By Jan Worth-Nelson
A federally-funded registry to monitor the health of individuals affected by the Flint water crisis is about to launch, Flint pediatrician and crisis luminary Dr. Mona Hanna-Attisha told the FACT Community Partners group meeting Thursday under the dome at City Hall.
Funding for the program, about $14.4 million awarded to Michigan State University, has been earmarked from a $150 million December, 2016 bill passed by Congress to address Flint’s pipe replacements and health recovery, Hanna-Attisha explained.
The voluntary data collection plan, called the Flint Lead Exposure Registry, is designed to “monitor the health of our community and to advocate for resources needed to support our health,” she said. “It will be a way to empower the residents of Flint to get the data they need about the impact of the water crisis on their health.”
Nicole Jones, a lifelong resident of Genesee County and director of the program, said details are still under construction, but added for sure those interested in joining the registry will be asked to fill out at least two surveys about how they’re doing on a range of criteria. Respondents then will be connected to services in the community that may benefit them. Jones and Hanna-Attisha both stressed the data base will be “a support registry — not a research registry.” Jones also is an assistant professor of pediatric public health initiatives at Michigan State.
The long-term goal of the registry is to have data available to “intervene and be pro-active” as the consequences of the water crisis play out, Hanna-Attisha said. Jones and Hanna-Attisha said the registry group “still are designing what people want us to follow” — everything from resilience to stress to cancer to miscarriages.
Hanna-Attisha said her “elevator speech” for residents considering participating in the program is “Get connected, get supported, get counted. Get your voice heard. Share your story.”
Addressing emerging resident concerns about the privacy of the data, Hanna-Attisha stressed the registration is “secure, under the highest regulations of data privacy.” She said the registry coordinating group is being advised by a team of public health lawyers, and that “You will own your info and you get to say who you share it with.” She said the data “all is in control of the people who participate in the registry.”
Hanna-Attisha said registry team members have met with many experts, including environmental justice experts, lead experts, health experts, economic experts and others. She said the group traveled to New York to meet with representatives of the World Trade Center registry, which is in its 17th year following the Sept. 11, 2001 tragedy.
“What we heard from them was that people didn’t have a lot of trust at first,” Hanna-Attisha said. “The EPA told people they could go back to work, that the air was okay,” and later that proved not to be true, she said.
Formal enrollment for the Flint Lead Exposure Registry opens in Fall, 2018, although pre-enrollment soon will be available at FlintRegistry.org. Anyone exposed to the Flint Water Crisis “from April 25, 2014 to a date yet to be determined can join, including individuals who went to school in Flint, went to daycare in Flint, or worked in Flint,” according to a FAQ handout presented by Hanna-Attisha and Jones.
Summarizing the many initiatives unfolding in Flint because of the water crisis, Hanna-Attisha was upbeat. She noted when Flint’s infrastructure program is completed — a goal set for 2020 — it will be only the third city in the nation to have had its lead pipes replaced, along with Lansing and Madison, Wisconsin.
“Flint will be the best city in the country in how we recover,” she said. “What we see in Flint is a community that has rolled up its sleeves and worked together. It’s actually awesome.”
EVM Editor Jan Worth-Nelson can be reached at firstname.lastname@example.org.