By Janeal Downs
Imagine an unbearable and chronic pain: the feeling of someone taking a baseball bat and hitting it against you on a repeated basis for hours and days on end. This is how Shirley Johnson, cheap research program manager and patient navigator supervisor at Virginia Commonwealth University (VCU) Division of General Internal Medicine, sick described the pain of a person when they are in crisis and suffering from Sickle Cell Disease, prostate a disease which affects approximately 100,000 primarily African Americans in the United States. Johnson said many of the people who suffer from the disease manage their pain by taking opiates, but as they get older the disease can attack major organs and people have the potential of having strokes. In 1972 the average sickle cell patient lived for about 18 years but she said with research and a new medicine, Hydroxyurea, there have been patients in clinics who live to see their late 60’s. In August 2012, the VCU Division of General Internal Medicine was awarded a five year grant of 3.1 million dollars from the National Institute of Health to research the disease and also attempt to make patients more adherent to the medication Hydroxyurea.
Still in the early stages of gathering research Johnson described the two parts of the grant. First the team will use patient navigators from around the commonwealth to find patients who are not receiving special care and try to enroll them into special care. “We feel that patient navigators are extremely important at helping to reduce overall emergency room and hospitalization plots for chronic diseases across the board… versus utilizing the emergency room or becoming so sick that they end up in a hospital, thus increasing our hospital care cost,” Johnson said. The second phase of the grant is meant to help patients navigate through their health care better, make people work-compliant with their medical care, help people remain on Hydroxyurea, or encourage them to get on the medication. Johnson said Hydroxyurea is currently the only F.D.A drug approved for people with Sickle Cell Disease.
In Virginia, all newborn babies are tested despite their race, since 1989. The Virginia Department of Health notifies the family and tries to work with the child to receive treatment at four pediatric comprehensive centers. However, Johnson said sometimes families don’t understand the notification, there are families who move and don’t receive the notification, and sometimes there are people born before 1989 who don’t show symptoms until they are in their 30’s and 40’s. “We work so closely with VDH to make sure that these children who are screened and found to have this disease, that they are notified to try to get into the pediatric centers that we have,” Johnson said. Johnson said there is a one in four chance that the disease is passed down from a mother and father who carry the trait. Though the disease primarily affects African Americans in the United States, Johnson said it is also a disease found in Middle Eastern and Mediterranean populations.
Johnson began working at VCU developing a transition program for patients between 15 and 20 years old, when they were leading up to adult care in therapeutic centers. “I really just developed a great passion for the people that I met; I find that they’re very resilient and even though they live very complicated lives with a lot of pain and medical crises, they still try to have jobs, and they still try to have families, and they still try to live a quality of life that all of us want to have,” Johnson said. She said it is important to continue getting this work done and she said she has enjoyed working with Dr. Wally Smith, the primary investigator, and other researchers. Johnson described the disease as “an underfunded, under recognized disease across the country.” She said funding and research are important for treatment and making people aware of the importance of knowing their genotype. She encouraged anyone who may have the disease to contact the center at 1-855-247-9531.