Minnesota is one of seven states receiving a federal grant to study the prevalence and treatment of sickle cell disease, an inherited blood disorder that causes extreme bouts of pain and can lead to early death.
Every year Minnesota's newborn health screening program identifies about 30 children who are born with sickle cell disease, but the total number of children and adults who have the illness is a mystery because there is no central registry.
Public health officials and advocates say getting more information will help them identify gaps in care so treatment and support services can be improved.
"Even though we have small numbers, we know in Minnesota that there are disparities and those need to be addressed," said Jennifer Hauser, a public health nurse at the Minnesota Department of Health. She noted that people with sickle cell disease live an average of 20 years less than those who do not have it.
While Minnesota has four clinics that specialize in care to children with sickle cell, it lacks any center for adults, leading to fragmented treatment as patients often visit several specialists.
"This data is really going to help us to paint the picture of the extensive needs of this community," said Rae Blaylark, founder and executive director of the Sickle Cell Foundation of Minnesota. The organization will work with the Health Department, which received the federal grant.
California has collected data on the illness and used it to support funding for a sickle cell center, Hauser said. "I think there is a desire here to have something like that."
Until now, only California and Georgia had received funding from the U.S. Centers for Disease Control and Prevention (CDC) to study sickle cell prevalence and care. The $1.2 million in grants announced last week will bring the total number of states with tracking programs to nine, including Indiana, Michigan and North Carolina.
Minnesota will receive $85,000 for a one-year project, which it hopes it can leverage into more substantial ongoing funding. "It is really meant to feed into future funding," said Hauser.
Nationwide, the CDC estimates that the disease occurs in one out of every 365 black births and in one out of every 16,300 Hispanic-American births, but in only one of every 100,000 births overall in the United States.
People with the disease have red blood cells that are shaped like a sickle rather than the typical round cell. This makes blood cells more prone to clog in the bloodstream, causing severe pain but also blocking the blood flow to organs, which can lead to organ damage or failure.
Most people with the disease inherit two sickle cell genes, one from each parent. People with one gene are said to have the sickle cell trait, which typically does not result in symptoms.
But many people don't know that they carry the trait, and until a few years ago, Minnesota was not proactive in notifying parents of children who were born with the trait. While 30 infants are born each year in Minnesota with sickle cell disease, another 1,000 are born with the trait.
"We realized in talking with other states in our region that we could do a better job of reporting sickle cell trait," said Joanne Bartkus, director of the state's Public Health Laboratory.
The Health Department launched a series of community meetings, which led to changes in reporting the trait to parents. But it also opened up a broader discussion about how the state could improve care.
"It is a wonderful community to work with, and we have developed some good relationships," said Bartkus.