Raise Your Voice! and Standards of Care
|
| South Carolina Representative Tommy Stringer, whose son has hemophilia, addressed the Raise
Your Voice! event hosted by Hemophilia
of South Carolina |
Many political pundits have credited
America’s youth and their increase in
voter turnout in the 2008 election for
significantly impacting its outcome.
Just as youth were mobilized to vote in 2008, they are becoming empowered to bring their voices and stories to their state capitals. Twelve teen and young adult members of Hemophilia of South Carolina did just that when they joined with other members of the bleeding disorders community to educate legislators in Columbia, South Carolina on March 16 and 17.
Hemophilia of South Carolina
partnered with the CSL Behring
Raise Your Voice! youth advocacy program
to bring the teens and young adults together. Raise
Your Voice! emphasizes that teens and young adults:
- Have the power to positively impact their own future
through advocacy
- Can educate lawmakers, business and community opinion leaders and the media about the value of
plasma protein biotherapies; and
- Already have the most powerful advocacy tool—their
personal story!
As participants of Raise Your Voice! the teens and young
adults took part in an evening seminar where they learned about the political process, were provided with
the tools and training for sharing their personal stories and heard from South Carolina State Representative
Tommy Stringer, whose son has hemophilia.
CSL Behring’s third Raise Your Voice! event was a great
success! The participants were engaged, thoughtful respectful and supportive of one-another, worked hard and shared compelling personal stories. Every participant took advice from their peers and by all accounts had
productive meetings with their legislators.
CSL Behring Supports Standards of Care Efforts Across the United States
Many have asked whether the recently enacted federal health care reform legislation would impact the standards
of care initiatives. The short answer is it does not. Health Care Reform covers many key high level issues that will certainly increase access to coverage for persons with rare
and chronic conditions. However, pending rulemaking and additional state action, it does not get down to
the level of ensuring access to all approved brands of therapies, access to all sites of service and access to all
licensed providers.
|
| Maryland Delegate Marvin Holmes, the primary sponsor of the Maryland Standards of Care legislation, watches as the bill is formally introduced. |
Standards of Care legislation continues to be a priority for many local patient advocacy organizations and CSL Behring. Standards of Care would help to ensure that people who need life-saving plasma protein therapies would have access to all therapies, delivery of those therapies, related equipment, supplies and a full range of services. In 2000, New Jersey was the first state to introduce Standards of Care legislation, specific for bleeding disorders. Bills were eventually introduced in Pennsylvania
and Minnesota and momentum has built over the past two years. Now eight states have legislative initiatives to
improve access to care: Alabama, California, Connecticut, Maryland, Massachusetts, Minnesota, Missouri, and
Pennsylvania. Local patient advocacy organizations in other states not listed have also expressed an interest in developing such legislative standards.
Raise Your Voice! continues to be instrumental in helping
to identify future leaders and to give them the tools they need to be effective advocates. With persistence and continued dedication on the part of the community, more states will enact this legislation in the future.
kim.isenberg@cslbehring.com / ryan.faden@cslbehring.com
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Public Policy Newsletter - US Q2 2010 (PDF, 561 KB)