CSL Behring's Grassroots Advocacy Grants Promote Early Diagnosis And Access To Care For Patients With Rare Diseases

CSL Behring's Grassroots Advocacy Grants Promote Early Diagnosis And Access To
                     Care For Patients With Rare Diseases

CSL Behring has awarded 45 LEAD grants totaling more than $600,000 to patient
advocacy organizations since the program was established in 2008.

PR Newswire

KING OF PRUSSIA, Pa., Jan. 30, 2013

KING OF PRUSSIA, Pa., Jan.30, 2013 /PRNewswire/ --CSL Behring announced
today that it has awarded $78,750 in Local Empowerment for Advocacy
Development (LEAD) grants to patient advocacy organizations in New York and
Ohio, and to the American Plasma Users Coalition (APLUS). LEAD grants are
intended to help local patient organizations achieve their advocacy objectives
by further developing an existing initiative or creating a new one.

(Logo: http://photos.prnewswire.com/prnh/20100914/PH63692LOGO )

American Plasma Users Coalition
American Plasma Users Coalition (APLUS) is an umbrella group of patient
advocacy organizations representing individuals reliant on plasma therapies.
The coalition includes the National HemophiliaFoundation (New York, NY),
Alpha 1 Association (Miami, FL), Alpha 1 Foundation (Miami, FL),
Guillain‐Barre Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy
Foundation International (Narberth, PA), Committee of Ten Thousand
(Washington, DC), Hemophilia Federation of America (Washington, DC), Jeffrey
Modell Foundation (New York, NY), Platelet Disorder Support Association
(Rockville, MD) and Patient Services Incorporated (Midlothian, VA).

The LEAD grant will provide second-year funding for the APLUS state insurance
exchange project. The project is designed to educate state advocates for all
APLUS members on the development of state insurance exchanges and related
insurance reforms stemming from the Affordable Care Act. The project will
assist and educate state advocates about engaging in the process and rollout
of a state health insurance exchange, as well as impacting the design of
essential health benefits for those state exchanges.

Larry LaMotte, Vice President of Public Policy at the Immune Deficiency
Foundation, had this to say about the LEAD grant to APLUS. "We are so pleased
that CSL Behring is continuing to enable the members of the coalition to
educate our patients about how to navigate issues surrounding the health care
reforms of the Affordable Care Act. This will allow our patients to be better
consumers and our member organizations to be better advocates for patients
with rare and chronic diseases who use plasma protein products."

Hemophilia Association of New York
The Hemophilia Association of New York (HANY) will use its LEAD grant to
support the ongoing effort to pass legislation extending the State's Child
Health Plus Insurance (CHiP) coverage for blood clotting factor to the
outpatient setting.Currently, the CHiP program in New York only covers
clotting factor administered in an inpatient setting, which can be a barrier
to patient access. Last year the State Assembly passed legislation allowing
for coverage in the outpatient setting, but the bill did not make it through
the Senate before the end of the legislative session.

HANY Executive Director Linda Mugford said the Association, which is a member
of the New York State Bleeding Disorders Coalition, is very pleased that CSL
Behring awarded this LEAD grant to aid the organization in its statewide
advocacy efforts. "Our focus this year will be on the current CHiP
legislation introduced in the Senate during the last legislative session. The
CHiP program currently does not cover out-patient factor for enrollees. This
has caused many families who are eligible for the program to not utilize it,
and can lead to financial hardship and difficulty in accessing factor."

New York City Hemophilia Chapter
The New York City Hemophilia Chapter (NYCHC) of the National Hemophilia
Federation plans to use its LEAD grant to develop a von Willebrand disease
awareness program for school nurses in collaboration with the New York City
Board of Education. This program is based on a pilot that CSL Behring
currently supports in the Los Angeles public schools. The 126 school-based
health centers in New York City often serve as the first line of healthcare
for children.Educating school nurses about von Willebrand disease is
important, especially for teenage girls in whom the disease can be overlooked.
In cases of teenage menorrhagia, school nurses may serve as the first line of
referral to a hemophilia treatment center.

NYCHC Executive Director Glenn Mones said, "We're gratified to have received
this LEAD grant which will allow us, working with the Hemophilia Association
of New York, to reach out to schoolnurses in New York City with important
information about bleeding disorders. We applaud CSL Behring for helping
provide chapters and associations with critical funds to advocate for the
needs of the community."

Neuropathy Association
The Neuropathy Association (New York, NY) will use its LEAD grant to extend
the Convio advocacy module, an online constituent engagement solution, for
their website for 2013. This is part of a larger effort to make the
Association website more interactive, allowing their constituents to take a
greater role in public policy and advocacy. The tool will allow the
Association to enhance their grassroots capabilities on important public
policy issues that impact those with neuropathies.

Ohio Bleeding Disorders Council
The Ohio Bleeding Disorders Council (OBDC) is an umbrella organization that
represents five Ohio-based patient advocacy organizations for bleeding
disorders. They are the Southwestern Ohio Hemophilia Foundation (Moraine),
Northern Ohio Hemophilia Foundation (Independence), Central Ohio Chapter of
NHF (Columbus),Northwest Ohio Bleeding Disorders Foundation (Toledo) and
TriState Bleeding Disorders Foundation (Cincinnati).

The OBDC members will use the LEAD grant to conduct their annual legislative
advocacy day. The focus this year is on maintaining the budget line items for
both the Bureau of Children with Medical Handicaps under the Ohio Department
of Health, and the Adult Hemophilia Insurance Premium Program. In addition,
the OBDC will work with the State Medicaid Department to ensure that any
transition of children with bleeding disorders into Medicaid Managed care is
done smoothly.

"Today's ever-changing health care landscape is demanding that the bleeding
disorder community engage in advocacy in ways that it hasn't seen in years,"
said Randi Clites of OBDC. "The Ohio Bleeding Disorder Council is stepping up
its advocacy strategies in the coming year, and it appreciates
thegenerosityand support from CSL Behring through its Local Empowerment for
Advocacy Development grant."

CSL Behring's Senior Vice President, Public Affairs Dennis Jackman said the
difficult economy has impacted patient advocacy groups and put pressure on
patient access to critical therapies. "We recognize the challenges these
organizations face in generating funding for the many worthwhile projects they
conduct to raise awareness of rare and serious medical disorders, and to
advocate for access to care," Jackman said. "CSL Behring remains committed to
helping patient groups affect positive change for people with rare diseases
regardless of the economic climate."

LEAD Grant Application Deadline
LEAD grants are awarded semi-annually. CSL Behring considers grant proposals
which relate to bleeding and platelet disorders, immune deficiencies,
pulmonary disease, critical care and wound healing. The submission deadline
for the next round of grants is April 30, 2013. Applications, specific
criteria for applying and more information are available on the LEAD Grants
page at www.cslbehring.com.

About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed
to saving lives and improving the quality of life for people with rare and
serious diseases, the company manufactures and markets a range of
plasma-derived and recombinant therapies worldwide.

CSL Behring therapies are used around the world to treat coagulation disorders
including hemophilia and von Willebrand disease, primary immune deficiencies,
hereditary angioedema and inherited respiratory disease, and neurological
disorders in certain markets. The company's products are also used in cardiac
surgery, organ transplantation, burn treatment and to prevent hemolytic
diseases in the newborn. CSL Behring operates one of the world's largest
plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL
Limited (ASX:CSL), a biopharmaceutical company headquartered in Melbourne,
Australia. For more information, visit http://www.cslbehring.com/.

Contact:
Chris Florentz
Manager, Corporate Communications
610-878-4316
Christopher.Florentz@cslbehring.com

SOURCE CSL Behring

Website: http://www.cslbehring.com
 
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