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Stepping Up for Sickle Cell

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Garble Head ShotSpecial to the Philanthropy Journal  

By Martin Grable

Life-saving blood is an essential community resource. Contrary to what many people may think, blood products are used more frequently in the treatment of cancer, heart disease, and other illnesses like sickle-cell than for trauma or disaster. This is why the Community Blood Center of the Carolinas (CBCC) is deeply committed to being champions of life-saving blood for local patients. We are an independent, locally-managed, non-profit community blood center and a member of America’s Blood Centers. As the primary blood supplier to the region’s patients and hospitals, we subscribe to a community-based blood banking philosophy whereby our donors know that the blood they give stays in our community first – helping family members, friends, and neighbors. CBCC Logo

We are also dedicated to building and strengthening the bonds of our community through innovative partnerships and collaborations. One such initiative is to help ensure sickle cell patients receive the blood they need. More than half of all persons with sickle cell will require a blood transfusion in their lifetime and the majority will require multiple transfusions over their lifetime, using an average of four units per month. Studies indicate there are about 90,000 people in the United States with sickle cell disease; 98 percent of those being African American.

Although sickle cell is not unique to African Americans, it is more frequently diagnosed in the African American patient population in the U.S. These patients often need regular blood transfusions requiring complicated matching of blood types from donors with similar blood characteristics. Our goal is to help match these patients with ‘Sickle Cell Heroes’ – those hard-to-find matched blood donors.

So in 2014, CBCC and Carolinas HealthCare System’s Levine Cancer Institute helped form the Carolinas Sickle Cell Collaborative (the Collaborative) (#StepUp4Sickle), which includes regional healthcare providers, sickle cell advocacy partners and local African American community leaders. Partners include Carolinas HealthCare System, Piedmont Health Services and Sickle Cell Agency, Sickle Cell Partners of the Carolinas and many other individual community advocates.

The mission of the Collaborative is to cultivate hope, inspire compassion and improve the quality of life for local sickle cell patients in need of specially matched blood. Its goals are to: 1) increase education and awareness about sickle cell disease 2) identify more blood donors suitable for sickle cell patients in our community; 3) increase the number and frequency of donation among these African American blood donors; and 4) involve more African American organizations in hosting blood drives throughout the year. Since the launch of the Carolinas Sickle Cell Collaborative in 2014, CBCC has identified over 1,700 local blood donors who meet the unique qualifications to support the transfusion needs of local sickle cell patients. This was made possible by the joint effort of the Collaborative and community stepping up to meet the needs of local sickle cell patients.

CBCC Gladys Robinson

Dr. Gladys Robinson

The support and involvement we have received throughout the Carolinas to date has been remarkable. Take for example Dr. Gladys Robinson who has been an advocate for sickle cell awareness for 33 years. She serves as the Deputy Minority Leader of the North Carolina Senate, Executive Director for Piedmont Health Services and Sickle Cell Agency, and has also chaired the North Carolina Council on Sickle Cell Syndrome for 12 years. “I know very well the importance of having African Americans who donate blood. Daily we see people who need blood transfusions and your donation only costs a little time,” said Dr. Robinson who was also the chair of the Council on Sickle Cell when the state initiated mandatory newborn sickle cell screening. Another important advocate and driving force in the medical care and treatment of sickle cell supporting the Collaborative is Ify Osunkwo, MD, MPH, a specialist in hematology and sickle cell disease at Carolinas HealthCare System’s Levine Cancer Institute. It is her mission is to improve the quality of life for sickle cell patients through a comprehensive, multi-disciplinary approach to medical treatment.

CBCC O. Ify

Dr. Osunkwo Ify

“Given the fact that sickle cell disease is so prevalent in African Americans, it is very important to educate this community about the impact of sickle cell disease and the urgent need for people to donate blood to support the treatment of acute and chronic sickle cell complications,” said Dr. Osunkwo. “When we need to transfuse patients with sickle cell disease, it’s really hard to find really specific blood that matches them on a very deep level. Having CBCC here, along with the blood that gets donated here and that stays here, increases the available type of specific blood for our patients.”

CBCC Kelsea

Kelsea

In addition to the amazing advocates and partners involved in the Collaborative, it is sickle cell patients like Kelsea who are a constant source of inspiration. Kelsea has struggled with the hardships of sickle cell disease for years, relying on blood transfusions in her treatment.  She is currently taking a year off from pharmacy school to receive a stem cell transplant from her brother with the hopes of becoming sickle cell free. Blood transfusions played a vital role in preparing her body for this groundbreaking procedure. In fact, in the month before her transplant she received 11 units of blood. Now, halfway through the transplant process, she is already seeing results and adds, “I still have a lot of growing and healing to do but, as I say all the time, you just have to take life one day at a time.”


Martin Grable is President and CEO of the Community Blood Center of the Carolinas. CBCC collects blood from the community to return it to the community at the lowest possible cost, consistent with the highest standards of quality. For more information about the Carolinas Sickle Cell Collaborative, visit www.stepup4sickle.org.

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