Lessons from Miss Idaho: Greater Acceptance of (but Not Necessarily Greater Access to) Diabetes Devices

By Kate Greenwood
[Cross-posted at Health Reform Watch]

Given the health law and policy topics that are this blog’s usual fare, some of you may have missed the fact that earlier this month the eighty-eighth annual Miss America pageant was held here in New Jersey, at Boardwalk Hall in Atlantic City. And you may have also missed it (I did) when, this past July, Miss Idaho, Sierra Sandison, a Type 1 diabetic, became a social and traditional media sensation after she competed in the swimsuit competition with her insulin pump clipped to her bikini bottom, visible for all to see. Sandison started a hashtag, #showmeyourpump, inspiring Type 1 diabetics from around the world to post photos of themselves with their pumps.

Although Sandison was the first contestant to compete in the Miss America pageant with her pump visible, she is not the first contestant with Type 1 diabetes, or the first to rely on a pump. In 1998, both Deana Herrerra, Miss New York, and Nicole Johnson, Miss Virginia, had the disease, and both relied on pumps to control it. Johnson went on to be crowned Miss America 1999, with a platform of diabetes awareness. Johnson explained to the Philadelphia Inquirer that, before getting the pump, “‘I stuck myself four or five times a day. I was getting scar tissue. I was feeling depressed, and I thought, `I’m never going to have an iota of freedom.'” Since getting the pump, Johnson said, “‘Now, I control the diabetes.”’

Sierra Sandison’s decision to wear her diabetes pump on her hip both contributed to and was the result of a trend toward greater acceptance of medical devices and our need for them. (As Miriam Tucker reported at NPR, “Amputees are increasingly using visible prostheses rather than covering them up. And the ostomy community has its own version of the ‘show me’ campaign.”) Nicole Johnson told Tucker that “‘Our culture seems to be more accepting today, as opposed to when I was diagnosed in 1993.'”

Perhaps unsurprisingly, the increase in acceptance has not translated into easy or uniform access to the medical devices that help diabetics manage their disease, including insulin pumps, insulin pens, and continuous glucose monitors. In its 1998 article about Johnson, the Philadelphia Inquirer reported that while “most health insurers” covered pumps, coverage for the accompanying supplies was less uniform. As a result, “Johnson and other advocates [were] calling for standard, universal [health insurance] coverage of pumps and all diabetic equipment.” Coverage of diabetes equipment and supplies is still an issue today. The American Diabetes Association indicates on its website that ensuring that private and public health insurance “provide access to the services, tools and education necessary to meet the needs of people with diabetes and prediabetes” is one of its top advocacy priorities.  The device company Medtronic writes on its website that, as was the case in 1998, most private insurance companies cover pumps, subject to any applicable deductible or co-insurance (which could be a substantial barrier, given that pumps can cost in excess of $6,000), but coverage by public insurance and, in particular, by Medicaid, is more variable.

Here, I circle back to New Jersey. A report issued earlier this year by the Center for Health Law & Policy Innovation at Harvard Law School indicates that New Jersey Medicaid “cover[s] diabetes equipment and supplies, as well as prescription drugs including metformin and insulin.” There are concerns about the quality of the coverage, though. The report indicates that New Jersey’s Medicaid managed care organizations (MCOs) “tend to frequently switch which brands of glucose meters and test strips they cover, as well as which brands of insulin they include on their drug formularies,” which causes patients to become confused. The providers that the Center for Health Law & Policy Innovation interviewed “described patients coming to primary care appointments with grocery bags filled with glucose monitors and test strips, completely unsure which strips go with which monitor and functionally left without any testing supplies as a result.” The report also flags as an issue monthly limits on test strips that are not grounded in medical necessity.

And that’s not all. Earlier this year, at the Center for Health Law & Policy Innovation’s blog, Alexandra Maron wrote the following:

As an attendee at the New Jersey Diabetes Leadership Forum, I had the pleasure of witnessing a real, live insulin demonstration. Fran Grabowski, Lead Diabetes Educator for the Camden Citywide Diabetes Collaborative and Program Manager at Cooper Diabetes Center, went around from table to table at the Forum throughout the day showing attendees the various tools available for those with diabetes to take their insulin. . . . Ms. Grabowski first demonstrated how to use a syringe to give insulin, and while she noted that the needle is much smaller than it was in the past, it is still uncomfortable for those with diabetes who have to give themselves insulin at least 4 times per day. Ms. Grabowski then showed attendees the insulin pen, which has a remarkably smaller needle than a syringe, but unfortunately is no longer covered under New Jersey Medicaid. She pointed out that this is very unfortunate for those with diabetes in New Jersey because they are forced to use methods that are more time consuming and more painful. She also described the mechanism of insulin delivery systems, such as pumps and patches, which are even easier ways for those with diabetes to receive insulin; however, Medicaid also does not cover those systems.

My initial response to reading Maron’s post was a visceral one. It feels wrong that our wealthy state forces individuals with diabetes who receive Medicaid to take care of themselves using methods that are painful, time consuming, and, for many, less effective. Beyond my gut feeling, it may also be penny-wise but pound-foolish. As the Center for Health Law & Policy Innovation concludes in its report:

“The limits on access to diabetes supplies and services mean that fewer patients are using these services. This is probably causing a number of unnecessary deaths and significant morbidity in the state, given that sustained reductions in A1C [a measure of average blood glucose level over the previous three months] are associated with a 21% lower risk of death. It is also probably costing New Jersey millions of dollars.”

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