On June 27, 2016, Nicole Nichols sent an email.
Addressed to Mississippi House of Representatives Republican Jeffrey S. Guice (District 114), the letter, written by the mother of a daughter with Type 1 diabetes and advocate for The Diabetes Foundation of Mississippi, asked for his help.
“We have recently begun having a lot of problems with Medicaid/CHIPS coverage of the essential diabetes coverage of the essential diabetes supplies needed, not only to keep our kids healthy, but to literally keep them alive,” she wrote. “Many parents, myself included, have found that while supplies are deemed necessary and technically covered by insurance, we cannot get Medicaid and/or CHIPS to pay for them, and suppliers aren’t able to help us.”
After further explaining the situation and detailing her personal efforts to rectify it to no avail, she asked Guice a simple question: “Is there someone in the legislature that can and will help these children stay healthy?”
In a now-infamous response, Guice wrote back, “I am sorry for your problem. Have you thought about buying the supplies with money that you earn?”(A Plus reached out to Representative Guice for comment, but did not receive a response by the time of publication. Previously, he told The Clarion-Ledger, “I don’t do interviews.”)
In her reply email, Nichols explained that “quite often” she and her husband had thought about buying the diabetes supplies with their money, however, if they tried “the sum would leave [their] family of four homeless.” Then, she listed the out-of-pocket cost equivalents for each medical supply her daughter Bella needs, amounting to a minimum of $2,605 per month.
“Do you earn enough money to pay for these items every month?” Nichols asked. “While you may, my husband and I, unfortunately, do not.” After explaining that Nichols and her husband were both “working individuals, with college degrees” who had already made material sacrifices to provide for their children, she concluded, “…and without Medicaid to cover the LIFE SUSTAINING medications and supplies that my child needs, we would be homeless.” Nichols explained to A Plus that because her family would only qualify for Meidcaid or CHIP if their household income was less than $38,000 or $55,000 a year, respectively, she is a stay-at-home mom and volunteer while her husband works two jobs.
“Due to the cost of childcare, frequent absences due to doctors appointments, visits to school for diabetes related issues, general sick kids, and the additional cost of insurance premiums and copays (for private insurance), we would be worse off financially if I worked,” she added. “Due to the private insurance option we have, the monthly premiums for Bella’s diabetes care would be about $800-$1000 a month (a mortgage payment!) CHIP (our current coverage) allows us to continue being productive members of society, and keep our home instead of living with family, until my son is school age and childcare prices drop dramatically.”
Once Nichols’ son starts school, she hopes to work in the health advocacy field.
After Nichols posted the email exchange to her Facebook page, “Living With Test Strips,” it incited a social media frenzy.
Not only was the post shared more than 24,000 times, but dozens of media outlets covered the story, as well as a follow-up meeting between Nichols and Guice. At Speaker of the House Phillip Gunn’s office, she received a “formal and informal” apology from the politician, according to USA Today.
“I guess you could say Representative Guice poked a bear?” she told A Plus via email. “I was miraculously able to restrain my temper during the media frenzy last year, and I gained the respect of several other advocates in the diabetes community.” Through this experience, she began to write for a few diabetes websites, giving Nichols a place to both share her frustrations and educate others about certain health care issues.
It also ignited something inside Nichols that would irrevocably change the way she viewed the American health care system and her family’s place in it.
While Nichols and other parents in the Mississippi diabetes community were able to sort out the “contractual issues with MS Medicaid… to some degree” by switching to a different insurance provider within the Medicaid system, she knew this was just one battle in a much larger war. On a larger scale, however, she has seen “no improvement” with general health care in Mississippi.
“…The experience gave me more confidence in speaking out and also made me dig further into the political world than I ever had before,” she said. “While I was already advocating on a local scale for families in the diabetes community, the support inspired me to be more vocal, and as is my natural tendency, I jump into an issue entirely when I’m interested and learn as much as I can.”
After the 2016 election, she “really dove into the political world.” The deeper Nichols dove, the more frustrated she became with the way “Congress started playing with health care” and the “major problems” she and others in the diabetes community believed their recent legislation would incur.
“I look to non-partisan organizations like the Kaiser Family Foundation for most of my information, and I see nothing positive in the AHCA/BCRA for the average American family,” she explained. “The cuts to Medicaid alone will lead to massive cuts in services, a decline in health outcomes, and have negative economic impacts on hospitals, not to mention those employed in the health care field… Many people have no idea these cuts will be so far reaching.”
And as Nichols’ has seen time and again, just as many people aren’t getting any answers. “My senators don’t hold town halls or answer questions — so I found myself desperate to drive to DC many times,” she said. “It’s just not feasible for our family or as a [stay-at-home mom] with two kids. So I took my fight to the State Capitol instead.”
Now, just over a year after that original email exchange, Nichols has taken her fight to the streets of Mississippi.
This past Saturday, July 8, 2017, she organized and lead a health care protest in “response to the current political climate” and her “frustration and concerns related to the Senate’s proposed health care legislation.”
And though Bella “now has CHIP [Children’s Health Insurance Program] instead of Medicaid and will likely be on private insurance within the next year,” everything she’s learned in the last one has shown her just how important it is to continue “fighting for those that will need them [Medicaid services] for years to come.”
Though this wasn’t Nichols’ first protest (that had happened nine days earlier), it was the first she’d ever lead in a self-described “fly by the seat of your pants” fashion. Having never done anything like this before, Nichols pulled it all off with some behind-the-scenes help from “several more experienced individuals” and support from various local organizations.
“I’m a relative nobody and everyone was encouraging and grateful for the chance to get out there and give our senators a piece of their minds,” she said. “…I loved organizing the event, and I felt like I was finally doing useful versus just fussing on social media.”
Though the process was “exhausting, a little frustrating, but inspiring” all at the same time, and Nichols was “a bundle of nerves” by the end of it, this protest was just the first step on what may be a long march toward health care reform.
Already, she plans to speak at another protest later this month. Nichols is also toying with the idea of a small discussion group for her community member to address local issues and spur activism on a larger scale as well. Though it’s still in the “very early stages,” she hopes to move forward with the support of friends and, of course, the family that has made this — and everything — worth it.
By A Plus’ Lindsay Geller
