No one knows exactly how many people in this country have sickle cell disease, where they live or what treatments work best for them. In fact, many people believe it is a “disease of the past,” said Melissa S. Creary, a health scientist with the Centers for Disease Control and Prevention (CDC).
Creary is now working to change all of that, helping to implement a two-year national pilot program to determine the prevalence of sickle cell disease and several other inherited blood disorders, to increase knowledge and awareness of these conditions, to identify how to improve health care delivery and to evaluate whether current programs and interventions are working.
Creary is not an impartial observer. She was diagnosed with sickle cell disease at the age of three, and views the pilot project as a platform for spreading information about the disorder that is named for the sickle-shaped red blood cells of those who have it.
Anyone who meets her will part knowing a little more about the disorder.
“It is my calling to help build a platform so the voiceless can be heard. If I can inform one more person about sickle cell disease, I know I’ve done something that had an impact,” said.
Sickle cell disease is a painful blood disorder that can lead to organ damage, anemia and premature death. Despite improvements in survival rates, life expectancy for those with sickle cell disease remains three decades shorter than the general population.
When President Richard Nixon signed legislation in 1972 for sickle cell screening, counseling, education and research activities, he said, “This disease is especially pernicious because it strikes only blacks and no one else.”
As it turns out, Nixon was wrong, and Creary feels it is important for people to know that the disease is far more widespread.
“When we ascribe sickle cell disease to one race, we make all others invisible and are less effective in treating them,” she said, describing the example of a woman who wasn’t properly diagnosed until adulthood because she was white.
The disease is connected with the presence of malaria, and the “malarial belt” where the trait can be found includes India and countries in Africa and the Mediterranean. That fact, combined with the increasing prevalence of ethnically blended families, is changing the face of the population living with the disorder, although it remains true that that majority of the people living with the disease today are thought to have African ancestry.
Creary started her scientific career in a laboratory setting working on sickle cell disease. But she quickly realized that she wanted to work “more with people and less with cells.”
Within her first year of focusing on sickle cell disease, she helped launch an agency-wide working group that created a community of expertise at the agency.
She also developed award-winning web pages for the agency’s site, created partnerships with health-care providers, researchers and community groups, and published a paper on the disorder that she and colleagues presented at meetings of public health organizations.
“We had a joke that we were on tour,” said Althea Grant, branch chief, Epidemiology and Surveillance Branch, Division of Blood Disorders at CDC. “We went around presenting on that topic to find others interested in working with us.”
The “publicity tour” eventually led to the connection with the National Heart, Lung, and Blood Institute of the National Institutes of Health, which is collaborating on the pilot program along with seven state health departments. Creary and her colleagues hope that a comprehensive registry and surveillance system created for blood disorders at NIH as part of the pilot program will provide new data and knowledge about sickle cell disease that may lead to new treatments.
“That is her legacy, already, in just a few years,” said Grant.
This article was jointly prepared by the Partnership for Public Service, a group seeking to enhance the performance of the federal government, and washingtonpost.com. Go to http://washingtonpost.com/wp-srv/politics/fedpage/players/ to read about other federal workers who are making a difference.