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NICHQ CEO Testifies at Boston City Council Hearing on Sickle Cell Disease

June 6, 2013

NICHQ President and CEO Charles Homer, MD, MPH, was one of nine panelists who testified before the Boston City Council’s Committee on Labor, Youth Affairs and Health on June 6 about the need for greater support for patients with sickle cell disease (SCD).

SCD is an inherited disorder that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. The disease affects millions of people throughout the world and is the most common inherited blood disorder in the United States, according to the Centers for Disease Control and Prevention.

Organized by the Greater Boston Sickle Cell Disease Association (GBSCDA), panelists testified on behalf of a resolution proposed by City Councilor Charles Yancey calling for the committee to research resources and services available to patients with SCD. Committee members heard panelists describe the characteristics of and treatments for SCD, the inequalities in funding for research and support, legal issues, accessibility to treatments, and the effects of SCD on the community. Speakers urged the city to consider stable funding, better access to healthcare and social services, expanded programs, and increased education and awareness for sickle cell disease consumers, families and programs.

The Rev. Ronald Stephenson, founder of the GBSCDA, talked about his 20 years witnessing devastation caused by SCD to patients and families. “They need services; they need to know they have access to good healthcare; they need to know they can have a good quality of life; and they need to know they are in a city that really cares for them,” said Stephenson.

Homer demonstrated how care for patients with SCD can be improved dramatically with a concerted focus on quality improvement. He highlighted how teams at treatment centers across the country have reduced the time patients wait for effective pain treatment in the emergency department. Similar efforts have increased use of hydroxyurea, an important preventive treatment.

“For many, the treatment is slow, ineffective and not respectful,” said Homer. “This hearing was an inspiring and moving reminder of the great needs these families face and the potential and the hope that a new approach brings.”

Many families with children diagnosed with SCD came to share their stories. Accounts by several mothers who spoke about the challenge of having to watch their young children suffer through pain episodes that are medically comparable to heart attacks, visibly moved the committee members.

“People don’t understand. It’s a struggle every day to fight for my education and my dreams,” said Kelsey Taylor, 19, who talked about how difficult it is to live with SCD pain every day.

Councilor Yancey vowed to sponsor a line item through the Boston Public Health Commission to obtain funding for sickle cell awareness, special hospital facilities for those experiencing a sickle cell crisis, and other actions to improve quality of life.

“I would hope the outcome of these testimonies, the hearing and the legislation is that there will be more resources focused on support services for this community, combined with attention to programs to measure and improve care,” said Homer.

Watch the committee hearing in its entirety.

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