Pfizer, NNPA & health advocates address Sickle CellBy Yasmine Regester / August 3, 2018
In North Carolina, Sickle Cell Disease (SCD) affects nearly 6,000 people and occurs in one out of every 360 African American births, according to statistics from U.S. pharmaceutical giant, Pfizer.
Dr. Kevin Williams, Chief Medical Officer of Pfizer’s Rare Disease division discussed the rare genetic disorder at an educational event at the International Civil Rights Center and Museum, hosted by Pfizer and the National Newspaper Publishers Association (NNPA) on July 26.
“There’s no more important issue than the state of our healthcare,” said Ben Chavis, Jr., President of the NNPA and moderator of the program.
In an effort to bring awareness to the disease and the hardships those living with SCD, the public was invited to learn about the disease, connect with local resources, and connect with others impacted by the disease or someone they know.
Afrique Kilimanjaro, managing editor of the Carolina Peacemaker said, “We hope to bring awareness to the journey patients with sickle cell anemia endure, and discuss initiatives taking place here in Greensboro to promote positive patient outcomes.”
Williams went on to explain that SCD is a rare group of inherited red blood cell disorders that causes the red blood cells to contort into a crescent shape rather than disc shaped. The distorted shape inhibits blood flow in the body, causing extreme pain in some cases. In the United States, Sickle Cell Disease is most prevalent among African Americans, although it can be found in people of all races.
“In the U.S., Sickle Cell Disease is a rare disease because it affects around 100,000 people,” said Williams.” It’s a lifelong, chronic, debilitating disease that has an impact on life expectancy.”
According to statistics provided by Pfizer, about one in 14 African Americans have a defective hemoglobin S gene, which means individuals carry the sickle cell trait. Carriers of the trait may not experience SCD symptoms, but can pass the trait on when they have a child. If both parents carry the sickle cell trait, their child has a higher chance of having SCD. Life expectancy is 40-60 years of age, approximately 30 years less than people without the disease.
“It can be an isolating disease because a lot of people don’t understand what you’re going through. We want to raise awareness of the disease and the challenges that people face,” said Williams, who also writes a regular health column on SCD for the NNPA Newswire.
Sickle Cell can be very painful for some and can occur without warning. SCD experts talked about pain management through medication, and how patients may feel stigmatized when doctors or nurses think they are making up symptoms to get medicine. The most recent opioid crisis has hospitals and medical practitioners on high alert to spot individuals who may be misusing prescription pain meds.
Organizations like Piedmont Health Services and Sickle Cell Agency (PHSSCA) work to provide SCD patients and the greater community with outreach, education, screening and case management for people with high-risk health problems. PHSSCA has served North Carolina since 1970, offering services in seven counties: Guilford, Forsyth, Alamance, Rockingham, Randolph, Caswell and Mecklenburg. In addition to sickle cell services, PHSSCA also provides other vital services such as HIV/AIDS education and outreach, child development programs and free wellness clinics.
Kathy Norcott, executive director of PHSSCA, noted that symptoms of the disease manifest around one year of age, but with blood testing, SCD can be diagnosed as early as four months old. Some children may experience early symptoms of SCD that include: painful swelling of the hands and feet, fatigue or fussiness from anemia, or a yellowish color of the skin or eyes.
“Because of newborn screening in North Carolina, within two weeks of life, we are notified of a child who is born within our seven-county area if they have sickle cell disease. We then start educating the parents on sickle cell disease. We work with the family for however long they want us to,” said Norcott.
Dominique and Robert Warren attended the event to get more information for their six-year old son who was diagnosed with SCD at a year old. They said that although his health is up and down, they try to stay positive.
“Having a support team and getting knowledge of the disease is the best thing you can do for your family,” said Dominique.
In order to provide support to children living with SCD, PHSSCA sponsors a week-long Summer Enrichment Camp each year for youth ages 6 through 15 in North Carolina. The camp is designed to allow campers to participate in a variety of recreational activities they may not get to experience otherwise, with other children living with SCD, all in a medically supervised environment.
Overexertion and dehydration can contribute to complications of the disease that can lead to organ damage, anemia, infection and even stroke. Extreme hot or cold weather, certain foods and stress can trigger a SCD crisis. A healthy diet, plenty of rest and regular light physical activity can help ease the complications of SCD. Treatment of mild pain crises can often be handled with over-the-counter pain medication, hydration and heating pads. For more severe pain crises, patients may require inpatient hospitalization or doctor prescribed pain medication.
In most cases there is no cure, however, blood transfusions and bone marrow transplants are considered viable treatments, noted Elaine Whitworth, executive director of Bridges Pointe Foundation.
Bridges Point Foundation is a 23 year-old non-profit focused on providing education and support services to young adults living with SCD in Durham and Wake counties.
“Patients were beginning to survive well into adulthood, but their understanding of the disease was very limited,” said Whitworth. “We wanted to be supportive of adults. As they get older, the struggles of the disease increase as they attempt to complete an education, hold down a job and raise a family.”
Whitworth also discussed the need for more African American blood donors.
“I recently learned that just in the Triangle, 100 pints are needed each month just for the Sickle Cell patient population. African Americans don’t donate at the same rate as blood donations are needed for people,” she said.
Sen. Gladys Robinson, former executive director of PHSSCA for more than 30 years, noted that while there is some funding in grants and loans available to SCD organizations, it is also important to provide advocacy at the state legislature for funding and education.
“We want to make sure that sickle cell disease gets the same attention as other diseases,” said Robinson. “We want to make sure they can be contributing adults, living full lives. That’s what we want for people living with sickle cell disease.”
Contact Piedmont Health Services and Sickle Cell Agency at (800) 733-8297, or Bridges Point Foundation at 919-680-3059.