CSL Behring recently awarded seven Local Empowerment for Advocacy Development (LEAD) grants totaling more than $90,000 to patient advocacy organizations in the United States. The seven grants represent the initial round of awards in CSL Behring’s LEAD program. More

Article II: Protecting the Florida Alpha-1 Screening and Detection Program

During the 2008 legislative session Florida faced a $3.4 billion deficit. Like most states, Florida is legally barred from running a deficit or borrowing to cover its operating expenditures. As a result of this fiscal crisis, lawmakers had three basic actions to choose from: draw down reserves, cut expenditures, or raise taxes. More

Article III: Congress Approves Medicare Bill Over Presidential Veto

In mid-July, the US House and Senate overrode President Bush’s veto of the Medicare Improvements for Patients and Providers Act. More

Article IV: Senate Committee Approves Language for Alpha-1 Treatment Guideline

On June 26, the Senate Appropriations Committee approved funding for the Department of Health and Human Services, including the National Institutes of Health (NIH). More

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Spring 2008

Article I: Senator John Kerry Introduces IVIg Access Legislation

CSL Behring is committed to improving patient access to care by providing decision makers with the information necessary to develop appropriate public policies. The United States version of Policy Impact periodically reviews U.S. policy trends and developments. More.

Article II: Building Awareness and Access to Care Through Partnership

Since hemophilia and von Willebrand Disease (VWD) are diagnosed in only a small percentage of the population awareness and understanding of these conditions and their treatment is low. More.

Article III: In California…

Organizations that effectively influence public policy develop partnerships with the government. In this way policymakers and their staff seek the advice and input of these partners as they deliberate changes to public policy. More.

Article IV: ...and in Minnesota

As part of nationwide efforts to build support for standards of care legislation, a coalition of patient advocates attended a legislative day on April 23, 2008 at the State Capitol in St. Paul, Minnesota. More.

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Winter 2008

Article I: CSL Behring Launches Local Empowerment for Advocacy Development (LEAD) Program

The Local Empowerment for Advocacy Development (LEAD) Program is a novel program that will allow CSL Behring to partner with local patient organizations in the pursuit of advocacy initiatives. CSL Behring believes that successful advocacy results from the empowerment of those that are impacted by the issue being addressed. Many public policies that affect the users of blood plasma and recombinant therapies are now typically being developed at both the state and federal level; therefore, local organizations need to develop the capability to address this pressing need. More.

Article II: Three States Preserve Access to Care

The bleeding disorders community in Alabama was confronted with such a threat in November 2006 when the Director of Pharmacy issued a letter to hemophilia providers announcing “a change to reimbursement for factor replacement therapies based upon Public Health Service (PHS) rates.” This proposed reimbursement structure would prevent providers without access to PHS pricing from serving their patients enrolled in the state Medicaid program. A coalition of concerned stakeholders quickly came together to confront this threat. Not only did the stakeholders meet the challenge, they turned the threat into an opportunity to achieve two very important victories for people living with bleeding disorders enrolled in Alabama Medicaid. More.

Article III: Congress Approves Limited Medicare Bill

In one of the last acts of their 2007 session, Congress passed Medicare legislation that delayed pending cuts to Medicare physician reimbursement.

Due to major differences of opinion between the Democratic leadership in the House and Senate and veto threats from the Bush Administration about the costs of more expansive proposals, Congress was only able to agree on a narrow piece of legislation. A key provision of this legislation was a 6-month temporary increase of 0.5% in Medicare reimbursement for physician administration of therapies, including intravenous immune globulin and Alpha1 proteinase inhibitor. More.

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Fall 2007

Article I: As Proven in Illinois—People Matter

The Hemophilia Foundation of Illinois (HFI), historically active in its interaction with policy-makers, has a winning grassroots strategy designed to engage, organize and mobilize the bleeding disorders community. HFI’s efforts were rewarded on July 2, 2007, when Illinois Governor Rod Blagojevich signed legislation amending the Illinois Hemophilia Care Act to reinstate the Hemophilia Advisory Review Board. This legislation establishes an official body to advise the State on policy issues that affect the health and wellness of people with bleeding disorders. More.

Article II: Hemophila Standards of Care Bill Has Two Hearings in Pennsylvania

In September 2007, Representative Anthony DeLuca, chairman of the Pennsylvania House Insurance Committee chaired two hearings about the proposed Pennsylvania Hemophilia Standards of Care Act. The hearings took place at the Hemophilia Treatment Centers (HTC) located at the University of Pittsburgh and the Hershey Medical Center. These hearings featured testimony from the Executive Directors of the two state hemophilia patient organizations and the directors of the two HTCs. Additionally, each hearing featured a man with hemophilia, a parent of children with bleeding disorders and a woman with VWD. All the speakers advocated for this legislation. More.

Article III: U.S. House Committee Chairs Pledge Assistance on IVIg Access

In late July 2007, U.S. Representative Kevin Brady (R-TX) offered H.R. 2914—The Medicare IVIg Access Act—as an amendment to the State Children’s Health Improvement Act reauthorization, which was under consideration by the House Ways and Means Committee. Representative Brady entered into a colloquy with the Chairman of the committee, Charles Rangel (D-NY), the Health subcommittee Chairman, Pete Stark (D-CA) and the ranking Republican on the committee, Jim McCrery (R-LA) regarding his amendment. More.

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Spring 2007

Article I: The Deficit Reduction Act of 2005 and its Impact on Medicaid

On February 8, 2006, President Bush signed into law the Deficit Reduction Act of 2005 (DRA). The DRA includes net reductions of $4.8 billion over the next five years from Medicaid, the program that partners with states to provide health coverage and long-term care assistance to over 39 million people in low-income families and 12 million elderly and disabled people. Users of plasma therapies rely on Medicaid as a form of insurance, including approximately one-third of Americans with hemophilia. More.

Article II: Preserving Medicare Access to Plasma Therapeutics in 2007

Medicare is the federal insurance program available for individuals who are 65 years of age or older and those classified as disabled. Many individuals who rely on plasma therapeutics qualify for Medicare due to disability. Therefore positively impacting Medicare policy is a central role for CSL Behring and its public affairs team. More.

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Summer 2007

Article I: Increased Support for Legislation Improving Access to Medigap for the Disabled

On March 1, 2007, U.S. Representatives Phil English (R-PA) and Bobby Rush (D-IL) introduced the Medigap Access Improvement Act (HR 1282). This legislation would create a national requirement for private insurers to make available Medigap supplemental insurance plans for purchase by Medicare beneficiaries who are disabled. At present, there is such a requirement for Medicare beneficiaries who qualify due to age, but no similar requirement for the disabled. Most users of blood plasma and recombinant therapies who qualify for Medicare do so because they are disabled. More

Article II: Partnering with Patients

2007 began a new legislative cycle and a new opportunity to educate state lawmakers about plasma protein therapies, differentiate this industry from “big pharma” and help lawmakers understand the special needs of individuals who use these life-saving therapies. CSL Behring has worked closely with consumers, families, providers and industry to ensure access to the highest quality of care. More

Article III: Medicare Creates Individual IVIg Reimbursement Codes; Legislation Sought That Will Improve Access

For nearly three years CSL Behring has been working in collaboration with patient advocacy organizations such as the Immune Deficiency Foundation, Jeffrey Modell Foundation, GBS/CIDP Foundation International and other stakeholders to address the existing IVIg access problem for Medicare beneficiaries. These problems have been largely caused by insufficient Medicare reimbursement for IVIg. More

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Winter 2006/07

Article I: Democrats Win Control of Congress

History was made in the recent elections as the Democrats swept into power by winning majorities in both the United States Senate and the House of Representatives for the first time since 1994. The election results mean that Democrats will chair and have majorities on every congressional committee, including those with oversight for healthcare and the Medicare program. More.

Article II: Change: At the State Level

One word describes the 2006 elections— CHANGE. This election reverses more than a decade of Republican control of the majority of state capitols. Democrats took control of one or both legislative chambers in at least eight states. They will hold the majority in both houses of 25 legislatures, up from 19. Republicans will control both chambers in 14 state legislatures, down from 20. There are 10 states with split control (one body Republican/the other Democrat), including a dead-even tie in the Oklahoma senate. More.

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