As our series of interviews with our 2017 DiabetesMine Patient Voices Contest winners continues, we're delighted to introduce Christy Ford Allen, a D-Mom in Charleston, SC, who has quite the experience as an advocate.
Christy's now-school-age daughter Eva was diagnosed a decade ago, and today she shares the parenting struggles of navigating T1D in a child so young, and talks about her work as an attorney fighting for those with diabetes on legal issues. It's that focus she hopes to expand on, and bring more innovative thinking to the D-Community.
An Interview with D-Mom Christy Ford Allen
DM) First up, can you share your family’s diagnosis story with us?
My daughter Eva was diagnosed 10 years ago, at the age of 2.
Navigating onset with a child unable to communicate her feelings and the reasons for why her life was different was probably the biggest challenge. It also has a significant impact (sometimes good and sometimes bad) on a marriage and life direction.
Now that she is 12, the ease with which Eva is able to communicate really illustrates how much more difficult such a young diagnosis was.
What was like in those early years when Eva was just a toddler?
When a child is so young they are not able to ask questions like, “Why am I different?” or tell you, “I am depressed because I don’t want this forever” and “I don’t understand why I cannot have that cotton candy.” As the parent, you’re always trying to figure out what they are thinking or feeling.
I did not realize how heavy that burden was -- the trying to figure out what they are thinking and feeling -- until my child was able to really communicate her feelings probably around the age of 7-8. We should recognize that parents of very young children under 7 take on an additional burden of trying to perceive what their children cannot communicate yet.
What kind of effects does that have on family relationships?
There is cultural expectation of stoicism for parents (moms in particular) with children who have chronic diseases, and a constant pressure to be and appear optimistic. A reality is often that a lot of emotional energy and focus is directed to your child, and that energy can therefore be unavailable for others and unavailable for yourself.
Making decisions and changes, in life direction, career, and so on takes a lot of energy. When one’s energy is constantly focused elsewhere, your own needs and the needs of others can get ignored. Years go by quickly. Be careful and make room for yourself and your relationships. Struggle is real, and being vulnerable with others about your struggle gives back in amazing ways because most people are just looking for a way to connect.
The podcast “Terrible, Thanks for Asking” speaks to this, and has been keeping my attention while trying to get back to the gym.
We understand your work in the legal profession came in handy with diabetes...?
Yes, I am an attorney with a focus on commercial and real estate litigation, and I litigated a diabetes insurance case to the SC Supreme Court; I was successful in requiring the State of South Carolina’s State Employee Insurance Plan to add “diabetes education” to their covered services.
Whoa, can you share more about that diabetes education case?
Despite a SC mandate statute in place since 2000, the State Plan had taken the position that it was not “insurance,” and therefore the statute did not apply to it.
We brought a case against the state (as administered by BCBS) appealing the denial of a $500 charge for a pump education session for my daughter who was 3 years old at the time, and spent years litigating whether the State had to comply with the mandate. In 2015, the SC Supreme Court published an opinion, which agreed that the State health plan was required to comply with the mandate statute, and that State Plan added that coverage. That full opinion can be found here on Justia.
And the case had public health implications?
Specifically, the state’s Supreme Court commented in its opinion, “South Carolina is cursed by diabetes. According to the South Carolina Department of Health and Environmental Control’s most recently published statistics, South Carolina ranks seventh highest in the nation for the percentage of its adult population with diabetes… With these statistics in mind, we find that the General Assembly sought to alleviate and prevent diabetes’s potentially devastating effect on those South Carolinians suffering from the disease by mandating coverage for the equipment, supplies, medication, and education for the treatment of diabetes. Thus, given the prevalence of diabetes in South Carolina, coupled with the General Assembly’s purpose behind enacting section 38-72-46, we find it inconceivable that the General Assembly intended to exclude South Carolinians insured by the State Health Plan from receiving the benefits of section 38-71-46’s mandate.”
Wow, that’s pretty incredible. Great work there!
For me, as a lawyer with a child with diabetes, it was not hard for me to litigate for over 5 years to make the state do what is required by law to do. That is what I know how to do, and one thing I could do to help. But for others without access to the legal system like that, it would have been impossible.
What kind of diabetes activities and advocacy efforts have you been a part of?
I am involved on a Patient Family Advisory Council for the Medical University of South Carolina, with the largest pediatric endo center in the state. Interestingly, while the PFAC is intended to represent all clinic-based areas, the parents of the peds endo kids are the main participants.
Aside from that, I participate in JDRF Advocacy efforts by contacting legislators and doing those types of activities, as well as doing legal work on diabetes insurance issues as I’d mentioned.
What are the biggest changes you've seen in diabetes care since your daughter’s diagnosis?
The time to market for technologies. 'The perfect should not be the enemy of the good' in the development of new technologies. That really is the basis of the biggest challenges we face in diabetes: Time to market. Pressures against market-based competition. And insurance complexity/coverage.
Pending a full reformation of our American healthcare system, what do you think can be done to help PWDs with insurance coverage struggles?
I am interested in exactly that -- finding a way to help patients and parents maximize and better negotiate their private insurance benefits.
JDRF, for example, recently has taken up a national advocacy campaign about insurance coverage. This is great on a national level. But there is not a local (hospital-based or state-focused) advocacy platform to make sure the insurance companies are complying with the various state diabetes coverage mandates. There is no person who educates and informs providers about how to help their patients get the most out of their coverage -- on issues such as transparency and notice of insulin brand changes, how to write scripts for supplies which match the quantity parameters for supply coverage.
For example, day supplies of insulin (units per day) do not often match up to the quantity of insulin per vial, so the carrier provides one fewer vials than a 30 or 90 day supply, and then the patient has to return to pharmacy in less than 30 days and pay more co-pays. There's a similar issue with pen needle quantities and how they are prescribed, and lack of transparency about conditions or requirements for certain brands or certain supplies which are not automatically covered.
I am putting together a survey for local providers and nurses to get feedback about types of issues they encounter, would like information about, and whether they would use such an advocate. I hope to be able to present some findings from that in November.
What are you most looking forward to about the Innovation Summit?
I am looking forward to learning from others about how to get an advocacy effort off the ground.
Thanks for sharing your story, Christy. We can't wait to see you in November!