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
Autoimmune research
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.
"…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.
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:
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.
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:
The print copy of the Summer/Fall issue of our 20 page quarterly newsletter, The Platelet News was mailed September 30. If you are a member you should be receiving your copy soon. You also have the option of receiving a .pdf version of the newsletter, avoiding the mail delays and helping to save printing costs, postage costs, and a few trees in the future. Just send an e-mail to us at pdsa@pdsa.org indicating that you want to receive the .pdf version.
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.
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.
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.
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:
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
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.)
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
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/
Senate: http://www.senate.gov/
White House Opinion Phone (202) 456-1111
White House Fax: (202) 456-2461
For information on advertising in our e-news letter contact us at 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:
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.
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
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.
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.
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
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:
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.
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.
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.
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.
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.
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:
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
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
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.
ASH Meeting
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.
On Friday morning, December 6, we will be attending the “Fourth Annual Review of Immune Thrombocytopenic Purpura”. This meeting sponsored by the Weill Medical College of Cornell University and funded by a grant from Nabi Biopharmaceuticals is not restricted to conference attendees. If you would like to attend, just contact us at pdsa@pdsa.org.
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.
Regional Meetings
We will be holding our first regional ITP meeting in Philadelphia on December 5, 2002 at 7:30 PM at the Holiday Inn Express – Mid-town. Dr. Gerald Sandler will speak on “ITP Then and Now”. This meeting is made possible by a restricted education grant from Nabi Biopharmaceuticals. See http://www.itppeople.com/calendar.htm for more information. If you would like to attend or have further questions, e-mail pdsa@pdsa.org.
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.
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.
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.
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
To unsubscribe: reply and place ‘remove’ in the subject line. To change your e-mail address, send an e-mail with your new address to news@pdsa.org
Contents:
Perchlorate, the main ingredient of solid rocket fuel was widely dumped at military bases and defense-industry sites during the Cold War. It still lingers in the water supply of 22 states including many of the USA’s fastest-growing population areas such as Nevada, Texas, and Southern California. Perchlorate is also a component of many commercial fertilizers and a by-product during the manufacturing of fireworks.
Perchlorate impedes the production of thyroid hormone. In pharmaceutical form it has been used as a treatment for an overactive thyroid. One of the side effects of treating thyroid disease with perchlorate is aplastic anemia. Aplastic anemia is characterized by bone marrow damage and pancytopenia (decrease in two of the three major cell lines in the blood – red cells, white cells, and platelets). Since, platelets are formed in the bone marrow, any substance that can damage bone marrow is of concern.
Grandipore, an Australian company, received a US Patent for its plasma separation process known as Gradiflow. Unlike other large scale purification technologies, Gradiflow can simultaneously purify proteins and remove viral and bacterial pathogens. This process is an improvement over those currently used which can leave residues of the detergent and killed viruses in the final product. The industrial potential of Gradiflow is under evaluation by leading plasma processing companies such as Cangene and Aventis.
For more information see: www.gradipore.com
Monoclonal antibodies (mab) are a relatively new class of treatment and increasingly being considered for treating ITP. Mab are often developed for treating other diseases, then tried on ITP patients. Last year PDSA added ITP clinical trials of the mab CTLA4 from Repligen (www.repligen.com) and Rituxan (www.rituxan.com) to our clinical trails list. This year we’ve added a listing for Zenapax (www.zenapax.com) also called daclizumab. This new trial is being conducted at the National Institutes of Health in Bethesda, Maryland.
See www.itppeople.com/clinical.htm for our clinical trial listings.
In a six month study, Antegren (natalizumab) a new mab from Biogen and Elan Corp. in Ireland, was reported to significantly reduce the brain lesions in people suffering from the relapsing form of multiple sclerosis. See: http://www.mult-sclerosis.org/Natalizumab.html
Humira, a mab, has been approved for the treatment of rheumatoid arthritis. The drug was developed by the Cambridge Antibody Technology Group in the UK and Abbott Laboratories in the US. See www.humira.com
The symptoms of patients with psoriasis, an autoimmune disease, improved 50% taking daily injections of the protein, interleukin-4, a Dutch-German research team reported in the January issue of Nature Medicine. It was reported that Interleukin-4 caused few side effects in the research subjects. (Science News January 4, 2003)
Korean researchers identified a compound that suppresses the immune system of animals. The research team reports that tautomycetin, isolated from a bacterial strain that grows in the soil of Cheju, an island just south of the Korean peninsula, kills human immune T cells in lab dishes. Mice treated with the compound survived an average of 160 days after a heart transplant vs. two weeks for mice treated with cyclosporin A. Note that cyclosporin A is sometimes used to treat ITP. (Science News August 31, 2002)
Post-transfusion purpura (PTP) is a complication of blood transfusions where platelet counts can plummet to below 10,000. This is a relatively rare condition, but is becoming more widely recognized reported Jan McFarland, MD of the Blood Center of Southeastern Wisconsin at the annual meeting of the American Association of Blood Banks in October, 2002. IVIg is the preferred first-line treatment for PTP. Since there is a risk of recurrence of PTP with subsequent transfusions, it is important for patients to know their diagnosis and future risk. January 2003, Hem/Onc Today (www.hemonctoday.com)
Thrombocytopenia can be induced by GPIIb/IIIa inhibitors, a new class of drugs used to prevent blood clots often following coronary angioplasty. Three GPIIb/IIIa inhibitors, abciximab, tirofiban, and eptifibatide, are approved in the US. In clinical trials 0.5 – 2 percent of patients treated with these agents experienced acute thrombocytopenia. Roxifiban, a new GPIIb/IIIa inhibitor given orally, also produced thrombocytopenia in 2% of patients in a recent clinical trial. From the January 1 issue of Blood (www.bloodjournal.org)
“Heparin induced thrombocytopenia (HIT) is one of the most common and potentially devastating of immune-mediated drug reactions” reports Dr. Barbara Alving in the January 1 issue of the journal, Blood. HIT should be suspected if the patient recently received heparin and has a marked drop in platelets. In HIT Antibodies develop against platelet factor 4 and begin a cascade of events that can end in thrombosis (blood clots). The seven page article in Blood continues with detail recommendations for laboratory testing, treatments, and patient management. (www.bloodjournal.org)
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone:1-87-Platelet or (301) 294-5967, fax: 301-294-3125, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org,
Contents:
In these volatile times, it is sometimes difficult to know the best course of action. Here’s some information that may help with any decisions you and your family face concerning smallpox vaccine.
“Patients with immune deficiency disorders and their household contacts should not be vaccinated…Any person with a condition that requires the use of prednisone or other immunosuppressive agents should not receive the smallpox vaccine at this time… If there were to be outbreaks of smallpox associated with bioterrorism, these people should check with their doctors before considering smallpox vaccination,” state Dr. Neal Halsey, Department of International Health, Johns Hopkins School of Medicine, and Dr. Noel Rose, Autoimmune Disease Research Center, Johns Hopkins University in a report written for the American Autoimmune Disease Related Association. For the full report see: http://www.itppeople.com/smallpox.htm.
You can receive more smallpox and vaccine information from the National Vaccine Information Center. See: http://www.909shot.com/Newsletters/spsmallpox.htm
The USP Drug Information Listing is a compendium recommending how therapeutics should be reimbursed for different diseases and conditions. The most recent USP Drug Information Listing (Vol. I, January 2003) has accepted Rituxan for the treatment of ITP for the first three doses. Although the FDA has not approved Rituxan for the treatment of ITP, the cost of the first three doses of Rituxan may be covered by managed care based on the USP DI's listing.
See: http://www.nlm.nih.gov/medlineplus/druginformation.html and http://www.usp.org/
Researchers have now linked the action of Sildenafil (Viagra) directly to some deaths from heart attacks. Sildenafil (Viagra) stimulates the production of an enzyme called PKG (cGMP–dependent protein kinase). Researchers have long known that PKG keeps platelets from sticking together. Now researchers at the University of Illinois College of Medicine report that PKG plays a dual role, first promoting platelet aggregation, then later, inhibiting platelet function. They found that PKG made platelets clingier only when natural blood-clotting stimulants were present. After several minutes, platelets became less sticky.
From Science News, January 18, 2003. See: http://www.sciencenews.org/20030118/fob8.asp
(Avoiding substances that inhibit platelet function is fairly obvious for someone with few platelets. However, Viagra can pose a dual problem for patients with ITP, especially those without spleens. A study published in the July 16, 1977 issue of the Lancet “Splenectomy and Subsequent Mortality in Veterans of the 1935-45 war” concluded that the splenectomized veterans they studied had increased mortality due to heart disease. During a meeting associated with the 2001 American Society of Hematology conference, Dr. Ahn from the University of Miami reported on the unusual incidence of small strokes and heart problems among his ITP patients. For more information see The Platelet News, Winter 2001, http://www.pdsa.org/newsletter.htm...ed.)
Loud noise can increase free radicals and damage DNA, according to researchers at the University of Pisa in Italy. They blasted 10 male lab rats with 100 decibel noise, the volume heard in some dance clubs, then analyzed their cells. They found the rats subjected to the loud noise had more broken cell membranes than those held in a quieter environment. “Loud sound sensed by the auditory system can trigger a surge in blood concentrations of the hormone norephephrine, which stimulates heart cells to absorb too much calcium. That can weaken the membranes of the mitochondria and cause them to release free radicals,” notes Pisa geneticist Giada Frenzilli. In the past, loud noise has also been linked to high blood pressure and heart disease. Other researchers suggest that the loud noise causes stress and it is the stress that is responsible for the damage. See: http://www.sciencenews.org/20030201/fob4ref.asp
(At the 2002 American Society of Hematology Meeting, some researchers reported on the link between free radicals and ITP. We will have more information on the ASH conference in our next issue of The Platelet News…ed.)
The World Health Report 2002 – Reducing Risks, Promoting Healthy Life concluded that life expectancy could be increased by five to ten years if government and individuals address the major health risks. The top ten global risks are childhood and maternal underweight; unsafe sex; high blood pressure; tobacco and alcohol use; unsafe water, sanitation, and hygiene; high cholesterol; indoor smoke from solid fuels; iron deficiency, and overweight and obesity. The health risks differ markedly between richer and poorer nations. According to Christopher Murray, MD, PhD, director of WHO’s World Health Report 2002, “Globally, we need to achieve a much better balance between preventing disease and merely treating its consequences.”
From Hem/Onc Today, January 2003, pp. 15-17
The full report is available in all six WHO official languages - English, French Spanish, Arabic, Chinese and Russian –See: http://www.who.int/whr/en/
Contents:
Several new research programs sponsored by the National Center for Complementary and Alternative Medicine will explore the mind-body connection in healing. A pilot study at the California Pacific Medical Center suggested that it is possible to measure biological properties of cultured human cells in response to healing intentionality. Also, the University of Arizona’s new Center for Frontier Medicine in Biofield Science will offer doctor training and research opportunities to understand the connection between biofield therapies like qi gong on cellular function.
Ions Noetic Science Review Dec.2002-Feb.-2003 pp. 36 – 38
Patients involved in fibromyalgia research at the University of Louisville and psoriasis research at the University of Massachusetts Medical School Stress Reduction Clinic responded to treatment faster when they learned relaxation techniques such as meditation. (Note: fibromyalgia and psoriasis are autoimmune diseases)
Shape.com March 2003. pp. 103
Rheumatoid arthritis patients reduced their pain and inflammation in 12 weeks after switching from a western diet to a traditional Mediterranean diet, according to Ume University’s Dr. L. Hagfors and his associates. The diet called for a high consumption of fruit, vegetables, cereals, legumes, olive or canola oil, and green or black tea instead of wine. C reactive protein levels and thrombocyte counts were also decreased by this diet. (Note: Rheumatoid arthritis is an autoimmune disease)
“Mediterranean Diet Suppresses Disease Activity in Rheumatoid Arthritis” Reuters Health Information. Feb 19, 2003.
Thrombocytopenia in systemic lupus erythematosus (SLE) patients may indicate a severe familial form of the disease, report researchers at the University of Oklahoma. The associated genetic risk factors therefore need to be identified. Thrombocytopenia was associated with nephritis, serositis, neuropsychiatric involvement, autoimmune hemolytic anemia, anti-double-stranded DNA, and anti-phospholipid antibody.
“Thrombocytopenia identifies a severe familial phenotype of systemic lupus erythematosus and reveals genetic linkages at 1q22 and 11p13” Acofield, Bruner, Kelly, Kilpatrick, Bacino, Nath and Harley, Blood 1 February 2003 Vol. 101, No. 3 pg. 992
See: http://www.bloodjournal.org
Drinking a beer a day alters the structure of fibrinogen, a blood protein involved in blood clotting, report researchers at Hebrew University-Hadassah Medical School in Jerusalem. When the subject’s blood was analyzed ten percent of their fibrinogen disappeared and much of the remaining fibrinogen underwent changes that compromise the blood clotting process. The group suggests that some of the fibrinogen effect may be traced to polyphenols, pigmented antioxidant compounds in beer, green and black tea, red wine, and grape juice .
“Why beer may deter blood clots”, Science News, March 8, 2003, Vol 163, P. 157.
See: http://www.sciencenews.org
Nobel Laureate James Watson, National Human Genome Research Institute Director Francis Collis and others will share their insights in a free program at the National Museum of Natural History in Washington, DC on April 15, 2003 from 9AM to 1PM. A limited number of scholarships are available to defray travel and/or lodging costs for members of the public who otherwise could not attend.
See www.genome.gov/About/April2003. For a scholarship application call 301-402-0955.
Contents:
Thrombopoietin treatment may hold promise in raising platelet counts for various types of thrombocytopenia Dr. David Kuter reported at the American Society of Hematology meeting held Dec. 6, 2002. In a limited research study reported in the journal Blood, several patients with ITP had a rise in platelet count after receiving the PEG-rHuMGDF form of thrombopoietin (platelet growth factor). In other studies thrombopoietin raised platelet counts in some patients with thrombocytopenia due to cancer treatments and HIV. The PEG-rHuMGDF form of thrombopoietin is no longer being developed in North America due to anti-body formation. Research here has shifted to rHuTPO, more nearly like native thrombopoietin.
Hem/Onc Today ASH Symposia Highlights April 2003
Blood. 2002; 100(2): 728-730
www.bloodjournal.com
Female rheumatoid arthritis patients might consider consulting a doctor about aggressive monitoring and treatment of heart disease risk factors, according to a study reported in online versions of the February issue of Circulation. Circulation reports women with rheumatoid arthritis, an autoimmune disease, had twice the risk of heart attack compared to those who did not have the disease. The Merck-supported study looked at heart attacks in 114,342 women, 527 of which developed rheumatoid arthritis in 20-year follow-up. Past studies have found that inflammation of the joints can lead to fatty buildup in blood vessels.
Washington Post
(Note: ITP is also an autoimmune disease. Although platelets are low, patients with ITP can still have heart disease)
“Idiopathic Thrombocytopenic Purpura: Pathophysiology and Management” by Yeon S. Ahn and Lawrence L. Horstman published in the International Journal of Hematology is available on the web. See: http://haem.nus.edu.sg/ishapd/2002/827.pdf
Our thanks to one of our discussion group members for finding and posting this link. See http://discuss.pdsa.org
Stress and the “nerve gas pill” (pyridostigmine bromide, PB, NAPS) are two main potentially explanatory factors in the Gulf War cluster of illnesses. The diseases are mostly common ailments occurring at a high level of incidence and possibly the result of the mixture of acute chemical and physiological stressors that could begin an automimmue response in some organs, tissues, or cells. Veterans of the Gulf War were exposed to these elements in a shorter time, in greater intensity, and at a higher percent of exposure than the general population. Studying these experiences may serve to help prevent or possibly treat diseases linked to these risk factors.
Med Hypotheses 2001 Feb;56(2):15
Most Americans carry a whole new set of toxins in their blood compared to 40 or 50 years ago, says Mount Sinai School of Medicine pediatrician Philip Landrigan, commenting on two new studies of the prevalence in the human body of more than 100 chemicals, including phthalates, DDT, lead and other metals. The CDC and the Washington, DC-based Environmental Group performed the studies separately. “As a society, we are still treating chemicals as if they are innocent [safe] until proven guilty [unsafe],” says Tufts University endocrinologist Ana Soto. Children who eat organically grown fruits and vegetables have only one-sixth the concentrations of organophosphate pesticide byproducts in their urine as children who eat conventionally grown produce reports Cynthia Curl of the University of Washington.
Science News February 22, 2003 Vol 163 pg. 120
New technology expert David Bates of the Brigham and Womens’ Hospital in Boston is studying “smart pumps,” or improved IV technology in the hospital’s cardiac units. The devices, intended to reduce medical errors and drug overdoses, can be programmed with hospital guidelines and warn caregivers who violate the guidelines or stop delivering treatments completely. Smart-pump designer Alaris Medical Inc. is offering the market an option for addressing what they count as about one life-threatening IV mistake every two and one half days. The pumps cost $1.2 million for the average hospital, making the technology not yet widely available.
Wall Street Journal 3/26/03 Laura Landro
Almost 100 U.S. hospitals offer alternative or complementary treatments, and that is a number that was fewer than a dozen three years ago. The institutions say they are just responding to patient demand, according to experts, despite some concern that these treatments might only offer false hope. People in the U.S. make about 600 million visits a year to unconventional caregivers, while hospital facilities report a doubling or tripling of patients who seek care for automimmune and other diseases. Treatments include acupuncture, Reiki, aromatherapy, and different forms of meditation.
The Holistic Hospital 3/28/03 pg. W1
On April 3, 2003, the Supreme Court ruled that sates can require managed care health plans to accept any qualified doctor who wants to participate in their health plan, upholding a Kentucky law. While about half the states have “any willing provider” laws most apply only to pharmacies rather than the full range of medical care. States have become more active in passing health care legislation because of the stalemate at the federal level.
New York Times, April 3, 2003
Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003 | pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.
© Copyright 1997 - 2026, Platelet Disorder Support Association. All rights reserved.
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.