Contents:
The March 28, 2002 edition of the New England Journal of Medicine contains a 21 page review article on ITP by Douglas Cines, M.D. and Victor Blanchette, M.B., B.Chir. It includes sections on physiology, genetics, measuring platelet antibodies, initial and subsequent disease management, splenectomy, approaches to chronic cases, ITP and pregnancy, and other topics.
Our favorite quote is in “The Patient’s Perspective” section: ”The Internet has become both a source of quixotic remedies and an important resource enabling patients to find expert care and to receive support from other patients.”
We have ordered 100 copies of the article and will make them available for $5.00 shipping and handling as soon as we receive them. We thank Dr. Cines and the University of Pennsylvania for helping us with this.
You can download the ITP review article for $10 at www.nejm.org.
The American Autoimmune Related Diseases Association, Inc. (AARDA) is leading an initiative to secure additional NIH funding for autoimmune diseases. This includes ITP. In 2001, congress passed legislation requesting that the NIH produce a national strategic plan for autoimmune research. According to NIH estimates the plan will require funding of $400 million in addition to the $456 million already allocated to autoimmune research.
AARDA is organizing a major lobbying effort to help assure this additional research money becomes available. PDSA is a member of the National Coalition of Autoimmune Patient Groups participating in the lobbying effort.
You can help, too, by writing or talking to your legislators. Visit AARDA’s web site at http://www.aarda.org for more information.
The alternative health panel, commissioned by President Bill Clinton two years ago and composed of 20 members from various medical disciplines, finalized its report in mid March. The verdict: “spend more money on research into complementary and alternative medicine (CAM), better educate and regulate practitioners of these therapies, publicize the risks of certain CAM treatments and expand insurance coverage to make CAM affordable to more Americans.”
CAM continues to be controversial and two of the panel’s members issued dissenting reports.
Washington Post, March 19, 2002.
Note: Dr. Stephen Groft, the executive director of the panel, is on leave from his post as the director of the Office of Rare Diseases at the NIH. He is familiar with ITP and some of our CAM success stories.
The FDA issued a voluntary recall of two lots of Bayer Corporation’s IVIg product, Gamimune, due to a discovery of product tampering. Bayer initiated a voluntary recall of lots 648X078, recalled February 1 and lot 648X062, recalled March 14, 2002. Bayer indicated that the tampering problem is limited to those recalled lots.
Note that there is no cause for alarm with using IVIg in general and that Bayer is doing everything it can to assure the quality of its product.
For more information go to http://www.fda.gov/cber/infosheets/bayigiv032002.htm
Additional Fax Number – We found that some people were having trouble reaching us by fax. We have an additional fax number, (301) 294-3125. We will continue to receive faxes at 1-87-PLATELET, (301) 294-5967.
UK Conference – Joan and Buzz attended the ITP Support Association’s Conference in the UK on April 6. It was a great experience to meet Shirley Watson, their founder and chief administrator, talk to some of our UK members, and learn about the similarities and differences in treatment philosophies between the UK and the US. We’ll publish a report in our next regular newsletter.
ITP Conference in San Diego – Ron Strom, one of our volunteers, created a great conference poster for our upcoming ITP Conference in San Diego. We plan to distribute these to hospitals and large hematology practices in Southern California and other areas. If you live near a hospital or are a patient at a large hematology practice and would like to help us by distributing a poster, just reply to this e-mail with your name and mailing address or the name and address of the hospital or medical practice and we’ll send a poster.
The ITP Conference 2002 will be held June 21-23 at the San Diego Marriott Mission Valley, San Diego, CA. For more information and to register go to http:www.pdsa.org/conference.htm.
If you have chronic ITP, you may be receiving IVIG that may require 4 to 6 hours administer.
There is an alternative treatment with more convenient dosing. WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. With WinRho SDF®, your treatment would take only 3 to 5 minutes per injection. That could give you more time to get out and enjoy the things you love doing.
Talk with your doctor to find out if WinRho SDF® is right for you.
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.
IgG America is a national specialty pharmacy organization that provides immune globulin/WinRho SDF services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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From our e-mails and survey responses we know that many of our readers find a spiritual connection helpful in addressing their ITP. The Center for the Study of Religion/Spirituality and Health - Duke University (http://garcia.geri.duke.edu/religion) has published a new web site that illustrates research on the subject.
Other spirituality web sites include:
The George Washington Institute for Spirituality and Health - George Washington University
http://www.gwish.org
IDEC Pharmaceutical Company plans to submit an Investigational New Drug application (IND) to the Food and Drug Administration (FDA) for Rituxan as a treatment for ITP. An IND is a request for authorization from the FDA to administer an investigational drug or biological product to humans. Rituxan was the first monoclonal antibody approved for the treatment of non-Hodgkin's lymphoma. There have been several small clinical trials where Rituxan has demonstrated a potential for helping patients with ITP. With the approval of an IND for ITP, IDEC and their partner Genentech can conduct a large Phase 3 clinical trial for ITP patients.
Related sites:
RepliGen, a Massachusetts company, has initiated a phase 1/2 open label, dose escalating clinical trial to evaluate the safety and efficacy of CTLA4-Ig in patients with refractory ITP in the United Kingdom. CTLA4-Ig is a genetically engineered human antibody that temporarily disables T-cells. RepliGen chose ITP for its clinical trail because the treatment's efficacy is easily measured by a platelet count. The clinical trial is being conducted by Dr. Drew Proven at the Royal London Hospital.
For more information see;
http://www.repligen.com/Research/CTLA4/HomePage.html
We're looking for an ITP parent and ITP teen to round out the people for our patient panel for our ITP Conference 2002. If you have an interesting story you feel would help others, e-mail a synopsis to pdsa@pdsa.org. The patient panel is scheduled for Sunday morning, June 23, 2002. Patient panel members receive a complementary conference registration. (If you've already registered, we'll send a refund)
Our ITP Conference 2002 will be held June 21 - 23, 2002 in San Diego, CA. For more information go to http://www.pdsa.org/conference.htm.
We are pleased to announce that the United Way of the National Capital Area has approved our application. Our United Way/Combined Federal Campaign number is 9236. PDSA relies on donations to continue and expand our work. We value your contributions. Please consider designating PDSA if you donate through these organizations.
If you are not in the area serviced by the United Way of the National Capital Area you can still designate PDSA as a recipient of your funds. Just place our organization's name and address in the designated spot. The United Way will then contact us for our non-profit information. We've received United Way contributions from the United Way Capital Area (Austin, TX), the United Way Treasure Valley (Boise, ID), and the United Way California Capital Area (Sacramento, CA).
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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There's only one week left to take advantage of the $109.00 per night special room rate at our conference hotel, the San Diego Marriott Mission Valley. To book your room call the Marriott reservation lines at 800-228-9290 or 800-842-5329.
We will accept conference reservations until June 18. If you've decided to attend, please register ASAP to help us avoid a last minute administrative crunch.
For more conference information and to register go to http://www.pdsa.org/conference.htm.
Just added - the conference abstracts at http://www.pdsa.org/confabs2002.htm
Now in stock at PDSA.
The March 2002 issue of "Blood Reviews" contains 80 pages of ITP information. The sections include Pathophysiology (5 articles), Clinical management of pediatric ITP (4 articles), Clinical management of adult ITP prior to Splenectomy, (5 articles), Clinical management of adult ITP after splenectomy, (4 articles), Other immune thrombocytopenias (3 articles including "Alloimmune thrombocytopenia of the fetus and the newborn") For a complete list of the articles see: http://www.itppeople.com/blrevlist.htm
The cost is $7.00 shipping and handling to the US and Canada, $10.00 elsewhere. To order, go to http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859.
The journal copies were donated by Nabi. We appreciate Nabi's continued support in assisting our education program.
Senator Barbara Boxer (D-CA) introduced a bill to increase research on autoimmune diseases in women.
Autoimmune diseases are the fourth largest cause of disability among women in the United States. There are more than 80 illnesses classified as autoimmune diseases, including ITP.
The Women's Autoimmune Diseases Research and Prevention Act, S. 2234, would direct the Department of Health and Human Services' Office on Women's Health to support and coordinate research and develop methods to prevent these diseases in women. ITP is three times more prevalent in adult women than men.
For more information go to: http://boxer.senate.gov/newsroom/200204/20020425_health.html
Danazol may increase the risk of ovarian cancer according to a study done at the University of Pittsburgh Graduate School of Public Health and presented at the 33rd Annual Meeting of the Society of Gynecologic Oncologists. The risk increased with longer duration of Danazol use. Women who used Danazol for 4 or more months were 4 times more likely to develop ovarian cancer than those who never used Danazol.
Danazol is frequently used to treat endometriosis and occasionally used to treat ITP.
For more information see www.hemonctoday.com and http://www.itppeople.com/danazol.htm
Breath testing for H.pylori was as effective as endoscopy according to results of a trial published in the April issue of the British Medical Journal. The breath test is more comfortable and substantially less expensive than endoscopy. H.pylori is a bacteria linked to stomach ulcers and recently to thrombocytopenia.
Researchers at the December, 2001, American Society of Hematology meeting recommended that all patients with ITP be tested for H.pylori since low platelets can be associated with an H.pylori infection and treating the H.pylori has raised the platelet count in some patients.
For more information see:
If you have chronic ITP, splenectomy (surgical removal of the spleen) is not your only option. While this procedure may work well for many people initially, as many as 40% of adults do not respond to splenectomy or relapse following the procedure.1 If splenectomy fails to achieve remission, treatment options for ITP may be limited. Additionally, splenectomized people are at an increased lifelong risk of serious infection.2
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human) is a medication specifically designed to treat ITP that may help you maintain platelet levels. Therapy with WinRho SDF® is less invasive than splenectomy, and clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!3,4 The investigators concluded that continuing therapy may allow patients more time for response and may give them time to improve on their own.4
Talk with your doctor to find out about options other than splenectomy and whether WinRho SDF® is right for you.
1. Cines DB, Blanchette VS. Immune thrombocytopenic purpura. N Engl J Med. 2002;346:995-1008.
2. Waghorn DJ. Overwhelming infection in asplenic patients: current best practice preventive measures are not being followed. J Clin Pathol. 2001;54:214-218.
3. 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.
4. 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.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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This is the first ITP Conference where researchers in traditional treatments will have a chance to present and discuss their views with researchers in non-traditional treatments. We look forward to the synergy that can develop from sharing divergent opinions.
Abstracts:
Read all about it…the ITP Conference 2002 abstracts are on the web site at http://www.pdsa.org/confabs2002.htm. These are short synopsis of the talks that will be given at our conference on June 21-23 in San Diego, CA.
Room Discount Extension:
Marriott has agreed to extend the $109.00 room rate depending on room availability. Call Marriott reservations at 800-228-9290 or 800-842-5329 soon to take advantage of this discount rate. If you have problems getting the discount rate call us at 1-87-Platlet (1-877-528-3538).
Registration Deadline:
If you are planning to come to the conference, please register by June 17, 2002. We need a final count by close of business on that day.
Additional Conference Sponsor:
We welcome Genentech/IDEC as a conference sponsor. Other conference sponsors include the DAISY Foundation and Nabi. We rely on our sponsors to help make our ITP conference possible. We appreciate their support.
For more conference information and to register, go to http://www.pdsa.org/conference.htm.
The March 28, 2002 edition of the New England Journal of Medicine contains a 21 page review article on ITP by Douglas Cines, M.D. and Victor Blanchette, M.B., B.Chir. It includes sections on physiology, genetics, measuring platelet antibodies, initial and subsequent disease management, splenectomy, approaches to chronic cases, ITP and pregnancy, and other topics.
We have reprints we can send to you. They are $5.00 shipping and handing sent to US or Canada, $7.00 shipping and handling sent elsewhere. To order on-line, go to http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. You can fax your credit card order to 301-294-3125
We thank Dr. Cines and the University of Pennsylvania for helping us with this.
Did you know that 31% of our survey respondents have decided to live with their current counts? Did you know that 38% of our respondents used positive thinking in an attempt to elevate their platelets?
From August through December, 2001, we gathered 916 replies to our survey entitled "Non-Traditional Treatments of ITP". You can view these and other preliminary survey results at http://www.itppeople.com/surveyres/. We continue to analyze the large amount of data. Final results may vary.
We'll discuss these preliminary and additional results at our conference during the Sunday session.
Researchers studying autoimmune liver disease report that Vitamin D appears to be an immune system modulator. They report that administration of Vitamin D prevents disease in several autoimmune animal models and variations in the structure of the Vitamin D receptor (VDR) have been linked to autoimmune disease.
Vitamin D is known as the sunshine vitamin. Your body can produce it when sunlight interacts with a compound on your skin. It is best known for its role in controlling calcium absorption.
Unfortunately, there was no mention of ITP in the article, advice on the length of your next sun bath, or the impact of sunscreen, but this seems like it could be a promising area of research.
For more information see: http://www.medscape/com/viewarticle/433384
We are putting the finishing touches on the spring edition of "The Platelet News". This issue will have 20 pages of ITP information including "Coping with Corticosteroids" by Andrew Weil, MD, "Report from the ASH Hematology Meeting: The Form and Diagnosis of ITP", "Is ITP Treatment Different in the US and UK? Report from the ITP Association Convention," "The Child with ITP: Is Pharmacotherapy or Watchful Waiting Best?" "ITP Research News," plus our features: "In the News", "A Different View", "Abstracts of Interest" and more.
The Platelet News is a quarterly publication sent to our members. For more information and to become a member of PDSA, go to http://www.pdsa.org/joinus.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. A print copy is sent to members in the US and Canada. We send an e-mail copy to other locations.
In our April 29 issue of the platelet e-news we erroneously reported that IDEC was filing an Investigational New Drug application (IND) for Rituxan as a treatment of ITP in anticipation of conducting a phase 3 clinical trial. It is Genentech that is filing the IND and will be conducting the trial. Genentech and IDEC work very closely in developing and marketing Rituxan. See www.gene.com.
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. WinRho SDF® has not been linked with some of the troublesome side effects sometimes encountered with long-term steroid treatment. When they occur, side effects related to therapy with WinRho SDF® have generally been mild to moderate. The most common— headaches, chills, and fever—were seen in 2% or less of 848 infusions that were studied in clinical trials with WinRho SDF®.[1] Your doctor may have you take acetaminophen (eg, Tylenol®) before therapy to help you avoid these side effects.
Talk with your doctor to find out whether WinRho SDF® is right for you.
Reference:
1. WinRho SDF® Package Insert. February 2002.
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.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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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.
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.
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:
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.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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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/
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.
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.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
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)
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.
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.
For more information see http://www.iplayoutside.com/Events/2002/09/4836.html or contact Chris at Christopher.Dower@pepsi.com
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.
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.
Or…there are firms that will assess your case and help you for a fee. See: http://www.healthcareadvocates.com/ or http://www.medconsumer.com/
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.
References:
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.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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.
See: http://highwire.stanford.edu.
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.
See: http://www.alltheweb.com
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
http://thomas.loc.gov/cgi-bin/cpquery/R?cp107:FLD010:@1(sr216
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
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
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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
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
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
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
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
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
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
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.
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.”
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
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: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Platelet Disorder Support Association
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IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.