The creation of health insurance Exchanges – marketplaces where consumers will be able to shop for and buy health insurance – is a cornerstone of the health reform law.  But when the members of the Health Insurance Exchange Board were announced, consumer advocates expressed dismay for two reasons: first, no consumer advocates were appointed, so slots that, by law, were supposed to go, for example, to someone with experience in dealing with barriers to individual coverage, instead went to people who have no such experience; and second, some of the appointees to the Board have very strong ties to the insurance industry, which certainly has a strong self-interest in many of the decisions the Exchange Board is going to have to make. 

The Exchange Board members have responded by saying that all of them are consumer advocates.  This completely misunderstands the point.  We who represent consumers who struggle to obtain and maintain access to health care have a different and valuable perspective on what obstacles patients face.  In my case, not only do I have several serious, disabling chronic illnesses, but I also have represented thousands of people with chronic illness who are uninsured, or who have insurance that does not cover what they need, or who have insurance with high deductibles and copays that make actual access to treatment entirely unaffordable.  Based on what I live and what I’ve learned, I have a perspective that many – from federal government agencies to nationwide insurance carriers – find to be revealing. 

Against this background, it should come as no surprise that Connecticut’s systematic exclusion of strong consumer voices in the process of setting up the Connecticut Health Insurance Exchange would have dire consequences.  We can begin to see that in the final report issued by the Exchange Board’s consultant, Mercer.  Mercer’s report draws on information gathered from insurance carriers and companies like Ingenix and the Lewin Group that are wholly owned subsidiaries of UnitedHealthcare; no consumer advocates were consulted.  As a result, Mercer’s report is fatally one-sided.

For example, Mercer advocates for innovations that would ease the costs to insurers by shifting costs to consumers, making treatment so expensive that it is inaccessible to most of us.  This is best illustrated by Mercer’s advocacy for specialty tiers as part of pharmaceutical coverage plans.  Most of us have insurance that requires a set dollar amount copay for a prescription; we pay a little more for brand names than we do for generics, and a little more for drugs not on our plan’s formulary.  Specialty tiers, which already are in use in 25% of plans nationwide, require patients to pay a percentage of the cost of their medication.  We know of one woman who, under her plan with specialty tiers, would have to come up with $3000 per month to pay for her medication – far more than most of us can afford.  Yet, Mercer thinks specialty tiers are one of the innovations Connecticut should try – while other states like New York, Hawaii, Maine and Vermont are passing laws to ban specialty tiers, and Congress is considering an exceptions process under Medicare for people faced with these costs.

Some would say that the need to bring down health care costs is paramount, and if specialty tiers discourage patients from taking expensive medications, well, maybe that’s for the best.  But what happens when patients cannot access the treatment they need is that they get sicker, their disease spirals out of control, they are absent from work and lose their jobs and their health insurance, they go on disability and Medicaid or Medicare – and guess what?  We the taxpayers pay a far greater cost in the end by losing productive members of society to disabling illness that could have been avoided had care been affordable.  It doesn’t take a genius to realize that the long-term costs of specialty tiers far exceed the cost of providing affordable care in the first instance.  But without someone with experience dealing with patients faced with specialty tiers providing input, all of this was lost on Mercer – and, presumably, the Exchange Board.

This is one of many examples that are pointed out in our comments and the comments of many other consumer advocates to the Mercer report.  The virtues of a Basic Health Program and forcing insurers to end discriminatory pricing, and the lack of consideration of the long-term positive effects of reform on health care costs are minimized or even entirely ignored.  If there were strong consumer voices on the Exchange, these sorts of omissions could not occur.

Hopefully, the General Assembly will correct this omission by adding consumer voices to the Board of the Exchange at the start of the upcoming legislative session.

Jennifer Jaff is the executive director of Advocacy for Patients with Chronic Illness, Inc.