SAVE THE DATE
Adirondack Spin-Tacular
Saturday, September 10, 2005
10:00 am Rain or Shine
For Hemophilia and Organ Donor Awareness
To Benefit The Lawrence Madeiros
Scholarship Fund
For more information:
Call Lisa or Carol (518) 863-2668
Website: http://www.AdirondackSpintacular.com
Recovery & Product Issues
 There has been some discussion lately about the differences in recovery between BeneFIX and other Factor IX products. Some manufactures have claimed that their products give recoveries up to twice that of BeneFIX.
One important point to keep in mind is that every patient reacts differently to every different factor product and, in fact, to every different medicine, in general. If you test a large group of patients, you will find a wide range of recoveries. However the only way to really show the actual difference in recovery between two products is with a randomized cross-over study with a reasonably-sized group of patients. “Cross-over†means that all patients get both products and “randomized†means that the order in which they get the products is randomly chosen.
Because BeneFIX is known to have a lower recovery, FDA required the manufacturer to do a randomized cross-over study and to include the results in their Prescribing Information. The results of the study showed that BeneFIX has a 28% lower recovery compared to a highly purified plasma-derived product. The inverse of this is that the other product had a recovery of 1.4 times that of BeneFIX.
The study also showed that the half-life of both products were the same. The half-life is a measure of how long the product remains in the bloodstream. Thus the only claim currently accepted by the FDA is that the recovery of BeneFIX is about 28% lower. Remember, however, that this is just an average result. Any individual patient could show a much greater or lower difference than the average.
Living with Hepatitis C
Part II – Treatment and Cure
Wayne Cook
Please email Wayne if you have any questions he is happy to help. wcook22@hotmail.com
In Spring 2004, I was back in the hospital for an infection in my right leg (due to my low white blood count). I had to have an I.V. of antibiotics, which were not working. The doctors decided to operate on the leg to get rid of the infection.
After spending two and a half weeks in the hospital and three more months out of work, I began to feel better physically. The doctors were still concerned with my immune system and said I really needed to watch out for any type of infection.
All through the treatment phase I was seeing doctors on a continuous basis between New York and Florida. By Summer 2004, once again I was admitted to the hospital with another infection in the left leg. After treating the infection my wife and I went to see the doctor in Florida for a regular checkup.
FACTOR NINE FORUM
San Diego Marriott Hotel & Marina
(at the NHF Meeting)
Friday, October 28, 2005
5:00 pm – 6:30 pm
San Diego, CA
We would be pleased if you would join us early Friday evening for an informal social gathering for people with hemophilia B and their families to share concerns, gain support and knowledge in a safe forum.
Our meetings have been quite successful in bringing together people with hemophilia B from all walks of life. New families can learn a lot from the families who have already been through the ropes.
Tea, Coffee, Soft Drinks & Snacks will be served.
We look forward to seeing you!
CAREMARK IN TROUBLE
We though you might be interested in an article written by Colleen Mensching, Staff Writer at RedlandsDailyFacts.
Whistleblowers have targeted Caremark, RX, Inc. a national pharmaceutical services company with a facility in Redlands, alleging the company’s practices at the Redlands location and facilities elsewhere in the nation compromised the safety of specialty drugs and the health of patients who rely on them.
In addition to mishandling drugs for conditions such as hemophilia, hepatitis, etc. the suit alleges that Caremark’s mail-ordered products generally required special handling, including refrigeration. Medications were regularly returned to the company’s facilities all over the country, re-stocked and used to fill other prescriptions, the suit said.
The four whistleblowers are all former Caremark employees. Two live in Florida and two live in Texas. They reported that the backlog of returned drugs often contributed to further delay and mishandling of products. “Returned drugs at the Florida facility sometimes sat for days, weeks or even months prior to being eyeballed for processing, or restocking and resale, to other unsuspecting Caremark customers. In some facilities employees “generally used a blow dryer to remove the patients labels from those returned prescription drugs.
The suit accuses Caremark employees of creating fake documents that said the returned drugs had been destroyed when they had actually been restocked or resold.
Caremark has issued a statement denying the wrongdoing. If you would like a copy of the write-up, please us at hemob@ix.netcom.com.
New Insurance Gap Program Launched
Wyeth Pharmaceuticals
 The new Wyeth Factor Resource Program consists of three individual programs:
- Insurance-Coverage Program
- Patient Assistance Program
- Reimbursment Information Line
The Insurance-Coverage Program provides up to 1 year or 200,000 IU maximum of free hemophilia product to eligible participants experiencing a lapse in insurance coverage. For more information call (888) 999-2349 or visit http://www.hemophiliaviallage.com
Winners of National Competition: Camp Superfly
Baxter announced the winning teams of CAMP SUPERFLY, a nationwide competition to support summer camp programs for children affected by bleeding disorders. The winning teams: the Lone Star Bumblebees from the Lone Star Chapter of NHF, the Texas Central Yellowjackets from Texas Central Hemophilia Association and the Iowa Water Bugs from Hemophilia of Iowa, Inc. The grant dollars can be used to improve a chapter’s existing summer camp, start a new camp or send more children to camp. For many of the younger members of the bleeding and clotting disorders community, summer camp is often an important experience as they learn how to take care of themselves, manage their condition, safely participate in team sports and talk with others their age who share this condition. Ultimatley, camp instills a sense of price, togetherness and builds self confidence.
See http://www.hemophiliagalaxy.com for more information. |
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