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Local Advocacy

The Texas Bleeding Disorders Coalition connects advocates across the entire state capitalizing on our strength in numbers and our passion to serve the bleeding disorders community.

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Access To Care

All consumers should have access to care at Hemophilia Treatment Centers, access to the full range of FDA approved clotting medications and access to a range of specialty pharmacy providers.

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Raising Awareness

It is important for individuals with bleeding disorders to advocate on behalf of themselves and others.  Advocacy is all about raising awareness, educating and communicating about the needs of our community.

Legislative Update

On January 25th, the Coalition had a group of 52 advocates participate in our 2017 Austin Legislative Day.  Advocates met with their Representatives and Senators, asking them to take the Red Tie Challenge in celebration of March as Bleeding Disorders Awareness Month.  The Coalition was recognized on both the Senate and the House floors.  Many thanks to Representative Sheffield, Senator Paul Bettencourt, Senator Eddie Lucio Jr, as well as Lietuenant Governor Dan Patrick for taking the lead in raising awareness for bleeding disorders.  Advocates also shared information about bleeding disorders with many new legislators.
The TXBDC wrote two letters of support before the start of the session.  The first letter was in support of HB 3742 which allowed third-party payments to be made on behalf of a person for their insurance premiums.  The second letter was to make known our concerns about the new STAR Kids program that could impact our patients access to treatment and specialists.
The Texas Bleeding Disorders Coalition, the Lone Star Chapter of the National Hemophilia Foundation and the Texas Central Hemophilia Association are writing to urge your support of HR 3742 – The Access to Marketplace Insurance Act.  This resolution is vitally important to our fellow Texans.  We would like to thank Representative Shelia Jackson Lee, Representative Marc Veasey, and Representative John Culberson for showing their support of our community by signing on to this bill.

A Centers for Medicare and Medicaid Services (CMS) regulation in 2014 gave Marketplace Insurers the discretion to refuse premium assistance from third-party assistance programs, with the exception of 3 entities:  Ryan White HIV/AIDS Program, Indian tribes and tribal organizations, and Federal and State entities.  Currently, many plans across the country are denying payment from non-profit organizations, denying assistance for many patients who need it most.  Patients with bleeding disorders have exorbitant medical costs, and rely on these assistance programs for access to their care.  Costs for treatment of bleeding disorders can easily be over $300,000 a year, and without access to proper treatment and medication, this care is out of reach.  Without access to care, patients end up in ERs with painful and often life-threatening bleeds, driving up the costs that may go unpaid and eventually be charged to the state.

HR 3742 is a bipartisan bill, introduced by Representative Kevin Cramer (R-ND) in October 2015 that would add non-profit assistance programs to the list of entities insurance plans must accept payment from.  It would prevent insurers from deliberately making Marketplace plans unaffordable and inaccessible for persons with costly medical conditions.

In February, the coalition met to discuss issues facing the bleeding disorder community and start to identify key issues to be addressed during the next 2017 legislative session. Read more

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