In a time where it seems Republicans and Democrats can’t seem to agree on the color of the sky, a Quincy attorney managed to help craft legislation that received unanimous support in both chambers of the Illinois General Assembly and was signed into law by Gov. JB Pritzker.
Jeff and Jessi Terry have four children and their youngest, Jeffrey, was born in October 2020 withaport-wine stain.Port-wine stains take the name from the similarity in color to port wine. During developmentinutero, the gene responsible for creating blood vessels known as capillaries becomes stuck in the “ON” position. Former Soviet Union President Mikhail Gorbachev is the most famous example of such a condition.
Port-wine stains can occur all over the body, but when they occur on the head and face, they can cause significant medical complications. The Terry’s were told that, if left untreated, Jeffrey’s port-wine stain covering his left eyebrow and eye lid eventually could impact his vision. Having a port-wine stain on the head and face can also be a sign of a serious (yet rare) condition called Sturge-Weber Syndrome. In addition to the port-wine stain, those with the syndrome may have other symptoms which could include glaucoma, and neurological issues. These may include seizures and learning disabilities. If a baby is bom with port-wine stain extensive medical monitoring, testing, and potentially treatment is required. There is no cure for Sturge-WeberSyndrome, although Jeffrey has not been diagnosed with that condition.
The cosmetic concerns were secondary, but still important.
“We were concerned with the social-emotional effect that a port-wine stain would have on Jeffrey as he grew older,” Jeff Terry said.
The Terry’s insurer denied coverage stating the treatment was not medically necessary, did not cause a functional impairment, and was cosmetic in nature. They appealed that decision, but that was also denied. They then submitted an external appeal to the Illinois Department of Insurance, which overturned the denial in full and Jeffrey’s treatments were deemed medically necessary.
Terry, being an attorney, was able to get this done for his family, but he wanted to do more and took his case to his local representatives in the Illinois General Assembly, State Sen. Jil Tracy (R-Quincy) and State Rep. Randy Frese (R-Quincy).
Tracy and Frese worked within their respective chambers to facilitate the legislation. Terry testified before the General Assembly and, last month, SB 2158 passed through both the Illinois House and Senate unanimously.
Both legislators found Democratic colleagues across the aisle to shepherd along the process.
“The best ideas for legislation generally comes from constituents,” Tracy said. “That’s where we can find common ground.”