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Bleeding disorders advocates host patient fly-in and congressional reception


Bleeding disorders advocates host patient fly-in and congressional reception

PR Newswire

WASHINGTON, June 10, 2018 /PRNewswire-USNewswire/ -- Hemophilia Federation of America is hosting a Patient Fly-In and Virtual Hill Day June 12, giving patients the opportunity to meet lawmakers to voice their healthcare needs.

"We have an amazing opportunity to participate in the process and let our elected officials know what our community needs in quality, affordable coverage," says Kimberly Haugstad, CEO and President of HFA.

Patients are asking lawmakers, in person and virtually, to preserve important consumer safeguards, keeping protections for people with preexisting conditions, coverage of an appropriate scope of health benefits, no annual or lifetime caps on coverage, appropriate limits on patient out-of-pocket spending, and effective safety net coverage for those who need it.

"The patient protections put in place by the Affordable Care Act are as important today as when the law was enacted. We are here to remind lawmakers that meaningful healthcare coverage provides people living with bleeding disorders the opportunity to be contributing members of our broader communities and to pursue our dreams," says Kim Isenberg, Vice President of Policy and Advocacy at HFA.

HFA will be supporting Restoring the Patient's Voice Act, H.R. 2077. This bill creates guardrails to protect patients facing potentially harmful step therapy protocols. Step therapy is a cost cutting strategy whereby insurers require patients to take and "fail" on a listed medication before given access a non-preferred therapy.

Step therapy is particularly problematic in the hemophilia context, since hemophilia medications are biological products. They are not therapeutically equivalent or interchangeable, and no generic versions exist. Prescribing the right medication is a complex exercise between the doctor and patient. Removing barriers to access will protect patient health and lower treatment costs.

Following the fly-in, HFA will host a congressional reception and will honor two members of Congress who have worked on behalf of people with chronic and expensive disease. The honorees are:

Rep. Joe Crowley (NY), who has worked to make insurance available and affordable to all and has fought to defend the insurance protections of ACA. Rep. Crowley is the founder and a past co-chair of the Rare Disease Congressional Caucus. Earlier this year he rose to recognize World Hemophilia Day, stressing the importance of working for accessible, affordable treatment for anyone living with bleeding disorders.

Rep. Ryan Costello (PA), who has also emphasized health care during his years in Congress. A member of the Rare Disease Caucus, Rep. Costello has advocated for more funding for medical research generally and for the study of rare diseases in particular. He defended the National Institutes of Health against proposed budget cuts in 2017, noting the value of its work and research.

About Bleeding Disorders

Bleeding disorders, most commonly hemophilia and von Willebrand disease, are genetic disorders that impair the body's ability to clot blood properly. Patients rely on prescription clotting factor medication to avoid painful or life-threatening internal bleeding episodes which can lead to joint and muscle damage and even death. Medications are extremely effective and allow individuals to lead healthy, productive lives. People with bleeding disorders obtain treatment from hematology specialists or federally-funded hemophilia treatment centers.  

About HFA

Hemophilia Federation of America is a national nonprofit organization consisting of more than 45 member organizations and numerous individual members who offer assistance, education, and grassroots advocacy on behalf of the bleeding disorders community. Incorporated in 1994, HFA provides programs and services to improve the quality of life and access to care for persons with hemophilia, von Willebrand disease and other rare bleeding disorders. For more information, visit our website at, email, or call 202.675.6984.

Contact (for press, not for publication):

Sonji Wilkes, Associate Director of Policy
303.887.2600 |

Or Emily Roush-Bobolz, Communications Manager
515.491.6508 |

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SOURCE Hemophilia Federation of America

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