back to News
Archived News and Events
Update on West Nile Virus and Blood and Organ Donations
Will there be a new approach to hemophilia treatment?
Return to Pre-Shortage Usage of Factor VIII
National Hemophilia Foundation's 54th Annual Convention to be held in Lake Buena Vista, FL
COX-2 Inhibitors - Safe?
New York Times: Approval of Advanced Blood Screen Will Lift Cost
NHF Advisory
VHTC to Begin Dental Program
Aventis Announces Voluntary Recall of Recombinant Factor VIII
Kudos to Mavis
TN Hemophilia and Bleeding Disorders Foundation Holds Successful Fundraiser
Will there be a new approach to hemophilia treatment?
Return to Pre-Shortage Usage of Factor VIII
National Hemophilia Foundation's 54th Annual Convention to be held in Lake Buena Vista, FL
The NHF's Annual Convention is going to be held at Disney's Coronado Springs Resort from October 30- November 2, 2002. This year, consumers and families will have the chance to share their experiences with other consumers and discover new products from industry representatives. Kids ages 4 to 18 can participate in the Youth & Adolescent Program, which offers arts and crafts, a scavenger hunt, outdoor activities and a trip Walt Disney World Theme Park. The final night event will be a special presentation created at the resort. From 7:00 till 11:00 there will be a fantasy filled extravaganza as a closing celebration. For providers, there will be several new events. There will be a one and a half day symposium that will focus on gene therapy. It will review various approaches to gene transfer, safety issues, results of clinic trials to date, and many other issues. Providers will also be able to learn about medical advances, the latest treatments, meet with the leading experts and network with other clinicians and researchers.If you would like to attend, contact your local HTC or the NHF at meetings@hemophilia.org
Return to Pre-Shortage Usage of Factor VIII
The shortage of Factor VIII has been declared at an end. On September 12, the Board of Directors of the National Hemophilia Foundation approved a recommendation made by the Medical and Scientific Advisory Council (MASAC). The recommendation states that the shortage is at an end and informs hemophilia treatment teams that they are able to resume their regular treatment protocols.The shortage began in April of 2001, which resulted in a recommendation that there be a 20-30% reduction in recombinant Factor VIII usage. Hemophilia treatment teams adhered strongly to the recommendation and an even greater shortage was avoided. Even though many hemophilia centers are no longer having difficulty obtaining recombinant Factor VIII products, MASAC has advised that there not be an abrupt return to previous usages. This is intended to prevent a new short-term shortage. Also, centers have been told to refrain from hoarding rFVII products, which could also result in shortages.
Will there be a new approach to hemophilia treatment?
There may be hope that a commonly used antibiotic may provide a new way to battle genetic disease. This would impact researchers dealing with diseases such as cystic fibrosis, muscular dystrophy and hemophilia. These researchers are hoping that the antibiotic gentamicin will counteract the genetic defects that made these patients sick. Gentamicin has been used in the United States for over thirty years to treat urinary tract infections and blood infections in newborns.There are only a fraction of patients who have the kind of defect that gentamicin targets, so it's really too soon to know if this approach will benefit many patients. Moreover, Gentamicin use runs the risk of serious side effects that include hearing loss and kidney damage. However, there are 30 hemophilia patients in Dr. Steve Sommer's study, and they will be given injections of gentamicin over three days to see if it will affect their livers' ability to make fully functional clotting factor. Even though patients can lead relatively normal lives with genetically engineered clotting factor, Sommer hopes his research could lead to a pill instead of frequent injections. This would also impact children in lesser-developed countries who die because the cost of injected clotting factor is extremely expensive. Even injected gentamicin offers the hope of an affordable drug. About 10% of patients with Factor VIII deficiency and about 30% of patients with Factor IX deficiency show the mutation that gentamicin specifically targets. The NHF and the federal government are both funding Sommer's work.
Sommer stated that he gets emails regularly from around the world asking how the research is progressing and that those emails are what keep him motivated.Taken from an article written by MALCOLM RITTER, AP Science Writer
COX-2 Inhibitors - Safe?
Wondering if the newer class of NSAIDs (non-steroidal anti-inflammatory drugs) called COX-2 inhibitors may be safe to take by those with a bleeding disorder, MASAC, the medical advisory board of the National Hemophilia Foundation, issued an advisory concerning these drugs. These painkillers have less gastrointestinal tract toxicity than traditional NSAIDs, and are approved for use in arthritis and menorrhagia. The COX-2 inhibitors (short for cyclooxygenase-2) are not associated with platelet dysfunction in vitro, but MASAC notes that there have been anecdotal reports that use of the drugs has caused clinically significant bleeding in some people with bleeding disorders.MASAC advises caution with the use of these drugs for anyone with a bleeding disorder. The board further advises providers to maintain close vigilance for symptoms and signs of gastrointestinal bleeding in a patient using them, and to consider monitoring hemoglobin and hematocrit, and performing hemoccult testing.
Specifically, MASAC recommends the following:
- COX-2 inhibitors may be preferable to standard NSAIDs and other analgesics in individuals with bleeding disorders.
- Individuals who are sensitive to sulfa should be aware that Vioxx® may be preferable to sulfa-containing COX-2 inhibitors, such as Celebrex®.
- Clinical surveillance and research on bleeding complications of COX-2 inhibitors are needed.
Taken from Hemalog, Volume 13, Number 2, April 2002
New York Times: Approval of Advanced Blood Screen Will Lift Cost
March 1, 2002
By Andrew PollackThe FDA approved a blood screening test yesterday that is highly sensitive and will screen blood donations for viruses responsible for AIDS and Hepatitis C. This new test is is one of many new techniques that are being introduced in an effort to clean up the donation blood supply, but some are questioning the cost of these new methods.
The FDA's approval will eventually lead to this test becoming mandatory. But even as experts applaud the health benfits, some say that the blood supply is already safe enough that the U.S. will spend hundreds of millions of dollars on techniques that do not save a substantial number of lives. These people say that the money would be put to better use in preventing transfusions of the wrong blood type things of that nature.
Dr. Michael P. Busch says he's ambivalent: "On the one hand, we're stopping infections and it's good. On the other hand, we're spending enormous resources to stop rare residual infections."
The new test developed by Chiron and Gen-Probe is known as nucleic acid testing, and it directly measures the viruses RNA. Tests of this kind have been used experimentally for almost three years on nearly all the nation's blood. 26 million blood donations were tested and these tests have detected 8 cases of HIV and 113 cases of Hepatitis C that were not caught by the existing screening tests.
There's more! To read the full article, click here: http://www.nytimes.com/2002/03/01/business/01BLOO.html
NHF Advisory
Many of our patients are concerned about a recent report from the National Hemophilia Foundation (Medical Advisory #390), in which it was stated that a patient with hemophilia in Western Canada had tested positive for HIV. In short, he has been using Baxter's recombinant product RecombinateR since his last HIV test in 1999, but this individual had other risk factors. The factor product was NOT the source of the HIV infection.
Baxter Bioscience has identified the 5 lot numbers of product that this individual has used, and 3 of the 5 were distributed in the United States. The 5 lot numbers are:
- 2938V547AA
- 2938V554AA
- 2938V866AA
- 2938X828AA
- 2938T520AA
Please note that other patients who have received factor from these same lots have tested negative for HIV.
The Vanderbilt Outpatient Pharmacy has notified the VHTC that none of the 5 lot numbers were stored or distributed to any patient who used the Vanderbilt PHS program from 1999 to present. Furthermore, no patient of the VHTC has received product from these lot numbers.
If you are a member of the National Hemophilia Foundation or a local chapter member, you may have already received or will soon receive the detailed medical advisory #390. You may also read about the advisory online at www.hemophilia.org. Please feel free to e-mail us with any questions.
VHTC to Begin Dental Program
The VHTC wants to educate and promote good dental hygiene. This is an area that the National Hemophilia Foundation has stressed and has included in their standards of care. It is important that our patients have a yearly dental check-up and that they brush and floss at least once a day. Preventive care is the key.
The VHTC is gathering data and establishing a program to assist in providing an annual dental check-up for patients who do not already have access to a dentist, do not have dental insurance, or are not on the State Hemophilia Program. We have information on basic dental care that we will be giving out to patients when they come to Comprehensive Clinic. We will also have a list of dentists available, both pediatric and adult, who are willing to see patients with bleeding disorders. We hope to arrange times for patients to see the dentist on the same day they come to their Comprehensive Clinic appointment.
We will provide more information as this program develops.
Aventis Announces Voluntary Recall of Recombinant Factor VIII
Aventis Behring, LLC is voluntarily recalling one lot of Helixate FS Antihemophilic Factor (recombinant) because the lot failed to meet potency requirements when stored at room temperature. This recall is based on the results of potency testing following 9 weeks of storage at room temperature. Vials kept under continuous refrigeration are NOT affected by this recall.
LOT NUMBER EXPIRATION DATE LABELED POTENCY 372J033C 04 September 2002 500 IU / vial Customers who purchased this product directly from Aventis Behring will be credited for every returned vial of Helixate FS from Lot No. 372J033C only, and through a distributor will be credited through their distributor.
If you have any questions, please contact Customer Support at Aventis Behring at 1-800-504-5434.
Kudos to Mavis
Mavis Harrop, our VHTC Social Worker, serves on the Editorial Board of Hemaware, the official publication of the NHF.
TN Hemophilia and Bleeding Disorders Foundation holds successful fundraiser
Under the CoChair leadership of Catherine vanEys and Pamela Janco, the Foundations second annual Gala generated $36,000 revenue for the Foundation's programs and services.The Vanderbilt Hemostasis-Thrombosis Clinic
397 Preston Research Building
Nashville, TN 37232-6310
(615) 936-1765
For more information about bleeding and clotting disorders, call toll-free 1-866-DR BLOOD
VHTC Homepage | About VHTC | For Patients and Families | For Referring Providers | Information About Hemophilia and Clotting Disorders | News and Events | Pharmacy Services
Vanderbilt Medical Center | Vanderbilt University | Help | Search
Copyright © 2002 by Vanderbilt Medical Center. Vanderbilt University is committed to principles of equal opportunity and affirmative action. For more information about this site, please contact the VHTC webmaster. For information about the Vanderbilt Medical Center web site, please contact the VUMC webmaster.