Interview with Dr. Hani Atrash of the CDC
October 29, 2008 – Dr. Hani Atrash became Director of the Division of Blood Disorders at the Centers for Disease Control and Prevention (CDC) in June, 2008. CAF recently interviewed Dr. Atrash about his work with the CDC and how it relates to the thalassemia community.
Can you tell us a little about your history with the CDC?
I joined CDC’s 2-year fellowship Epidemic Intelligence Service in 1979, immediately after completing my residency in obstetrics and gynecology at the American University of Beirut. In 1985, I returned to CDC after spending three years in Bahrain as State Epidemiologist and Manager of the Office of Professional Standards and Systems Analysis, and upon completing my Masters of Public Health at Emory University. Between 1985 and 2001, as chief of the Pregnancy and Infant Health Branch, I led CDC’s activities on maternal and infant morbidity and mortality and developed several nationally recognized programs: Safe Motherhood, maternal and child health epidemiology, preterm delivery, and maternal and infant health surveillance and research. I established CDC’s pregnancy mortality surveillance system, the CDC/American College of Obstetricians and Gynecologists Maternal Mortality Study Group, the Annual Maternal and Child Health Epidemiology Conference, and the National Maternal and Child Health Epidemiology Awards. In 2001, I joined the new National Center on Birth Defects and Developmental Disabilities as Associate Director for Program Development where I coordinated and led activities related to global health, workforce development, women’s health, relationships with national organizations and state and local health departments, and minority health. Between 2004 and 2008, I spearheaded the new CDC initiative on Preconception Health and Health Care.
What are some of the specific responsibilities of the Division of Blood Disorders?
The Division of Blood Disorders is one of three divisions within the National Center on Birth Defects and Developmental Disabilities (NCBDDD). Our primary mission is to provide leadership in efforts to prevent blood disorders and improve quality of life for those impacted by blood disorders through public health research and prevention services. These blood disorders include, but are not limited to: hemophilia, thrombophilia, thalassemia, hemochromatosis, Diamond Blackfan Anemia, sickle cell disease and bleeding and clotting disorders that specifically affect women. The division collaborates with health-care providers, academic centers, community-based organizations, and national and international preventive health agencies to implement specialized prevention programs for persons with these blood disorders and their families. A key activity involves collaborating with networks of specialized health-care centers throughout the United States. Currently the division has four high-priority goals:
o To identify risk factors through evidence-based research and surveillance and implement interventions to prevent complications of thrombosis and thrombophilia.
o To prevent and reduce complications of bleeding and clotting disorders that specifically affect women’s health.
o To develop and deliver consistent prevention education messages to encourage affected persons to make informed decisions about their own health care. And
o To enhance blood safety to prevent the transmission of infectious diseases to persons being treated with blood products.
Thalassemia, of course, falls under the purview of the Division of Blood Disorders. Have you previously had much exposure to issues related to thalassemia?
Thalassemia is such an important topic for the CDC and I am excited about my new role as Director of the Division of Blood Disorders. I worked with patients with thalassemia and their families during my medical training and residency at the American University of Beirut Medical Center. More recently, as Associate Director for Program Development with NCBDDD, I worked closely with the Division of Blood Disorders on developing national blood disorders programs including sickle cell disease, venous Thromboembolism and thalassemia. I am eager to continue working with the community to ensure positive health outcomes and quality of life.
You know of the CDC’s thalassemia-based prevention and education programs. One component of that program is the Thalassemia Data and Blood Specimen Collection System (often colloquially referred to in the thalassemia community as the thalassemia-based blood safety and surveillance program.) What is your view of the importance of this program?
Thalassemia patients are among the largest consumers of red blood cells in the United States. Due to the necessity of frequent blood transfusions, persons
with thalassemia are at increased risk for exposure to transfusion transmissible infections. Although blood donors are screened for a number of known infectious diseases, it is possible that new infectious agents or those undetectable with current technology would be missed by this screening. An example is the West Nile virus (WNV), which was discovered to be transmissible through blood transfusions in 2002. At that time, no screening test for this virus was available and it was not known how much transmission of this infection had occurred through the blood supply.
CDC established the Thalassemia Data and Blood Specimen Collection System for the early detection, management and control of known and other yet unknown infections that might be transmitted through blood transfusion. This system was modeled on the Universal Data Collection program used in hemophilia. So that information about the occurrence of blood-borne, viral diseases could be universally and uniformly collected, patients receiving care at seven CDC-funded Thalassemia Treatment Centers (TTCs) are asked to voluntarily provide a blood specimen annually that will be tested for free at CDC for the presence of hepatitis, HIV, WNV or other blood borne viruses. After testing, the remainder of the blood specimen is used by CDC to establish a serum bank for possible future use in facilitating rapid investigation of emerging blood-borne agents and evaluating the safety of blood products used by persons with thalassemia.
The Thalassemia Data and Blood Specimen Collection System also includes the collection of treatment and outcomes data related to the complications associated with thalassemia including iron overload, alloimmunization, abnormal cardiac and liver function, endocrine and bone disorders, and fertility. An extremely important additional benefit of patient participation is that information from this system will also be used to define subgroups of the population at high risk for complications and to develop and monitor the effectiveness of interventions designed to address our mandate from Congress, which is to reduce or prevent the complications of thalassemia.
As the new director, how do you view the future of this blood safety and surveillance program? Are there any changes/improvements that you would like to see in the program?
It is anticipated that the Thalassemia Data and Blood Specimen Collection System will continue into the foreseeable future as CDC continues its prevention activities for the thalassemia population. We would like to see the program expand to include other TTCs and their satellites. We would also like to provide monitoring for emerging blood pathogens outside of the ones we have traditionally monitored as the need arises. Thus, we are currently evaluating whether additional pathogens need to be included in our monitoring system.
As part of the Cooley’s Anemia Foundation’s collaborative arrangement with the CDC, we are initiating a series of focus groups with patients in order to better understand factors that may impact upon positive health outcomes for the patient population. Can you discuss the importance of such focus groups and of the need for such information?
The Cooley’s Anemia Foundation’s work with focus groups is an extremely important step to better define the patients’ experiences and perceptions of factors that impact their health outcomes. This information will be used as a guide and a foundation for developing new targeted patient services, as well as educational and training tools for providers, patients and communities. For example, by talking directly with people living with thalassemia, CAF will learn more about why people follow treatment guidelines and recommendations to prevent complications of thalassemia while others find it very difficult to do so. CDC expects the information obtained from these focus groups to have broader implications and help develop messages and interventions that can be applied to other chronic disease groups.
Is there anything you would like to say to the thalassemia community