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

Kate Greenwood Portrait

Cross-Posted at Bill of Health

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 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 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.”


Discrimination on the Basis of Health Status in Health Insurance: “Market-Norm or Necessity”?

Kate Greenwood Portrait

Cross-Posted at Bill of Health

In recent months, advocates have alleged that discrimination on the basis of health status in health insurance continues, notwithstanding the Affordable Care Act’s attempts to level the playing field for people with chronic health conditions. How the government and industry should respond to the allegations is not clear, however, in part because what constitutes “discrimination” is not clear in this context. As Jessica Roberts has noted, there is an “intrinsic tension between an antidiscrimination framework and the practices of the private, for-profit health-insurance industry.” This tension makes it difficult to pinpoint where permissible cost-consciousness ends and impermissible discrimination begins.

As has been widely reported, at the end of May, the National Health Law Program, along with the Tampa-based organization The AIDS Institute, filed an administrative complaint with the United States Department of Health and Human Services’ Office of Civil Rights in which they allege that four qualified health plans offered through the federally-facilitated marketplace in Florida discriminate by “charg[ing] inordinately high co-payments and co-insurance for medications used in the treatment of HIV and AIDS.” The complainants go on to allege that because “[o]ther issuers vary tiering or place HIV drugs on more affordable tiers,” “the practice of placing all anti-retrovirals on the highest tier is not a market-norm or necessity.”

The complaint’s emphasis on whether the plans’ actions reflect a “market-norm or necessity” tracks the Centers for Medicare & Medicaid Services’ 2015 Letter to Issuers in the Federally-Facilitated Marketplaces, in which CMS writes that “to ensure nondiscrimination in [qualified health plan ("QHP")] benefit design, CMS will perform an outlier analysis on QHP cost sharing (e.g., co-payments and co-insurance) as part of the QHP certification application process.” CMS goes on to specify that, with regard to prescription drugs, a plan will be considered an “outlier” if it has “an unusually large number of drugs subject to prior authorization and/or step therapy requirements in a particular category and class.”

As Sarah Rosenbaum has noted, “CMS does not provide a review methodology or define what is ‘unusually large’.” Even if it had, what if subjecting a large number of drugs to prior authorization or step therapy requirements did not make a plan unusual? Would that mean that doing so was not “discrimination”? A study released in June that was funded by the trade organization PhRMA found, among other things, that:

in seven of 19 classes of medicines for serious illnesses, such as cancer, HIV/AIDS, autoimmune diseases such as rheumatoid arthritis and multiple sclerosis, and bipolar disorder, more than 20 percent of Silver plans require coinsurance of 40 percent or more for all drugs in those classes. Similarly, in 10 of the 19 selected classes, at least 20 percent of Silver plans require coinsurance of 30 percent or greater for drugs in the classes.

A letter sent in late July by the I Am (Still) Essential campaign to the Secretary of the United States Department of Health and Human Services, Sylvia Mathews Burwell, similarly raised concerns that cut across chronic health conditions and might even be considered “market-norms”:

Based on reports of enrollee experiences during the first year of Marketplace implementation, we have identified a number of concerns. These include discriminatory benefit designs that limit access, such as restrictive formularies and inadequate provider networks; high cost-sharing; and a lack of plan transparency that may deprive consumers of information that is essential to making informed enrollment choices.

It seems to me that the benefit designs that PhRMA and the I Am (Still) Essential campaign complain of could be discriminatory even if they were a market-norm. The Affordable Care Act’s prohibition on discrimination on the basis of health status would be much less meaningful if discrimination were defined to exclude actions taken by all or a substantial portion of the issuers in the market, or by a single issuer with regard to all or a substantial portion of chronic health conditions. This raises the question of how to determine if a plan is discriminating if not by reference to whether it is an outlier. In its 2015 Letter to Issuers, CMS suggests an answer, stating that, in addition to performing an outlier analysis, it will review plans for “[d]iscriminatory cost-sharing language,” which, it says, ” would typically involve reduction in the generosity of a benefit in some manner for subsets of individuals other than based on clinically indicated common medical management practices.”

In a policy brief on tiered pharmacy benefit designs released last month, Sally McCarty and David Cusano discuss the potential for such designs  to violate the Affordable Care Act’s anti-discrimination provisions. McCarty and Cusano write that “state insurance regulators do not always have the staff or other resources to detect discriminatory designs during the form review process[.]” They suggest that “advocates and other supportive groups may be able to offer assistance by promoting legislative efforts and developing new and creative resources to examine tiered formularies with specific groups or conditions in mind, much like the analysis conducted by the groups that filed the complaint against the Florida insurers.” To the extent that concerns about cost-sharing are market-wide, however, advocacy groups will likely also want to join together, in efforts like the I Am (Still) Essential campaign, to support state and federal legislative initiatives (McCarty and Cusano highlight a number of these at p. 4 of their brief) that would limit cost-sharing across issuers, across health conditions, and across plan designs.


Kathleen Boozang on Death with Dignity Legislation Currently Pending in New Jersey

dean-kathleen-boozang-176x220There’s a fair chance the New Jersey Assembly will take up the Death with Dignity Act before the legislators head off to the Jersey Shore for the summer.  The topic is appropriate for this blog, entitled Health Reform Watch, because physician-assisted suicide (PAS) is a kind of desperate attempt at reforming end-of-life care.  The frustration with the limited extent to which we’ve been able to improve end-of-life care over the last three decades is understandable.  I suggest, however, that even with the enactment of practitioner orders for life sustaining treatment (POLST) legislation, New Jersey has not been sufficiently creative or aggressive in attempting to change end-of-life care practices in the state, and the legislature should be focused on other initiatives to achieve that end.  Based on the experiences of Oregon, Washington, and Vermont, there is no reason to expect that a Death with Dignity law would contribute meaningfully to an improvement in end-of-life care for New Jerseyans.

First, let’s get one matter out of the way:  I do not believe that the proponents of Death with Dignity legislation are motivated by a desire to reduce the cost of end-of-life care.  The patient suicide movement has been around for a very long time, and has always, in my view, been grounded in the philosophical belief in patient autonomy and an expansive view of a right to control the means and timing of one’s death.  Experience in those states where PAS is legal is that too few people take advantage of physician-assisted suicide for its availability to make a dent in health care costs.  If anything, reducing healthcare costs is more likely to be a reason supporting improvements to end-of-life care, although nationally, it’s not clear one way or the other whether reforming end-of-life care will actually reduce Medicare costs – the labor-intensive care required for several months of hospice is expensive.  New Jersey could be different.  Certain indicators suggest that patients dying in New Jersey receive more aggressive treatment than almost any other state in the country. Because that’s not how the majority of people want to die, it could be that in New Jersey, improving care of the terminally ill would save Medicare dollars.  If that’s a side benefit, all the better.  My primary point in this regard is that I don’t think it’s fair to accuse proponents of PAS of being motivated by potential cost savings; proponents of reforming the care of the chronically and terminally ill are more likely to cite costs as a factor in their search for reform.  Ultimately, I believe that both sides are motivated primarily by the desire to provide patients and their families with compassionate, holistic, and high-quality care in the last years and months of life.  That will not be accomplished by physician-assisted suicide. Read more


The Demographics of Illness and Cost: or, An Old Story About Chronic Conditions

Italian physician and doctor Girolamo Mercuriali, portrayed by Lavinia Fontana (1552- 1614)

Italian physician and doctor Girolamo Mercuriali, portrayed by Lavinia Fontana (1552- 1614)

We’ve reported on the distribution of health care costs among populations on numerous occasions here at Health Reform Watch. Over the last decades, our own Professor John V. Jacobi has been espousing reform, at times as almost a voice in the wilderness, as a matter of dealing in caring and cost conscious ways with chronic conditions.

In January of 2009 I noted, quoting HHS reports:

Twenty-five percent of the U.S. community population were reported to have one or more of five major chronic conditions:

  • Mood disorders
  • Diabetes
  • Heart disease
  • Asthma
  • Hypertension

Spending to treat these five conditions alone amounted to $62.3 billion in 1996. Moreover, people with chronic conditions tend to have other conditions and illnesses. , according to 1996 MEPS data. On an individual level, treatment for the average patient with asthma was $663 per year in 1996, but when the full cost of care for asthma and other coexistent illnesses is taken into account, the average cost was $2,779.

When the other illnesses are added in, total expenses for people with these five major chronic conditions rise to $270 billion, or 49 percent of total health care costs.

Expenses for people with one chronic condition were twice as great as for those without any chronic conditions. Spending for those with five or more chronic conditions was about 14 times greater than spending for those without any chronic conditions. Persons with five or more conditions also have high hospital expenditures. In New York State during 2002, of the 1.3 million different persons admitted to the hospital, the 27 percent with five or more chronic conditions accounted for 47 percent of all inpatient costs.

I have also noted in July of 2009 that

…32% of Medicare costs are attributable to diabetes. It is no stretch to say that if we have a Medicare cost problem in this country (we do), what we really have is a diabetes problem (and, considering Halvorsen’s “we only get it right 8% of the time” figure, a diabetes treatment problem as well).

But first things first. 32% is a mere scooch (yes, that’s the technical term) away from ONE THIRD. That’s an enormous number. If one were to relate this portion of Medicare expense to houesehold expenditures, it occupies a place similar to a mortgage– but an expensive mortgage in a house that no one wants to live in.

And now a further health cost demographic from NPR’s Marketplace in conjunction with WHYY’s Health Desk, Gregory Warner. And yes, it’s about chronic conditions:

Tess Vigeland: Take everything this country spends on health care — the government, employers, patients — and it rounds out to a little over $8,000 per person on average.

But averages don’t really tell the whole story. A study by the National Institute for Healthcare Management found that in 2009, 15 percent of us had no health care costs at all. While at the other end, 5 percent accounted for almost half of all health care costs: $1.2 trillion.


Gregory Warner: Maybe you picture this high-cost patient as someone at the end of life, confined to a hospital bed and hooked up to expensive medical devices. But more likely, you’ll find this person at home or in a nursing home, living with five or more chronic conditions.


Medicaid Incentives for Healthy Behavior: Turning That Cigarette Back Into Cold Hard Cash

V. Van Gogh (1853-1890)

V. Van Gogh (1853-1890)

The Centers for Medicare and Medicaid Services (CMS) recently announced a $100 million program through which states can reward Medicaid enrollees who adopt healthy behaviors. The grant program is part of the Patient Protection and Affordable Care Act and allows states to offer incentives for tobacco cessation, controlling or reducing weight, lowering cholesterol or blood pressure, and avoiding the onset of diabetes or improving management of the condition. The goal of the program is prevention, as spending on chronic conditions is said to account for more than 75 percent of annual healthcare expenditures in the U.S.

According to CMS Administrator Dr. Donald Berwick,

With the right incentives, we believe that people can change their behaviors and stop smoking or lose weight. Not only can preventive programs help to improve individuals’ health, by keeping people healthy we can also lower the nation’s overall health care costs.

States are not limited to direct cash incentives– proposed plans could include waiving premiums, deductibles and coinsurance payments, or offering coupons or gift certificates for weight management classes or tobacco cessation counseling.

CMS has based the program on data suggesting a short-term change in behavior when people are offered monetary incentives. Current research shows that while people may be internally motivated to make healthier decisions because of future consequences, they don’t often weigh those delayed outcomes with the immediate reward of engaging in the behavior. For example, knowing that smoking increases lung cancer risk 20 years from now isn’t always going to stop someone from smoking a cigarette. The benefit of monetary incentives is therefore their immediacy– they replace one unhealthy reward with another less harmful one. In short, CMS is betting that someone would put down that cigarette right now if you just paid them to.

But the experience of making healthy decisions seems to align more with what Mark Twain opined in Following the Equator,

He had had much experience of physicians, and said “the only way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d druther not.

Though an individual may make a healthy choice now because they would prefer a cash incentive, that doesn’t automatically change their instinctual behavior. Someone could theoretically be convinced to take a grocery store gift card instead of buying a fast food dinner, but that does not change how much they enjoy the taste of a cheeseburger. In many circumstances, people engage in certain behaviors simply because they like to. For this very reason, critics are quick to point out that monetary incentives are unlikely to spur long-term changes in unhealthy habits. Critics also note that there is little research on whether these incentives will be successful in the Medicaid beneficiary population.

What may redeem the initiative from these criticisms is that CMS is candidly calling it a  ”demonstration program,” designed to figure out which strategies produce long-term behavioral changes. By allowing states to develop their own programs and keep data on the experience, CMS seems to be hedging its bets, wagering that at least one program will provide a successful model. Further, CMS can use the data to evaluate other factors such as the administrative costs incurred by states in rendering the programs.

Could $100 million federal grant dollars be used to support preventative health in a different way? Of course. But as long as this money is being set aside to incentivize healthy behavior, we may get an answer to whether external motivators spur long term behavior change. I, for one, would love to know just how much money it costs to convince someone to stop smoking, or to consistently trade in that Big Mac for some broccoli. It almost has to be cheaper than what we’re doing right now.


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