The Hemophilia Foundation of Greater Florida, a Chapter of the National Hemophilia Foundation, has been helping people with bleeding disorders since 1996. We have helped the bleeding disorders community improve their quality of life by offering programs and services to support healthier and more independent lives.
The National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) issued the following new documents, adopted by NHF’s Board of Directors in November 2012:
MASAC Document #212
MASAC Document Regarding Risks of Gene Therapy Trials for Hemophilia reiterates the importance of balancing significant innovations in gene transfer and stem cell research, while at the same time mitigating risk to patients enrolled in clinical trials.
MASAC Document #213
Recommendations for Treatment of Chronic HCV Infection in Individuals with Hemophilia and Other Bleeding Disorders addresses the proliferation of new drugs to treat hepatitis C viral (HCV) infection and considerations of possible drug interactions, safety and bleeding issues in patients with hemophilia and other bleeding disorders.
MASAC Document #214
MASAC Recommendations on the NHF Genotyping Project for Persons with Hemophilia includes a description of My Life, Our Future, Genotyping for Progress in Hemophilia, NHF’s genotyping project unveiled at its 64th Annual Meeting in Orlando, FL, last month, and MASAC’s recommendations in regard to it.
MASAC Document #215
MASAC Recommendations Concerning Products Licensed for the Treatment of Hemophilia and Other Bleeding Disorders encompasses the council’s most recent series of treatment recommendations, including information on currently available therapies.
MASAC Document #216
MASAC Statement Regarding Inhibitor Risk of Factor VII Concentrates.Inhibitor development is the single most important complication of clotting factor concentrate usage, especially for patients with severe hemophilia A. Based on the total body of current knowledge and emerging data available at this time, any Factor VIII (FVIII) preparation can be associated with alloantibody inhibitor formation, especially in previously untreated patients (PUPs) with hemophilia.
Last Updated on Monday, 03 June 2013 14:17
The marketing terms “new and improved” and “longer lasting” are not limited to the latest brand of chewing gum. They also apply to a long list of therapies now in clinical trials for people with bleeding disorders. Some people have waited years for a new recombinant product; others a lifetime for any factor product to treat their rare condition. For many, their patience is about to pay off.
There are more drugs in the pipeline now than in the past few decades. “The companies’ commitment to continue to work on behalf of patients with bleeding disorders is what’s driving it,” says Val D. Bias, CEO of the National Hemophilia Foundation (NHF). The dilemma facing many patients in the future won’t be a lack of medications, but a plethora of products that act in a variety of ways. (See table “Bleeding Disorders Drugs in Human Clinical Trials.”)
Last Updated on Tuesday, 28 February 2012 19:48
You May Be Able to Get Coverage through the Affordable Care Act
If you haven't been able to get real, affordable coverage for at least 6 months due to a pre-existing medical condition, you may now qualify for coverage through a new program called the Pre-Existing Condition Insurance Plan, or PCIP.
PCIP, often described as the “high risk pool,” is part of the new health law, the Affordable Care Act. PCIP is a temporary program that will expire when health insurance exchanges start in 2014.
PCIP applications are available now at PCIP.gov.
Last Updated on Thursday, 05 January 2012 17:45
An innovative UCF scientist has helped land two NIH grants totaling $5.5 million, the University of Central Florida announced Friday. The National Institutes of Health funding will be used to research a better treatment for hemophilia, the life-threatening blood disorder.
Last Updated on Thursday, 13 October 2011 19:44