Press Release: Launch of Multi-State Pilot Program

 

 

Cure HHT to Present Congressman David E. Price with its

"Champion Award" at launch of Multi-State Pilot Program

Headquartered at UNC Chapel Hill

 

Cure HHT has been partnering with the Center for Disease Control and Prevention (CDC) for over a decade.  Through this relationship and ongoing meetings, the HTC / HHT concept was born.  Cure HHT's advocacy efforts, along with the support of Congressman David Price, resulted in federal funding for a two year, multi-state pilot program involving three Hemophilia Treatment Centers (HTC) in underserved areas of the country. 

 

Chapel Hill, NC - On Thursday, August 24 at 5:00pm at the Carolina Club at UNC, Chapel Hill, Cure HHT, the national advocacy organization for people with the rare hereditary disease HHT, will present its' “Champion Award” to Congressman David E. Price (D-NC, 4th District) for his leadership in securing funding of a new HHT multi-state pilot initiative.  Prior to the event, the Congressman along with Cure HHT Executive Director Marianne Clancy and UNC Chapel Hill HHT Center Director Dr. Raj Kasthuri will tour the UNC HHT Clinic and meet some of the patients.

Cure HHT recently celebrated 25 years of building awareness of HHT, educating the public and medical professionals, leveraging funding for research, and advocating for patients and families affected by the disease.  In order to provide expert, multidisciplinary care for people with HHT, Cure HHT has helped establish 25 Centers of Excellence in North America over the last 2 decades.

While Cure HHT will continue to build the number of its Centers of Excellence, working with Dr. Kasthuri it proposed a pilot program where three Hemophilia Treatment Centers would receive guidance and training to allow them to serve HHT patients as well. If successful, this could potentially expand access to care significantly for HHT patients, especially in areas where no HHT Center of Excellence exists.

All that was needed was the funding to make the pilot program a reality.  Enter Congressman David Price who made securing federal funding for the pilot program one of his three top legislative priorities.   “I was inspired by the leadership of the team at UNC and Cure HHT in their efforts to leverage existing infrastructure to bring comprehensive care to an underserved community of patients,” said Rep. Price. “I’m optimistic that a successful pilot program will serve as a model for communities across the country to bring awareness and treatment to those affected by this disease.”

In many ways the treatment and management of HHT can be compared to treatment for hemophilia, the hereditary condition where the blood fails to coagulate.  Due to the efforts of The National Hemophilia Foundation, created in 1948, there are currently more than 130 federally funded Hemophilia Treatment Centers in the U.S.  Many of these have teams of doctors and specialists such as hematologists, genetics counselors and nurse coordinators.

“Unfortunately our current Centers of Excellence can’t reach everyone affected by the disease,” comments Cure HHT’s Executive Director Marianne Clancy. “There is so much more work to be done on this disease.  Due to lack of awareness by both the public and medical providers, it can take as long as 30 years for someone to be properly diagnosed.  Only ten percent of the people who have HHT are aware of it.”

 

Cure HHT is excited to begin this new endeavor. By partnering with the CDC, Congressman Price, three Hemophilia Treatment Centers and UNC Chapel Hill HHT Center, the possibility of providing knowledgeable care to HHT patients in all fifty states becomes attainable. Thank you to all constituents who have supported Cure HHT's efforts over the last twenty years. Without you, this project and future projects would not be possible.