Dignity Health | St. Rose Dominican | Reach | Fall 2019

StRoseHospitals.org  5 Who gets sickle cell disease? Sickle cell disease affects millions of people throughout the world. It is particularly common among those whose ancestors came from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America), Saudi Arabia, India, and Mediterranean countries (such as Turkey, Greece, and Italy). SCD can cause pulmonary hypertension, jaundice, extreme fatigue, delayed growth and development, and episodes of severe pain. “Signs and symptoms of SCD usually begin in early childhood and cause a number of life-threatening or life-altering complications,” says Chike Nzerue, MD, MBA, FACP. The exact number of people living with SCD in the United States is unknown, but it is estimated that 1 in 13 black or African American babies is born with the SCD trait. It affects about 100,000 Americans, including 1 in 365 black or African Americans and 1 in 16,300 Hispanic Americans. After AB254 was approved by the committee, the bill went on to pass both the state Assembly and state Senate and was signed into law by Gov. Steve Sisolak. of people with SCD, that does not mean they should not be counted and have the same access to care as someone with a more common disability.” At a community barbecue last summer, Gina was fortunate to meet Nevada Assemblywoman Dina Neal, who was working on an SCD bill for the upcoming session of the Nevada Legislature. “I felt very strongly about making sure that this lost population was lifted up and that their comprehensive care needs were taken care of in the system,” says Assemblywoman Neal. “I knew if I didn’t do anything statutory, the gains we had made in the interimwould be lost.” Rising to the challenge After a visit to the Siena Campus emergency department with Gia in January, Gina reached out to St. Rose Dominican to discuss the challenges and treatment needs of SCD patients. Chike Nzerue, MD, MBA, FACP, Chief Medical Officer for Dignity Health–St. Rose Dominican, was sympathetic to her frustrations and concerns. As a physician and a parent, he understood. His own son has SCD. “Not enough attention has been paid to this disease,” says Dr. Nzerue. “Due to the lack of knowledge in the medical community about the disease, these patients don’t always receive appropriate, timely care, and their pain is often left unmanaged.” Dr. Nzerue was also aware that this issue needed further guidance fromNevada health officials and asked Dignity Health Government Relations Director Katie Ryan, the hospital’s top public policy expert, to join the discussion. “When we met Gina and learned more about her situation and her mission at the Nevada Legislature, we were happy to lend our support,” Ryan says. “We wanted to make sure that not only legislators but other advocates as well knew St. Rose Dominican was on their side on this issue.” Testifying for change Dr. Nzerue and Ryan both pledged to be by Gina’s side when the SCDmeasure went before the Legislature. Along with Gina, Dr. Nzerue was on the witness list when AssemblywomanNeal’s bill came up for a hearing. “The day of the hearing, I was expecting it to be just me and two other advocates—Gia’s doctor and Dr. Nzerue,” Gina recalls. She was surprised and elated to find the room filled with supporters. The bill they testified in favor of, AB254, would create the process for gathering data for Nevada to better assess patient needs, raise awareness, and make clinicians more familiar with protocols regarding care for SCD patients. It also outlined who pays for treatment. “There aren’t a lot of terrific days in the Legislature, but the day this bill passed out of committee was one of them for me,” says Assemblywoman Neal. “It was a highlight of the session to propose and craft this legislation, then hear Gina and Dr. Nzerue give their heartfelt testimony and convince committee members it deserved their support.”