PSI's
Items Program Transitioned Over to the Hemophilia Federation of
America!
According to an April 3rd press release, PSI is no
longer be in the business of providing items such as Cryo Cuffs,
imobilizers, helmets, and so on. The long running "Patient
Assistance Items Program" has been permanently moved to a new
home as a program of the HFA.
Future requests for items should be directed to the
Hemophilia Federation of America at 1-800-230-9797. For more information
or to read the press release for yourself, simply follow this link
to the ground breaking news. |
HFA Symposium 2012
March 30th & 31st were the dates
for the Hemophilia Federation of America's 2012 Annual Symposium.
The session topics ranged from nutrition to orthopedic surgery in
individuals with bleeding disorders and even the Centers for Disease
Control's new look for the Universal Data Collection Project.
The Symposium was enlightening to say the least as
different "tracks" were offered for different individuals
and interests. Some of the key topics that seemed to be at the forefront
of many conversations was the battle with Hepatitis C that many
of the older community members are in and ensuring choice and options
always remain (in product, service and even way of life). If you
would like more information on the HFA Symposium, please check out
their site by clicking here. |
New
Factor VII Product on the Horizon?
On March 30th, 2012 CSL Behring announced
a phase I study of their new Factor VII molecule. The molecule is
bound to albumin in an attempt to extend the Factor VII half life.
The study will be looking at the possibility of making an effective
treatment for individuals with inhibiters to either Factor VIII
or Factor IX.
This same product was previously given orphan drug
status by both the FDA and the European Commission. This may lead
to a large advancement in treatment for inhibiter patients that
do not succeed with immune tolerance therapy. For more information
on this story, you can check out the story in its entirety here. |
What does NASA
have to do with Hemophilia?
As published by Gizmodo on February 8, 2012,
NASA has something in the works that may benefit the bleeding disorders
community. NASA has been looking into ways of providing healthcare
to their astronauts while they are in space and away from the doctors
and medicines the rest of us use. According to Gizmodo, Dr. David
Loftus has invented a biocapsule that may be the solution to NASA's
needs and a large step forward for people with hemophilia and many
other chronic conditions.
The biocapsules are packed with cells that can release
needed medications or proteins. Once specific events trigger the
cells to begin production, the medication or protein would then
cross through the porous biocapsule through diffusion where it can
be absorbed by the body.
While it is probably not the most efficient method
for factor replacement, it may be a new prospect for use with gene
therapy. To read the full Gizmodo article, click
here. |
It's
Hemophilia Awareness Month!
Starting March 1st, as part of Hemophilia
Awareness Month, several things are supposed to be taking place.
The month of March should act as a type of motivation to help educate
those who know very little about hemophilia, correct misinformation
wherever it is found, find ways of encouraging research and advancement
in therapies, and above all else try to gain more knowledge on the
subject ourselves. There is always more to learn.
If there is information that we may have that you
want, or if you can think of an educational opportunity you have
and may want our help with, just email
us here. |
New Human Study
With
Fc Fusion & Factor VIII!
A study published on January 5th, 2012
in The Journal of the American Society of Hematology reports that
16 Individuals with hemophilia participated is a study using the
new Fc Fusion Technology.
The 16 people received varying doses of the recombinant
clotting factor Advate and monitored in order to determine the rate
at which the factor was depleted. Once the Advate was out of their
systems, the same 16 individuals were then given the same doses
of the rFVIIIFc (the recombinant Fc Fusion protein) as they had
received of Advate.
While the peak factor levels reached for the rFVIIIFc
were similar to those reached by the equivalent dose of Advate,
the rFVIIIFc lasted significantly longer in the person's system
than Advate. For the specifics on this study check it out here. |
Study
Shows Both Pros and Cons
to Fc Fusion and Factor IX!
January 19, 2012 - the Journal of
the American Society of Hematology prints a study regarding a phase
I trial of the Factor IX protein incorporating Fc Fusion technology.
The study shows that the time that the Fc Fusion factor molecule
lasts in a patient's body is extended by an incredible 3-4X that
of the existing monoclonal factor molecules.
This paper also discusses the after effects that were
noted with the new Fc Fusion product. While the study is only based
on 14 individuals and it cannot be certain which after effects were
directly related to the product, they will definitely be something
to watch as more research is done.
To read the report yourself, the pros and the cons,
follow
this link and see what you think. Would possible headaches and
other side effects be worth the dramatically extended half lives? |
Follow
Up!!! Hemophilia B, Treated With a Virus?
On December 11, 2011 The New York
Times published a fantastic article with more updated information
on the very story we broke over two months prior. To read this article
in its entirety please click here.
While their article is great the New England Journal of Medicine
did publish an article about the study as well one day earlier.
To read the New England Journal of Medicine's article, click here. |
The
FDA Gives Green Light
To Gene Therapy!
A new year brings a new realm of possibilities. On
January 4, 2012 the company "Amsterdam Molecular
Therapeutics" announced that they had been given approval by
the FDA to conduct clinical trials on Hemophilia B patients in the
United States. St. Jude's Children's Research Hospital in Memphis
will be the Center point for the studies in the US.
These studies will be building on the earlier successes
you've already read about right here on 'The Latest" page.
More information on this announcement can be found here. |
New Study on Immune
Tolerance Therapy
November 13, 2011: According to a
study published in the Journal of the American Society of Hematology
high dose therapy for immune tolerance is shown to not only be more
effective than low dose therapy, but it succeeds in much less time
and without any noticeable increased chance of infection or other
concerns. To view the article on the Journal's website, click here. |
New
Factor Xa Research May Help Hemophilia A and B Patients with Inhibitors!
On October 23, 2011 Nature Biotechnology
published a study completed by researchers at the Children's Hospital
of Philedalphia on an engineered Factor Xa. The study will be appearing
in the November 2011 issue. The genetically engineered Factor Xa
should work as a bypassing agent and allow clotting even more efficiently
than Factor VII does.
This could really enhance an inhibitors patient's
treatment and prevent many of the prolonged bleeding episodes when
the research comes to fruition. This may also lend itself to act
as a treatment for people having rapid blood loss in other situations
as well.
To read more on this subject you can check out; News-Medical
or for the more scientifically minded, Nature
Biotechnology. To access more than the summary on the Nature
Biotechnology site, you will have to purchase the article if you
do not have a subscription. |
Tylenol® Dosing
Information Changed
November 15, 2011: McNeil Consumer
Healthcare (the makers of Tylenol®) releases new dosing instructions
for Extra Strength Tylenol. Due to concerns of overdosing causing
Liver damage the recommended dosing has been changed to limit the
chances of liver damage. Since acetaminophen (the generic name for
Tylenol) is used in many products it is easy to overdose without
realizing it. To see the new recommended dosing, click here. |
Non-sterile
Alcohol Wipes
October 26, 2011: If you are a U&I
customer, don't worry. we have never dispensed any PDI alcohol wipes.
A recall was placed on alcohol wipes made by Pacific Disposables
International (PDI) due to infections caused by non-sterile alcohol
preparation pads. If you received alcohol wipes from other sources,
please check to make sure Pacific Disposables International did
not manufacture them. Look at the fine print as they are sold under
various brand names.
To see the MASAC Advisory, click here. |
Hemophilia
B, Treated With a Virus?
In a recent meeting (October 7, 2011)
at the National Institutes of Heallth hemophilia was a
central part of the discussion about gene therapy. Six severe hemophiliacs
with Hemophilia B were given a virus engineered to carry the genes
for Factor IX production.
All six saw increases in Factor IX production ranging
from 1% to 8% in increased levels. This provides new hope that some
time in the future gene therapy may become reality for bleeding
disorders.
We'll be trying to follow up on this story in the
near future. More information is also available at the Science American
Association for the Advancement of Science magazine's website. |
Factor
IX Variants Can Bypass
Factor VIII & Treat Hemophilia A.
October 14, 2011: In an article released
in the Journal of the American Society of Hematology, FIX variants
can be used to bypass the lack of FVIII found in Hemophilia A mice.
The variants were expressed using a non-viral gene transfer and
resulted in normal clotting. This new avenue might open doors for
people with inhibitors to factor VIII or even all Hemophilia A patients
at some in the near future.
Read this article in the Journal
of the American Society of Hematology. |
New
Hope in Treating Hep C!!!
Two protease inhibitors, Boceprevir
(aka Victrelis by Merck) and Telaprevir
(aka Incivek and VX-950 by Vertex), were approved for use earlier
this year. While these new medications must still be used along
side Interferon and Ribaviren they have shown to be effective in
treating most Type I HCV patients by helping them to respond quickly
and effectively to the treatment. Use of the protease inhibitor
has shown to lessen the time a person needs to be on treatment in
most cases and dramatically increase the success rate.
These new medicines are only for people who have the Type I genotype
of the Hepatitis C Virus. This is a huge breakthrough since Type
I has been considered the most difficult to clear. |
Have a suggestion for an update or news flash?
All suggestions welcome, please feel free to email
them to us here. |
Straight from the
FDA!!!
On September 29, 2011, the Food and Drug Administration
approved a135 mcg/0.5ml and 180 mcg/0.5 ml disposable autoinjector
(DAI) to administer Pegasys (peginterferon alfa-2a), an antiviral
indicated for treatment of Chronic Hepatitis C (CHC) by subcutaneous
injection.
Pegasys continues to be available in a vial or prefilled syringe,
and now also in a 135 mcg/0.5ml and 180 mcg/0.5 ml PEGASYS disposable
autoinjector.
The updated label and Medication Guide can be found on the FDA
web site by clicking here. |
