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There's Still Time to Make Your Voice Heard

On March 7-9, 2007, over 200 individuals affected by bleeding and clotting disorders--a
record number--gathered in Washington for the National Hemophilia Foundation (NHF)
Washington Days 2007. During the three-day meeting, they learned about critical issues
facing the community and then talked about those issues with legislators and their staff, 
putting a face on the bleeding and clotting disorders community. On Thursday, March 8,
when participants met with legislators from their districts, they hit more than 170
Congressional offices—setting another record.

The issue topping this year’s agenda was access to healthcare. Participants urged their
legislators to support and cosponsor H.R.1282, the Medigap Access Improvement Act of
2007. The bill ensures that people enrolled in Medicare in all 50 states will have access to
supplemental insurance policies that cover the 20% co-payment, as well as other
expenses Medicare may not cover. Currently, people who are 65 and older are assured
access to these policies. However, in 26 states those on Medicare because of disabling
conditions, including complications from hemophilia, do not have access.

The bipartisan bill was first introduced in 2006 by Representatives Phil English (R-PA)
and Bobby Rush (D-IL) as a result of joint efforts by a number of organizations, led by
NHF and its chapters, the Committee of Ten Thousand (COTT), the Hemophilia
Federation of America (HFA) and clotting factor manufacturers. It was reintroduced by
Representatives English and Rush in the current session and now has 12 cosponsors,
many as a result of the Washington Days effort.

Community members can still meet with or write to their representative to request their

NHF Washington Days participants also asked legislators to support increased funding
for hemophilia treatment centers (HTCs) to meet the needs of their growing service
populations, including women with bleeding disorders. The HTCs receive a substantial
portion of their funding from the Centers for Disease Control and Prevention (CDC).
However, that funding has essentially remained stagnant for the last 10 years. A number
of legislators agreed to sign a letter from Representative Tammy Baldwin (D-WI)
requesting the funding increase.

Finally, legislators were asked to support the Genetic Information Nondiscrimination Act
(GINA), H.R. 493 and S.358. It prevents employers and insurance companies from
demanding genetic testing or other genetic information, and from using such information
for such purposes as hiring, promoting and setting insurance premiums.  The bill is
important to all people affected by genetic conditions including bleeding disorders. One
of its main benefits is to allow those who have avoided genetic testing because of fear of
discrimination to be able to gain important knowledge that can have a significant impact
on their health and the health of their family. The bill gained bipartisan support last year
but was ultimately held up in committee. This year, under the new leadership, the bill has
already crossed most major hurdles. Passage in both the House and Senate could happen



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