in Rosemont, IL near the large airport serving the Chicago area. Drs. James Bussel, John Semple, and Michael Tarantino have agreed to speak. We will be adding to the speaker list and agenda soon. Watch your e-mail and our web site for more information as we continue to plan. We thank Creta, one of our volunteers, for helping us find the conference space. We really value her assistance.
The attendees at our prior conferences learned much from the presentations and had a great time. You can find information about our conferences 2001 and 2002 at http://www.pdsa.org/conference.htm. We hope to see you in June.
ORPHAN DISEASE ACT SIGNED
President Bush signed the Rare Diseases Act and the Rare Diseases Orphan Product Development Act into law. The Rare Diseases Act doubles the budget for the Office of Rare Diseases at the National Institutes of Health and authorizes the office to award grants for clinical research into rare diseases. The Rare Diseases Orphan Product Development Act doubles the funding for the Food and Drug Administration’s Orphan Products Research Grant program. We thank NORD for all their hard work in securing passage of these bills.
Approximately 25 million Americans suffer from at least one of the known 6,000 rare disorders. Rare (orphan) diseases are defined as medical conditions affecting fewer than 200,000 Americans.
PLATELET E-NEWS CHANGE
Beginning with the next issue, the platelet e-news will be sent once a month. We will send periodic announcements between the main issues. This will allow us to separate some of our announcements from the news items and have more flexibility in our timing.
- New Medical Search Engine
- Hospitals Get Green
- Vaccine Injury News
- The Platelet News – New Download Version
- Stem Cell Blood Booster
NEW MEDICAL SEARCH ENGINE
Medical Matrix is a new search engine designed for the hematology/oncology professional from the publishers of “Hem/Onc today”. You don’t have to be a physician to use it. The search engine has links to hundreds of helpful sites rated by the publishers and an all-site search that makes it easy to find information.
You can get a free 24 hour trial pass at www.medmatrix.org.
HOSPITALS GET GREEN
The hospital industry is becoming more aware that hospital patients are exposed to a host of dangerous materials including dioxins, phthalates, mercury and the volatile organic compounds (VOCs) found in many solvents and paints. These dangerous substances can be found in the walls, carpets, and sometimes in the IV bags delivering the problem substances directly to the blood. When disposable devices made from PVC are incinerated cancer-causing dioxin fumes are released into the air.
Knowing these hazards, hospitals from Beth Israel Medical Center in New York to Good Samaritan Hospital in Portland Oregon are changing their policies and calling for no PVC and low or no VOCs in their building products and medical equipment. They are including other health promoting environments such as gardens in their designs.
The American Society of Healthcare Engineering released a statement calling for environmental friendly construction practices. The U.S. Green Building council has begun discussing construction guidelines for health care facilities.
If you feel the hospital you go to can provide a healthier environment contact these organizations. They may be able to help.
- Health Care Without Harm: www.noharm.org
- Canadian Coalition for Greener Health Care: www.greenhealthcare.ca
- Healthy Building Network: www.healthybuilding.net
- Clean Med Conference: www.cleanmed.org
- Sustainable Hospitals: www.sustainablehospitals.org
VACCINE INJURY NEWS
In the 1980’s congress established the Vaccine Immunization Compensation Program (NVICP) to protect doctors and vaccine makers from lawsuits and to provide compensation to parents and children for catastrophic vaccine injuries.
In a recent ruling Judge Samuel Kent ruled that individuals who qualify as claimants under NVICP must first file petitions in the Vaccine Court. The Vaccine Court will only consider claims presented within the mandated limit of 36 months from the onset of the first symptoms of injury or in death cases within 24 months of the date of death or 48 months of the date of injury, whichever comes first. This ruling underlines the fact that parents must act quickly to preserve their rights and those of their child.
There is a bill pending in congress, HR 3741, designed to help more children get access to the $1.7 billion in the trust fund that has been set aside to help vaccine injured children and adults.
For more information on NVICP see: http://www.hrsa.gov/osp/vicp/index.htm
For information on vaccine decisions: http://www.909shot.com
Note: According to researchers in the UK, one in every 22,300 MMR vaccinations will result in admission to a hospital for ITP.
THE PLATELET NEWS – NEW DOWNLOAD VERSION
Now you download copies of all of the issues of The Platelet News as .pdf files. The Platelet News is filled with helpful articles designed specially to help those with ITP. The newsletters are sent four times a year to members of PDSA. Often patients who are newly diagnosed want information quickly. By placing the newsletters in our store, everyone can have access to all of the issues.
The cost per issue is $5.00. You can find a list and purchase the download .pdf versions at http://www.pdsa.org/newsletter.htm.
STEM CELL BLOOD BOOSTER
Umbilical cord blood is a prized source of stem cells that can replace the diseased bone marrow of people with leukemia and other illnesses. Unfortunately umbilical cords often don’t contain enough blood for a viable transplant of stem cells that, like marrow cells, can produce new blood cells of various types. Scientists now report that cord blood stem cells proliferate more rapidly when the blood is cultured with a protein called Delta-1 and a combination of blood enhancers.
When these treated cells were transplanted into bone marrow of mice, they began to rebuild the store of red and white blood cells (platelets, too?). Some stem cells found their way to the thymus to begin transformation of T-cells.
For the full text research articles see: http://www.jci.org/cgi/content/full/110/8/1165
While we don’t know the implication of this research specifically for ITP, we do know that bone marrow transplants are sometimes used as a treatment for very difficult cases and that ITP is a T-cell mediated disease.
- Uterine Disorder Linked to Autoimmune Disease
- Check your PC for Spyware
- Advocacy Update
- Testing Drugs in Children
- Rare Diseases
- Autoimmune Diseases Research Plan
- Contact Info
- Is maintenance therapy the choice for you (advertisement)
UTERINE DISORDER LINKED TO AUTOIMMUNE DISEASE
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 http://humrep.oupjournals.org/cgi/content/abstract/17/10/2715
CHECK YOUR PC FOR SPYWARE
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 lavasoftusa.com and download a free utility called Ad-Aware. Mac owners can try Spring Cleaning ($50.00) form Aladdin Systems. See SpyChecker.com 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.)
TESTING DRUGS IN CHILDREN
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 http://cfpub.epa.gov/ncea/cfm/dioxin.cfm
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 www.rarediseases.org
AUTOIMMUNE DISEASES RESEARCH PLAN
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 www.aarda.org for more information.
Here is information to contact your senator, representative, or the President about any of these issues.
House of Representatives: http://www.house.gov/writerep/
White House Opinion Phone (202) 456-1111
White House Fax: (202) 456-2461
- ITP Docs Win Awards
- Research on Cell Death and Inflammation
- Summer/Fall Issue of The Platelet News In the Mail
- Arthritis Sufferers Find Relief Through Prayer
- Fall Allergy Relief
ITP DOCS WIN AWARDS
The American Society of Hematology awarded Barbara Alving, MD their 2002 Outstanding Service Award. Dr. Alving played a major role in establishing the new Transfusion Medicine/Hemostasis Clinical Research Network, a group of up to16 clinical centers and one data coordinating center devoted to testing promising treatments for ITP and other non-malignant blood disorders. The grants will total $6 million per year for 5 years with the possibility of extension. Now the Deputy Director of the National Heart, Lung, and Blood Institute of the National Institutes of Health, Dr. Alving has been very supportive of PDSA. We are thrilled that her hard work on behalf of lesser known blood diseases was recognized with this honor.
Professor John Lilleyman was awarded a Knighthood by Her Majesty the Queen of England in the 2002 Jubilee Honours List for recognition of his work as President of the Royal College of Pathologists, notably his leadership during the Alder-Hey scandal. Sir John Lilleyman has a distinguished career that includes ITP research and editing hematology publications. He is a medical advisor for the ITP Support Association in the UK and spoke at their conference in April where he was very generous in answering our questions and providing a copy of the notes of his talk. We at PDSA join the ITPers in the UK in congratulating Sir John on this recognition of his truly great accomplishments.
RESEARCH ON CELL DEATH AND INFLAMMATION
In ITP, the platelets are eliminated from the body by macrophages, a type of white blood cell. Several recent studies show that defective removal of the dead cells can trigger inflammation and autoimmune diseases. A key issue facing researchers is how the body discriminates between ready-to-die cells and healthy cells. This ‘eat-me’ message to the macrophages may be signaled by the appearance of phosphatidylserine on the cell surface. Researchers at the University of Edinburgh noted that healthy cells may actually fend off macrophages. This area of study is important for us if researchers learn to curb the rapid destruction of seemingly dying cells (platelets, for us).For more information see:
SUMMER/FALL ISSUE OF THE PLATLET NEWS IN THE MAIL
The Summer/Fall issue contains articles on the survey of non-traditional treatment of ITP, treatment payment tips, ITP registry, success stories, ITP conference 2002 report, answers to your questions, abstracts, ITP calendar, and more. To receive your copy, join PDSA before October 15. Go to www.pdsa.org/joinus.htm for more information.
ARTHRITIS SUFFERERS FIND RELIEF THROUGH PRAYER
Researchers at Georgetown University took 44 volunteers who suffered from rheumatoid arthritis, an autoimmune disease and separated them into groups. Some patients received ‘hands-on’ prayer, others had knowledge they were being prayed for, some had no knowledge they were the object of prayer. Participants who received ‘hands-on’ prayer showed marked improvement, but those who received distant prayer or did not believe they were being prayed for did not show any statistical improvement in health or relief from pain.
See: http://www.awesomepower.net/pogdocs/smj2000matthews.pdf for the study report.
Note that 45.83 percent of the people who responded to our survey of non-traditional treatments of ITP reported some benefit from prayer with 24.87 reporting sustained benefit. See www.itppeople.com/surveyres/ for results from our survey.
FALL ALLERGY RELIEF
When you think of fall do you think of a stuffy nose and not brightly colored leaves? A neti pot can help. It is a small container that you fill with warm salt water. Then you pour the warm salt water over your sinuses. The salt rinse helps open the sinus passages and prevent bacteria from multiplying.
You can purchase a ceramic neti pot or its cousin the plastic narial nasal cup from us in the Platelet Store, http://www.itppeople.com/store/things.htmhttp://www.itppeople.com/store.
The cost for our plastic or ceramic versions is $17.95 plus shipping.
Join me and hundreds of satisfied and healthier ITP people in using this simple, healthy technique.
"Of 85 patients with chronic post nasal drip…were 79 cases that were markedly improved (by daily irrigation at home) so that symptoms ceased and further treatment was unnecessary." - Max Unger, MD, from an article in The Eye, Ear, Nose and Throat Monthly.
See further testimonials on our store pages.
- Less Sleep – More Disease
- Infections and the Rise of Autoimmune and Allergic Diseases
- A Patient Guide to Clinical Trials
- Computer Virus Epidemic
- Clarification – Genes and ITP
- If you have chronic ITP - did you know you have treatment options (advertisement)
LESS SLEEP – MORE DISEASE
Several recent studies show that reducing sleep to 6.5 or fewer hours for successive nights causes potentially harmful metabolic, hormonal, and immune changes. Specifically, researchers found increased insulin resistance, a condition that can lead to diabetes, increased weight gain, increased concentrations of stress hormones, and increased inflammatory response. These findings are preliminary, however they do point to an area of study that could have an effect on long term health.
From Science News 9/7/02 Vol. 162
INFECTIONS AND THE RISE OF AUTOIMMUNE AND ALLERGIC DISEASES
The incidence of allergic and autoimmune diseases has been rising steadily in developed countries in the past three decades. The incidence varies on a North / South gradient. Those countries further from the equator have more cases. This geographic variation could be attributed to socioeconomic differences, environmental differences, exposure to sunlight, or a combination of all of these and other factors.
In several studies, researchers noted that there was an increase in autoimmune diseases for both people and research animals raised in more sterile environments that limited experience with infectious diseases during early development. The irony is that researchers may now look for new ways to introduce benign infectious diseases because of the benefits they seem to confer in reducing the later onset of allergic and autoimmune diseases.
From: The Effect of Infections on Susceptibility to Autoimmune and Allergic Diseases, Jean-Francois Bach, M.D., D.Sc. New England Journal of Medicine Vol. 347: 911-920, September 9, 2002 Number 12.
You can purchase the article for $10.00 at www.nejm.org
A PATIENT GUIDE TO CLINICAL TRIALS
Considering joining a clinical trial for ITP? Want to know more about how clinical trials work? Here’s a must read. “Should I Enter a Clinical Trial? A Patient Reference Guide for Adults with a Serious or Life-Threatening Illness” explains the objectives, risks, benefits, and implications of a clinical trial. Read it. Discuss with your doctor. Make more informed decisions.
The guide is available FREE at - http://www.ecri.org/documents/bctoc2.html
You can find a list of ITP clinical trials at http://www.itppeople.com/clinical.htm
COMPUTER VIRUS EPIDEMIC
Some of you have reported that you’ve received messages from us containing a computer virus. We did not send these messages. They are randomly generated by a virus on someone else’s computer that places a random e-mail address in the ‘From’ portion of the message. We scan the messages we send and receive and frequently check our computers for virus infections.
We receive about 20 virus filled messages a day that are automatically deleted by our virus protection software. We know the people who send these to us and others are unaware this is happening. Because the ‘From’ portions of the e-mails are erroneous, there is no way to directly identify where these messages are originating.
The viruses that are most problematic to us and others have an inappropriate subject, an introduction of a few sentences and an attachment that contains the virus. Some messages purport to contain software that repairs viruses in which the attachment actually contains the virus.
We have a large electronically linked ITP community. It is unfortunate our energies are devoted to dealing with those whose intent is to create problems and not solve them.
If you have not done so, please check your computer for a virus infection. You can purchase virus protection software from www.norton.com and other vendors.
CLARIFICATION – GENES AND ITP
The 9/9/02 version of the e-news headline stated, “Gene Linked to ITP”. According to John Semple, PhD, “The paper in Blood did not find a gene associated with ITP. It simply showed that the antibodies use a narrow array of V-region gene usage. The somatic mutation studies are important as they formally prove that ITP is a T cell mediated pathogenesis.”
- Back to school health tips
- Advocacy Update
- Gene linked to ITP
BACK TO SCHOOL HEALTH TIPS
We've heard from several parents noting a disproportionate number of children with ITP in their schools. Some patients report their platelets dip when they are exposed to pesticides or other chemicals. Back to school or not, here are some helpful tips.
--Get the Environmental Protection Agency's new brochure "Protecting Children in Schools from Pests and Pesticides" to use in encouraging school officials to adopt the least toxic pest management. (Call 800-490-9198, document number EPA-735-F-02-014) or see www.epa.gov/pesticides/ipm.
--Avoid polyvinyl chloride (PVC) or vinyl clothing, shoes, and school supplies. PVC is a known carcinogen, can damage organs, and suppress the immune system. Soft vinyl contains phthalates which, in addition to effecting sexual development, are considered a probable carcinogen. Test by Greenpeace found toxic heavy metals, lead and cadmium in vinyl backpacks and raincoats. See www.childenvironment.org
The advocacy group of the American Autoimmune Related Diseases Association (AARDA), of which PDSA is a member, has been working to get congressional funding to implement the Autoimmune Diseases Research Plan of the National Institutes of Health (NIH). The goal is to get full funding (about $450 million) in FY 2004 with initial funding in FY2003, if possible. The plan is in review by the Secretary of Health and Human Services. T. Harkin (D-IA), B. Boxer (D-CA), E. Kennedy (D-MA) and C. Morella (R-8-MD) have proposed funding the Research Plan in various bills. The Autoimmune Diseases Research Plan was requested in Title XIX of the Children's Health Act of 2000 (P.L. 106-310). See www.aarda.org for more information.
Rare Diseases research and development
H.R. 4014 (the Rare Diseases Orphan
Product Development Act) sponsored by M. Foley (R-FL), was successfully voted out of committee by unanimous consent. H.R. 4013 (the Rare Diseases Act) sponsored by J. Shimkus (R-IL) is already on the calendar for a vote in the House of Representatives. It is our hope that both H.R. 4013 and 4014 will be brought to the full House for a vote within the next two weeks. This update from NORD. See www.rarediseases.org for more information.
Please contact your legislative representatives encouraging their support of these important initiatives.
GENE LINKED TO ITP
"…the development of platelet-reactive antibodies associated with ITP is driven by an encounter with diverse platelet antigens through the clonal expansion of B-cells…The extraordinarily high usage of the VH3-30 heavy-chain gene in these patients has implications for the pathogenesis, diagnosis, and management of chronic ITP. " report researchers at the University of Pennsylvania and the Weill Medical Center of Cornell University in the August 15 issue of Blood (Blood. 2002;100:1388-1398) See www.bloodjournal.org for more information.
Join PDSA on-line at www.pdsa.org/joinus.htm, send a check to PDSA, P.O. Box 61533, Potomac, MD 20859, fax your donation to 301-294-3125, or call us toll-free at 1-87-PLATELET. Just list the additional copies you select in the notes section of your on-line order or on your mailed order form.
- Tripterygium Extract Effective, Safe for Rheumatoid Arthritis
- Acrylamide: The Fries Have It
- States Grant Herb Doctors New Powers
TRIPTERYGIUM EXTRACT EFFECTIVE, SAFE FOR RHEUMATOID ARTHRITIS
The Chinese remedy Tripterygium wilfordii Hook F (TWHF) extract was well tolerated and offered benefit to patients with refractory rheumatoid arthritis, according to a study reported in the July issue of Arthritis & Rheumatism. Of the 35 patients in the study 8 of 10 in the high dose group, 4 of 10 in the low dose group and none of the 12 of the placebo group showed an improvement. Extracts of TWHF have been widely used in China to treat a variety of autoimmune and inflammatory diseases.
Arthritis Rheum.2002;46:1735-1743 as reported in Medscape
ACRYLAMIDE: THE FRIES HAVE IT
Researchers in Sweden found acrylamide in some starch-based foods such as potato chips, french fries, cookies, cereals and bread above the level given in the World Health Organization's Guideline Values for drinking water. Unlike preservatives that are added to foods, acrylamide forms as a result of unknown chemical reactions during high-temperature baking or frying.
While acrylamide is known to cause cancer and nerve damage in laboratory animals, no studies have been done to determine the relationship between acrylamide and cancer or other problems in humans.
The Center for Science in the Public Interest commissioned the Swedish government to test the level of acrylamide in a small sampling of U.S. Foods. The results ranged from 1 microgram/serving of El Paso Taco Shells to 72 micrograms/serving for McDonald's French Fries. The EPA allows no more than 0.12 micrograms in an 8-oz. glass of water.
More research is required to determine how acrylamide is formed during the cooking process and the relevancy to human cancers.
For more information see: http://www.who.int/inf/en/pr-2002-51.html and http://www.cspinet.org/new/200206251.html
STATES GRANT HERB DOCTORS NEW POWERS
Twelve states now license naturopath doctors while seven others have active pro-licensing efforts. While the number of trained naturopaths is small, it has doubled over the past five years. Naturopath doctors don't have conventional medical degrees and usually specialize in treating diseases with vitamins, herbs or other supplements. In some states, medical associations have tried to block licensing of naturopathic doctors suggesting that naturopathic medical schools don't provide enough training.
States that license naturopaths include: AL, AZ, CT, HI, KS, ME, MT, NH, OR, UT, VT, WA. States with active licensing efforts include: CA, NY, FL, ID, NC, NM, PA.
Washington Post, August 22, 2002
- New Medical Search Options
- T-Shirt Sale
- NIH Budget Approved
- Phthalate Warnings
- Co-Sponsors Wanted for Orphan Disease Acts
- How much time does your intravenous (IV) therapy take? (advertisement)
NEW MEDICAL SEARCH OPTIONS
The new HighWire Portal allows you free access to abstracts from the 336 HighWire Journals as well as the abstracts in Medline’s 4,500 journals. You can sign up for free alerts to new content. There is a fee for some of the full text of the articles.
Alltheweb, a new search engine based in Oslo, Norway, indexes more pages than any other site (2.1 billion). Unlike other search engines, Alltheweb tries to decipher the intent of the query by analyzing language patterns and identifying common phrases. Alltheweb also updates its pages more frequently than other search engines.
NIH BUDGET APPROVED
The Senate Appropriations Committee approved its fiscal year 2003 Departments of Labor, Health and Human Services and Education Appropriations bill Thursday, July 18. The funding recommendation included $27.3 billion for the NIH, a 15.7% increase above FY 2002 and the final installment of the five-year plan to double NIH’s budget between FY 1999 and FY 2003.
The recommendation includes $2.8 billion for the NIH’s National Heart Lung and Blood Institute (NHLBI), $43.6 million more than the budget request and $259.8 million more than the FY 2002 appropriation. This amount includes funds to be transferred from the Office of AIDS research.
The bill includes the following comment: “Blood disorders - The Committee commends the NHLBI for its actions to establish a Transfusion Medicine/Hemostasis Clinical Research Network…” This includes ITP research.
You can view the entire appropriation on-line at
From ASH NewsLink July 31, 2002 www.hematology.org
The Food and Drug Administration (FDA) issued a statement last month recommending health-care providers limit male fetuses and boys’ exposure to di-2-ethylhexyl-phthalate, a common softener in medical devices made of polyvinyl chloride.
Phthalates are used as solvents and to make plastics more flexible. They’re commonly found in food wrap, paint, medical supplies, pesticides and nail polish. Recent animal tests have shown that the chemicals can damage the male reproductive system.
Researchers at the Centers for Disease Control and Prevention in Atlanta have detected relatively high quantities of dibutyl phthalate in the urine of young women. In an independent study by three consumer lobbying groups, 52 of 72 cosmetic products tested contained a least one of the phthalates. The groups recommend that women of childbearing age avoid using these products.
From Science News Vol. 162, July 20, 2002
CO-SPONSORS WANTED FOR ORPHAN DISEASE ACTS
More co-sponsors are wanted for upcoming legislation. To date, 20 senators have become co-sponsors of the Rare Diseases Act of 2001 (S. 1379), a bill that would encourage the development of new and better rare-disease diagnostics and treatments. More than 50 members of the House of Representatives are co-sponsoring two companion bills, the Rare Diseases Act of 2002 (H.R. 4 013) and the Rare Diseases Orphan Product Development Act of 2002 (H.R. 4014).
For a complete list of co-sponsors see http://www.rarediseases.org/nord/washington/cosponsors/
If your congressmen have not signed on as co-sponsors, you can contact them directly to encourage their participation.
From National Organization for Rare Diseases www.rarediseases.org
- New drug being tested for lupus - ITP next?
- New registry for children with ITP
- Fun run to benefit PDSA
- Meet others with ITP - Name Exchange Program
- Help with health insurance complaints
- Is maintenance therapy the choice for you (advertisement)
NEW DRUG BEING TESTED FOR LUPUS - ITP NEXT?
Human Genome Sciences (HGS) received approval Nov. 1, 2001 to begin testing LymphoStat-B ™ as a potential new treatment for autoimmune diseases. LymphoStat-B ™ is a monoclonal antibody that works by inactivating a natural immune stimulator in B cells. HGS is proceeding with a Phase 1 clinical trial for patients with lupus to determine the safety and dose for adult patients with this disease. In the future, the drug may be tested in patients with other autoimmune diseases, including ITP.
For more information see: http://www.hgsi.com/products/LSB.html
(We thank the vigilance of the readers of our discussion group for posting a reference to this information)
NEW REGISTRY FOR CHILDREN WITH ITP
The Intercontinental Childhood ITP Study Group (ICIS) has initiated two registries for children with ITP. Registry II follows bleeding patterns over time. It will further the understanding about the progression of ITP and help determine those children at high risk for serious bleeding. The Splenectomy Registry will track the responses, management and safety of splenectomy in children.
For more information see: http://www.unibas.ch/itpbasel/
If your child is between the ages of 4 months and 20 years and newly diagnosed or you are considering a splenectomy for your child, contact your physician about participating. The registry information will be a big help to researchers studying ITP.
FUN RUN TO BENEFIT PDSA
Help ITP research. We hope some of you plus your friends and family can join the runners on September 28 for a 5K run/walk at Mountwood Park in Parkersburg, WV. Chris Dower has organized this annual race and named PDSA as recipient of the contributions this year. We appreciate his thinking of us.
MEET OTHERS WITH ITP - NAME EXCHANGE PROGRAM
Would you like to meet others with ITP or find an ITP pen pal? Our Name Exchange Program is designed to help you. Twice a year, in January and July, we distribute the names, addresses, and e-mails of members who elect to participate to everyone on the list. We've heard from some of our members that they've met some great new friends this way.
We will be preparing the July list for distribution soon. If you want to be on the name exchange list you must be a member of PDSA (contribute $25 or more per year). If you are not a member, you can join at http://www.pdsa.org/joinus.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859.
If you are a member and would like to participate, just send us an e-mail giving us permission to use your name, address, and e-mail. If you are a member and are currently participating in our Name Exchange Program, you don't need to contact us.
Note: This is a closed, confidential list sent only to members who have given their permission to distribute the information and used only for personal contact.
HELP WITH HEALTH INSURANCE COMPLAINTS
Twenty-one states have ombudsmen who handle health insurance complaints for no charge. In Maryland, the service is under the attorney general's office. If you have an insurance reimbursement issue, check with your state offices to find information about this service in your area.
IS MAINTENANCE THERAPY THE CHOICE FOR YOU?
If you have chronic ITP, you have treatment options other than splenectomy.
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. Clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!1,2 Continuing therapy allowed patients more time for response and gave them time to improve on their own.2
WinRho SDF® has not been associated with some of the troublesome side effects sometimes encountered with long-term corticosteroid treatment. Compared with other IV therapies, it’s more convenient—the complete injection time is only 3 to 5 minutes approximately once a month.
Talk with your doctor to find out more about maintenance therapy and whether WinRho SDF® is right for you.
1. Bussel JB, Graziano JN, Kimberly RP, Pahwa S, Aledort LM. Intravenous anti-D treatment of immune thrombocytopenic purpura: analysis of efficacy, toxicity, and mechanism of effect. Blood. 1991;77:1884-1893.
2. Cooper N, Woloski BMR, Fodero EM, et al. Does treatment with intermittent infusions of intravenous anti-D allow a proportion of adults with recently diagnosed immune thrombocytopenic purpura to avoid splenectomy? Blood. 2002;99:1922-1927.
Please go to www.nabi.com/products/WinRhoCurrent.pdf for prescribing information for WinRho SDF®.
WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.
- New ITP clinical trial - daclizumab
- Positive thoughts can help your immune system
- ITP conference tapes and CD's
- Gold induced thrombocytopenia - new finding
- If you have chronic ITP - did you know you have treatment options (advertisement)
NEW ITP CLINICAL TRIAL - DACLIZUMAB
Hematologists at the National Institutes of Health are currently seeking adult patients with Immune Thrombocytopenia (ITP) to participate in a pilot clinical study using a new monoclonal antibody called daclizumab. Daclizumab acts by inhibiting activated T lymphocytes and is extremely well-tolerated; platelet responses as well as the ability to decrease or discontinue other medications (such as prednisone) will be assessed. The treatment is free and is given on an outpatient basis over an eight week period; patients may recive some infusions of the medication through their local hematologist. In addition, two follow-up visits at the NIH once the treatment has ended are required. Splenectomy is not a requirement for inclusion in the study. Participants must be 18 years of age or older, not pregnant or breast-feeding, and able to give informed consent. If interested, please contact Dr. Patrick Fogarty via Donna Jo McCloskey, R.N. at (301) 496-5150.
(For more information on daclizumab see: http://www.rocheusa.com/products/zenapax/pi.html)
POSITIVE THOUGHTS CAN HELP YOUR IMMUNE SYSTEM
Thoughts can cause the release of hormones that bind to your DNA and affect how your genes interact with your the immune system, according to a June 21 article in the Wall Street Journal. These subtle changes in gene expression can now be measured using microarray analysis and 'gene chips'.
In our recent survey of "Non-traditional treatments of ITP" 41% of the people who used positive thinking felt it helped their platelet counts. See our preliminary survey results at http://www.itppeople.com/surveyres/
ITP CONFERENCE 2002 TAPES AND CD'S
We received rave reviews from participants, speakers, and sponsors for our recent ITP conference held June 21-23 in San Diego, CA. We know that many of you are ill or were unable to attend for other reasons so we taped the entire conference. The video tapes and audio CD's are being prepared and will be ready near the end of July. If you order them now, we can process your order and ship them as soon as they arrive.
The speakers relied on the information on their slides during their presentations. We recommend purchasing the video tapes so you can see what was on the screen.
There are approximately 10 hours of information. The video tapes are $60.00 plus $5.00 shipping and handling if sent to the US or Canada, $10.00 if shipped elsewhere. The audio CD's are $30.00 plus $4.00 shipping and handling, US/Canada, $6.00 elsewhere.
To order, go to http://www.pdsa.org/conference.htm or send a check or credit card number to PDSA, P.O. Box 61533, Potomac, MD 20859.
We are grateful to Jeff Cooper of Syndikast (www.syndikast.com) for taping our conference.
Our conference was sponsored in part by Nabi, The DAISY Foundation, and Genentech/IDEC. Our sponsors help make our conference possible. We appreciate their support.
GOLD INDUCED THROMBOCYTOPENIA - NEW FINDING
Glycoprotein V (on platelets) seems to be the antibody target for patients with gold-induced thrombocytopenia, according to an article in the July 1 edition of the journal, BLOOD. To reach their conclusions, researchers in the UK, Netherlands, and the USA studied patients with rheumatoid arthritis on gold therapy who also had ITP.
Glycoprotein V autoantibodies are found in 10% to 20% of patients with ITP and are particularly prevalent in children whose ITP is associated with varicella infection and in multi-transfused patients with bone marrow failure.
Unfortunately the researchers did not provide information on the impact, if any, of environmental exposure to gold, ex. gold jewelry or gold tooth fillings.
See http://www.bloodjournal.org for more information.
- Register for our conference by June 18
- New blood cleanser approved in Europe
- New diabetes research holds promise for other autoimmune diseases
- Cyclosporin A gets a new look
REGISTER FOR OUR CONFERENCE BY JUNE 18
If you plan to come to our conference, please register by June 18 so we can be sure we have enough food, chairs, and other things we need to make everyone comfortable.
Our conference will be held June 21-23, 2002 at the Marriott Mission Valley in San Diego, CA. For more conference information and to register, go to http://www.pdsa.org/conference.htm.
Conference sponsors include the DAISY Foundation, Genentech/IDEC, Nabi and others. We rely on our sponsors to help make our ITP conference possible. We appreciate their support.
NEW BLOOD CLEANSER APPROVED IN EUROPE
Cerus Corporation and Baxter International won European approval for a screening system that improves the safety of platelet transfusions. The system uses ultraviolet light to eliminate rare transmissions of HIV, hepatitis and other viral and bacterial infections not currently caught by other screening measures. The corporations hope to win US approval to use the system to screen blood platelets by early next year.
For more information see http://www.baxter.com/utilities/news/releases/2002/06-04-02intercept.html
Also reported in the Wall Street Journal, June 5, 2002.
NEW DIABETES RESEARCH HOLDS PROMISE FOR OTHER AUTOIMMUNE DISEASES
Researchers at Columbia University and the University of California have completed a phase I/II clinical trail of anti-CD3 monoclonal antibody that helped patients with type 1 diabetes reduce their need for insulin without debilitating side effects, according to recent articles in The New England Journal of Medicine and TIME magazine. Type 1 (juvenile-onset) diabetes is an autoimmune disease where the body destroys the insulin-secreting islet cells of the pancreas. The treatment works more selectively and requires a shorter treatment period than other immunosuppressive drugs. The good news for us is that this treatment may hold promise for other autoimmune diseases. The next disease on their research list is a kind of autoimmune arthritis associated with psoriasis.For more information see:
- http://www.ucsf.edu (press releases)
CYCLOSPORIN A GETS A NEW LOOK
About 83% of patients in a study at the University of Modena, Italy, responded positively to relatively low doses of cyclosporine A (CyA) according to a study published in the journal Blood and recounted in Hem/Onc Today. Giovanni Emilia, MD and his colleagues studied the effects of CyA on 12 patients with severe, refractory, chronic ITP. The study reported that clinical improvements were sustained in at least half the patients after they stopped taking the drug. Other patients continued on a low-dose treatment without major side effects.
See: Blood, 15 February 2002, Vol. 99, No. 4, pp. 1482-1485, Hem/Onc Today, Vol. 3 No. 6, p. 1.For more information go to:
Our Maryland office will be closed June 20 - June 25 for our conference. Our next e-news will be sent July 1.