Harris advocates for funding to find a cure for sickle cell disease

HARRISBURG, May 7 – A group of organizations joined state Rep. Jordan Harris, D-Phila., to advocate for patients suffering from sickle cell disease and ask for support for science and clinical research.

"People of color are suffering from sickle cell disease and their needs are going under the radar. We can no longer allow sickle cell to go unnoticed, questions to go unanswered and research to go unfunded," Harris said last week at the Capitol event. "My commitment, as the chairman of the Pennsylvania Legislative Black Caucus, is to provide support to individuals and their families whose lives have been touched by the disease."

Sickle cell anemia is a serious blood disorder that causes acute pain, severe anemia, infections and vascular blockages that can lead to widespread organ damage and death. It is a genetic disease, affecting 2 million Americans, most often African-Americans and Hispanics. Until the past few decades, most people with sickle cell disease did not live beyond young adulthood, but advances in treatment have improved and lengthened the lives of patients who have access to good medical care.

Rep. Joanna McClinton, D-Phila, said, "This budget season, funding for sickle cell research is a priority. It’s our responsibility to provide the best health care available to patients when they need it and have it delivered in a way that provides the best outcomes because being born with sickle cell disease doesn’t mean that you need to limit your future."

Rep. Ed Gainey, D-Allegheny, said, "As an inherited blood disorder, many of us already know that sickle cell is a devastating disease that most commonly affects African-Americans. While there is no cure, it is imperative for us to continue to support those living with the disease by spreading awareness, provide education regarding stem cell or bone marrow transplants, and continue to give to organizations that help those living with sickle cell."

Organizations who attended are members of the Sickle Cell Providers Network: South Central Pennsylvania Sickle Cell Council, Hershey Medical Center, Sickle Cell Disease Association of America, Sickle Cell Children’s Foundation, United Neighborhood Facilities Health Care, Children’s Hospital of Pittsburgh, Children’s Hospital of Philadelphia, Comprehensive Sickle Cell Center, St. Christopher’s Hospital for Children, Marian Anderson Comprehensive Sickle Cell Center, Pennsylvania Hospital, Oncology/Hematology Associates, Thomas Jefferson University Hospital and Cardeza Foundation.

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