Good morning. Thank you, Justice Wallace and Commissioners for your time and your hard work during this important process. My name is Tracy Keegan, and I have been a resident of CD-7 for most of my life—nearly 43 years—having been born and raised in New Providence and now raising my own family in Summit. I am an avid community volunteer, especially with our senior citizens.
There are many reasons why I feel passionately that CD-7 should stay intact, with a fair map and not one gerrymandered to favor any particular party, but today I come to you as a mother who has been advocating for the past 19 years on behalf of one of my children, a college student who was born with Phenylketonuria (or PKU), an inborn error of metabolism diagnosed at birth. In order to avoid devastating neurological and physical damage, PKU patients must maintain a strict, lifelong medical diet and consume a special medical formula multiple times per day. It’s because of this that for our family, continuity of Congressional representation is critical. I’ll explain why.
As you can probably imagine, insurance coverage is absolutely crucial when dealing with a serious, lifelong issue like PKU. PKU families who are lucky enough to have health insurance are constantly wrangling for coverage with insurance companies. And it’s no surprise that these companies give us such a hard time, as the costs are exorbitant. My daughter’s formula costs $8,000 per month.
When you first have a child with a disorder like PKU, the importance of your Congressional representation is not the first (or even the 100th) thing that comes to your mind, but as we have found out over the years, who represents us is extremely important. As my daughter got older, I worried about her future ability to obtain her own health insurance, and that worry was only exacerbated by our former Congressman Lance, who showed no interest in fighting on behalf of the many constituents who asked him to act to ensure that health care is treated as a right, not a privilege. Given the devastating effects this inaction would have on my daughter’s future when it comes to her ability to afford to stay healthy, I joined with thousands of others in our district to flip the seat in favor of a representative who listens and acts on behalf of their constituents, not their party.
After we flipped the seat, I attended a constituent roundtable with our new representative, Congressman Malinowski. I told him how insurance companies are not compelled to cover her life saving formula and foods, and how I have had to fight to renew coverage for it every six months of her life—continually having to prove that she does, indeed, have the genetic condition she was born with. I shared with him how I worried what would happen to her as she enters adulthood and has to rely on the luck of the draw when it comes to her own health insurance. Given I had been working with other PKU families for years to implore Congress to pass the Medical Nutrition Equity Act (MNEA) which would mandate across-the-board insurance coverage for medical foods and formula, I asked our new Congressman if he would help us fight for it. I was hopeful, but realistic about the outcome of my request, given our years-long odyssey to get someone to care. Less than two weeks later, I received an email from his office letting me know that he was becoming a co-sponsor of the MNEA and would work with us to ensure that our child, and others like her, would have a secure future when it comes to their health care. The bill is still in the House and Congressman Malinowski continues to advocate for us.
This is why for our family, continuity of representation is critical—it could literally have life-altering consequences for us. My family implores you to ensure that CD-7 remains intact and fair and that our fight to ensure our daughter has the ability to live a healthy life as she embarks out on her own is assured of a good outcome.