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OP-ED | The Cost of Excluding Consumers

by | Feb 6, 2012 9:47am
() Comments | Commenting has expired
Posted to: Opinion

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.

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(6) Archived Comments

posted by: lkulmann | February 6, 2012  1:22pm

Hasn’t it become obvious that CT is unable to competently manage public services for its residents? The D snap scandal at DSS, the Class Action Lawsuit for Medicaid eligible residents that DSS refuses to insure, the definition and implementation of The Medical Home and most of all the blatent disregard for federal regulations that are in place to protect us from all of this nonsense. When does this stop? There are rules in place for The Exchange and very specific criteria for quality healthcare plans under The AHA. Please stop playing with the health and well being of CT State Residents by making a buck off the sick ones. Let the federal government administer healthcare programs in CT.

posted by: GoatBoyPHD | February 6, 2012  2:22pm


Jennifer you represent a special interest group. A niche group of consumers, not the general interest.

Massachsusetts was up and running in one year while CT drags it feet CT style. Last week it was reported that the State of CT is still struggling with the fact it offers an inferior policy to Medicaid to the working poor and to those with some but minimal assets.

Solve those problems first.

One policy to heal them all.

Then add some options and riders for the niche consumers.

posted by: Jennifer Jaff | February 6, 2012  7:10pm

@GoatBoyPHD: Niche?  You mean the 50% of Americans who have at least one chronic health problem?

posted by: gutbomb86 | February 6, 2012  9:04pm


Goat, I don’t see that being a reasonable criticism. “Consumers” are all of us. If all of us are a special interest group, then so be it.

posted by: gutbomb86 | February 6, 2012  11:09pm


“Reasonable” isn’t the right word ... I guess I meant “fair.” It’s not really a fair criticism to suggest consumers should be penned into a niche as a special interest group. We’re all consumers, we’re all getting scr*w*d to some extent by the current system, and here Ms. Jaff is advocating that consumers have a seat at the table. We’re being railroaded. Again. And again. And again. And again. And again. And again. And again. And again. And again. And again. . .

posted by: WebHealthWriter.com | February 7, 2012  2:43pm

Thank you Jennifer for speaking out on behalf of consumers! We are ALL health consumers, but not everyone really understands what it is like to have to constantly fight to get adequate care. Chronic illness is not a special interest. It impacts us all. As a country we are only as healthy as our sickest residents. Lucky for those in government or even insurance execs, they don’t typically have to worry about health care because they have Cadillac plans that don’t restrict medication costs or require exorbitant deductibles. Only those who actually deal with illness day in and day, and/or the reality of basic, no frills health plans that most residents deal with can truly represent consumers on this topic. The members on the Exchange Board don’t adequately do that, and it is a huge disservice to Connecticut residents.