Lab Matters Summer 2018 - Page 12

feature of reproductive age, so they could “put themselves in the shoes of a new parent.” “All I could ask for is a good faith effort” A Maggie Dreon, MS, CGC, a genetic counselor at the Minnesota Public Health Laboratory, said, “I think when people think about NBS, they think it is not relevant to health equity; we test all babies for all [state NBS] disorders. I think the reason it is actually the opposite is because there are certain populations that are more likely to be impacted by some disorders, and how we respond to those specific communities needs to be specific to ensure they get the optimal experience from the process.” The Minnesota laboratory has been screening for sickle cell disease since 1988, identifying infants with the blood disorder, those without the blood disorder and those with a condition known as sickle cell trait, characterized by the presence of both normal and abnormal hemoglobin. Individuals with sickle cell trait will never develop symptoms of sickle cell disease. But, as “carriers,” they face a one-in-four chance of passing the disease to their biological offspring, if they have a child with another carrier. Children with sickle cell disease, said Dreon, “will have to be followed by a hematologist, will need to start certain meds in their infancy to reduce the risk for sepsis. They will experience anemia, will develop pain crises and can have strokes. It is a systemic disease and requires lifelong, extensive care.” While only about 25 Minnesota babies are diagnosed with sickle cell disease each year, roughly 1,100 are identified as carriers (out of approximately 67,000 babies born in Minnesota annually). In 2015, the public health laboratory began examining how sickle cell trait findings were communicated to affected families— who are mostly African-American or West African. Based on a survey of pediatricians 10 Dreon said community members wanted to know if their children were carriers and “the pervasive community opinion” was that no single method of sharing positive sickle cell trait findings would work for everyone. nother success story comes from Minnesota and relates to a test area not usually associated with health equity: newborn screening (NBS). LAB MATTERS Summer 2018 The Minnesota laboratory has been screening for sickle cell disease since 1988 “When people think about NBS, they think it is not relevant to health equity; we test all babies for all [state NBS] disorders. I think the reason it is actually the opposite is because there are certain populations that are more likely to be impacted by some disorders, and how we respond to those communities needs to be specific to ensure they get the optimal experience from the process.” Maggie Dreon, MS, CGC, genetic counselor, Minnesota Public Health Laboratory and other newborn providers, the laboratory determined that, in 74% of cases, the information wasn’t shared at all. This gap, said Dreon, represented a missed opportunity: “This could be the first time the parents find out [at least one of them has sickle cell trait].” She said, “Our goal isn’t to tell two people, both with [sickle cell] trait, not to have children, but rather to make sure families are informed about their reproductive risks.” The Minnesota Department of Health then conducted a series of key informant interviews with community leaders and hosted five focus groups in the Twin Cities and a suburban West African enclave. Focus group participants had to be parents, had to be African- American or West African, and had to be As one focus group participant said, “Some will prefer phone calls, some will prefer letters, some will prefer an in-person [meeting]. Is there a way to do all three? Is there a way to do at least two out of three? I think that all I could ask for is a good faith effort.” Thus, today the laboratory uses a multi- prong approach, with notification to infants’ physician of record or the clinics likely to follow the infants and, for the first time ever, directly to parents via US mail. In addition—because parents wanted access to a sickle cell expert—the public health laboratory created a position for someone certified in sickle cell counseling. After the new process was established, a follow-up physician survey found that doctors now discuss positive sickle cell trait findings with families 59% percent of the time, up from 26% previously. And post-intervention focus groups confirmed that families “felt more empowered because they had this information,” Dreon said. Finally, the Minnesota Department of Health began a working group to address challenges faced by the sickle cell community. For example, said Dreon, “Kids with sickle cell disease have pain crises, and they present to the ER with excruciating pain, and the treatment is opioids. And it’s going to be a high dose. It’s very likely a black individual [seeking pain relief] who is labeled a drug-seeker and met with a lot of resistance. There’s published literature showing they’re likely to encounter treatment delays.” Anytime you engage the community, Dreon said, “it’s a bit of a Pandora’s Box, but that’s the point.” Or, in other words, to uncover health inequities, you first have to look for them. n PublicHealthLabs @APHL APHL.org