Obamacare and Diabetes: Will the Affordable Care Act Live Up to Its Promises?

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Perhaps you are one of the millions of Americans currently wondering what is going to happen on October  1st, the day when the Health Insurance Marketplace of the Affordable Care Act (aka “Obamacare”) opens for business.  This is a particularly important question for people with diabetes because at the moment, the fact that we have a pre-existing condition leaves us with very few – if any — options for getting health insurance without an obliging employer or spouse (or other access to a group plan).

I can’t personally answer the question of what’s going to happen because, as I’ve learned by attending multiple diabetes- and healthcare-related conferences over the past several months, no one knows the answer to that question. Certainly not the patients – but also not the doctors, not most government employees, and not even representatives from the health insurance companies themselves. The New  York Times is publishing a series of articles revealing details as they become available (for the latest, click here) – -but the best source of consumer information at the moment is healthcare.gov, which has a short, anonymous intake questionnaire you can fill out to get a sense of what your options may be on October 1st. However, as the site itself says, the detailed cost, coverage and enrollment info won’t be available till that date.

What is currently clear – and what I want to encourage awareness and discussion about here – is that the law is already affecting the insurance market (and physician reimbursement) in tangible ways. And as a result, some of the things we’ve been promised, like coverage for preexisting conditions and the option to buy insurance on our own (presumably while still being able to see our current doctors) may not work out exactly how many of us have hoped or expected.

I recently attended the World Congress Summit on Patient Advocacy and Engagement, a conference designed to bring together pharmaceutical companies and patient advocacy groups. One of the speakers was John Rother, the CEO of an organization called the National Coalition on Healthcare, a non-profit, non-partisan  “organization of organizations” that Rother founded to “help achieve comprehensive healthcare change.” As part of his talk, he referred to a September 22 article in the New York Times by Robert Pear titled “Lower Health Insurance Premiums to Come at Cost of Fewer Choices.”  According to Rother, it lets the cat out of the bag about how, exactly, insurance companies are planning on complying with the pre-existing condition mandate while still controlling their premiums and costs. And from the perspective of a complicated disease like diabetes, it doesn’t look good.

The article’s lead paragraph explains the crux of the issue: “Federal officials often say that health insurance will cost consumers less than expected under President Obama’s health care law. But they rarely mention one big reason: many insurers are significantly limiting the choices of doctors and hospitals available to consumers.”

They’re doing so through what Rother referred to in his talk as “narrow networks,” and which the Times describes as follows: “To hold down costs, insurers say, they have created smaller networks of doctors and hospitals than are typically found in commercial insurance. And those health care providers will, in many cases, be paid less than what they have been receiving from commercial insurers.”

As the Times points out, this approach has consumer advocates and health care providers quite concerned, in part because “decades of experience with Medicare, the program for low-income people, show that having an insurance card does not guarantee access to specialists or other providers.” Translation: come October you’ll have the right (and, indeed, obligation) to purchase an insurance plan, regardless of preexisting medical conditions — in fact, the current expectation is that once the exchanges open, they’re going to be flooded with people with pre-existing conditions who are elated to finally have the option of buying health insurance on their own. But here’s the catch: that plan may not cover the services or providers that these people are accustomed to or need.

How much more restricted will these networks be? A few examples cited by the Times: In New Hampshire, Anthem Blue Cross and Blue Shield, a unit of WellPoint, will be the only commercial carrier offering health plans in the state’s exchange. Its network excludes 10 out of the state’s 26 hospitals.

In California, the statewide Blue Shield plan’s new network for the health exchange plans has only 53 percent of the doctors in its broadest commercial network (30,000, down from 57,000) and 78 percent of the hospitals in its broadest commercial network (235 versus 302). If that doesn’t sound like a big deal, consider that all five of the medical centers of the University of California are excluded, as is the Cedars-Sinai medical Center near Beverly Hills. Too bad that the UC centers offer some of the best diabetes care in the country – if I still lived in CA and were in an exchange, I’d have to find an entirely new diabetes center and team. (Also worth noting: many physicians are associated with hospitals even if they don’t practice at the hospital itself; if the hospital’s not in the network, these doctors likely won’t be, either.)

The executive vice president of Blue Shield of California defended its decision to limit its network for the exchange, saying that “not many folks who are uninsured or near the poverty line live in wealthy communities like Beverly Hills.” But as a senior vice president of an organization that represents 9,000 community health clinics around the country told the Times, “’We serve the very population that will gain coverage – low-income, working class uninsured people. But insurers have shown little interest in including us in their provider networks.’”

And as for reimbursements, according to Barbara McAneny, a cancer specialist in Albuquerque interviewed by the Times, the insurers in the New Mexico exchange “were generally paying doctors at Medicare levels, which she said were ‘often below our cost of doing business, and definitely below commercial rates.’” This highlights the serious but often unacknowledged issue of physician reimbursement: many doctors already refuse to accept patients on Medicare or Medicaid because it doesn’t make financial sense. So why would a competent doctor agree to be a part of a new network with reimbursement rates that low? And, if all networks begin to offer reimbursements at Medicare rates – again, which are often below the cost of doing business (that’s part of the reason hospitals bill private insurers and non-insured patients at such exorbitant rates) — why would anyone want to enter the field of medicine to begin with?

Low reimbursement rates are an issue that’s already contributing to the United States’ severe shortage of endocrinologists – which, is really quite shocking. According to a 2011 estimate, there may be as few as 1,000 board-certified endocrinologists serving the country’s 6,000 or so hospitals. The American Diabetes Association estimates that 25.8 million Americans currently have diabetes, and seven million are thought to have pre-diabetes.  Divide 33 million patients by a thousand endocrinologists, and you’re left with one endocrinologist per 33 thousand people with diabetes (and remember, endocrinologists are often concentrated at particular hospitals, and don’t necessarily specialize in diabetes).

Getting back to insurance networks, there are obviously situations in which the breadth of an insurance network might not matter: if you’re one of the millions of relatively healthy Americans who cannot afford health insurance, then some of the plans on the exchanges – which the Times estimates may cost less than $100 a month per person after federal subsidies – may be fantastic options. They’ll provide preventive and catastrophic coverage, as well as access to a consistent primary care physician, which many people in America don’t currently have.

However, I’m beginning to get the frightening feeling that those of us with chronic, complicated and expensive diseases may be about to be in for a huge bait-and-switch. Sure, we’ll have the ability to buy insurance through the exchanges – insurers can no longer just say no. But if the insurance plans being offered don’t cover the services or doctors that we need to manage our diseases, then what’s the point of signing up for the plan? Access to health insurance doesn’t really mean very much when that health insurance doesn’t provide access to the medical care its members need. It’s like receiving a paycheck in imaginary dollars.

The irony is that most of the concern over the health exchanges that’s been expressed so far has been about healthy people: why would someone with no medical issues bother to sign up and pay for a health plan, especially when the penalty is so low? It’s a genuine concern, based on the possibility of creating a health insurance “death spiral of adverse selection” that’s already caused disasters in the private market (see this article about Harvard’s experience as an example.  The basic idea is this: sick people are expensive; healthy people are cheap. You need healthy people to keep costs down. Presumably many people with pre-existing conditions are going to flock to the new health exchanges, since it’s their (our) only option to get insurance. But preexisting conditions like diabetes are expensive. If these “sick” patients are not balanced out by healthy patients, then the health care plan’s costs will rise beyond what its premiums can cover, which will make its premiums have to go up, which will make the remaining healthy people more likely to leave it, which leaves it with an even sicker population base, which makes its costs go up, which makes premiums go up, and on and on and on. (And as an interesting psychological side note, penalties for not having insurance will come off of your tax refund. But since most people think of any tax refund as positive, having a slightly lower one is not going to feel as punitive as having to pony up new money out of your pocket. In fact, I’d argue many people won’t even notice it.)

The issue of getting healthy people to join exchanges is extremely important. However, what’s been lost from this debate is the effect on “sick” people — those of us with diabetes and other chronic diseases or conditions that require access to particular specialists or higher cost treatment and medications. Many of us are quite likely to flock to the exchanges, under the belief that we’ll finally be able to get group coverage at an affordable rate – that’s one of the major selling points of the whole Affordable Care Act. But what’s not being discussed is what will happen if the new narrow networks don’t actually cover the doctors and services we need. If that’s the case, we may be left with two equally unappealing choices: either we opt out of buying insurance coverage, pay the penalty, and continue attempting to cover our enormous medical bills out of pocket, or we sign up for a plan through the exchange despite the fact that the network is so narrow – and then pay enormous medical bills out of pocket. As Adam Linker, a health policy analyst at the North Carolina Justice Center, warned the Times, “under some health plans, consumers can end up with astronomical costs if they go to providers outside the network.” It’s a heads-you-win, tails-I-lose kind of situation. But hey, at least in one option you’ll have your flu shot covered.

As for those of you with access to commercial insurance – whether it’s through your employer or your spouse – don’t rest too easy: as John Rother, the speaker I listened to yesterday described, employer-sponsored health insurance may not be long for this world. This isn’t directly due to the Affordable Care Act (though ACA may well accelerate it); it’s a trend that’s been coming for years. But that doesn’t mean it’s not worrisome.

As Rother explained, just as most employers have ditched traditional pensions in favor of contributing to accounts like 401ks, they will soon begin to ditch traditional healthcare plans in favor of simply providing employees with money to use on the exchanges. Again, that might be okay if the exchanges provide the option of paying more money for a better plan. (Some of us really do need so-called “Cadillac plans”!) But if there is no better option, if the only plans on the exchange are narrow networks of providers who have agreed to accept reimbursement rates that may be lower than their cost of doing business . . . it doesn’t leave me feeling too optimistic about the future implications for my (and our) health.

In his talk, John Rother suggested that the health exchanges will be a large improvement over the ill-fated HMO movement of the mid-1990s, the health managed organizations that made getting an appointment with anyone other than your designated primary care doctor an enormous pain in the ass. Supposedly, this improvement is due to the way that coverage will be decided: it will be “evidence-based,” rather than simply about cutting costs.

But I’m not convinced: in HMOs, doctors controlled access to which specialists a patient could get a referral to see. In the new narrow networks, the insurance company gods will limit your options via the network of covered providers. As for “evidence-based medicine,” it’s a great concept (who doesn’t like evidence?) but there’s a problem: a treatment that might work for the aggregate might not work at all for you as an individual. (For example, my father has a fatal allergy to statins, but Medicare will not reimburse him for pharmaceutical levels of niacin pills because “evidence” and “big data” show that statins are the most effective treatment for high cholesterol.) Science is only beginning to understand the genetic differences between people that affect their disease risk and the way they respond to certain drugs. These differences, which sometimes can be fatal, are not yet well enough understood to be captured in government or insurance company data. Indeed, “evidence-based” treatments for a population (the government’s direction) and “personalized medicine” (science’s direction) are fundamentally incompatible.

Lastly, the idea that “big data” knows best ignores the fact that in cases like diabetes, patients themselves are often the experts in the management of their disease. I know, for example, what approach to carbs works the best for me, and I’ve worked to find a healthcare team that will support me. Yes, there are many situations – say, an emergency appendectomy – where certain treatment options work better than others in ways that big data readily reveals, and which the average patient would not know.  But diabetes is often not one of them.

There is no easy solution to any of this. Too many people are uninsured, good healthcare is expensive, and it is naïve to think that health insurance companies could ever absorb the pre-existing-condition population without developing strategies to control their costs. But while I don’t have the answer to America’s health care crisis, I do know this: we are all slightly different, whether it’s in how we interact with our doctors, or in how our bodies respond to particular drugs. Big data and “evidence-based” medicine do not reveal those nuances. “Narrow networks” are not going to pay for them. And that makes me scared.

Catherine Price is the author of 101 Places Not To See Before You Die (101worstplaces.com).  She writes the blog The Reluctant Diabetic. For more from Catherine visit Catherine-Price.com.

Follow Catherine on twitter (@catherine_price)

Comments (3)

  1. Sarah at

    I’m so glad to finally, FINALLY read an article by an actual person with diabetes that isn’t kissing the ass of Obamacare and all the people for it.  It’s going to be disastrous.  Maybe not right away, but eventually, as you so succinctly noted here.

  2. Rick at

    Poorly constructed article, feels like I was reading a panicked letter to the editor from 1994 about the HMO evolution.  Every point you listed are issues that have predated the ACA for years or decades.  Commercial Insurance providers have been “narrowing” network access in HMO AND PPO plans for over a decade, the ACA hasnt accellerated anything, it is just a convienant excuse for Insurance Carriers.  Also, the UC System of MEDICAL GROUPs will still have access on many plans thru the California Exchange.  The California Market is unique and should not be used as a National example because the DOFR on patient care is fragmented among Hospitals, Health Plans AND Medical Groups.  The rest of the nation uses a simpler DOFR where risk is held by only Health Plans and in rare occasions Hospitals. 

    For your experience thru the UC Health system @ CAL is also limited as CAL Medical Providers dont see anyone who is not a Student, Employee or relative.  Other UC Medical Groups (UC DAVIS, LA, SF) will continue to see patients thru offered plans on the exchange but NEARLY all of the top ENDOs from those systems are not accepting new patients anyways because they are research doctors.

    The ACA also forces commercial plans to offer APPEAL process which were never available before.  Though this system is burdumsome it is better than the closed door system used currently by HMO/PPO plans.  As for your fathers case, please dont confuse Fee for Service Traditional Medicare with Medicare Advantage Plans (HMO).  In traditional Medicare your father would be eligble for alternative care but HE is responsible for completing the AUTH process to use an alternative treatment.  If his doctor was in agreement with this treatment he shouldnt find that much resistance from Medicare (probably will take time to complete the AUTH).

    Last, your perception of “Personalized Medicine” is currently not supported by any Insurance Plan at any level.  Most probably because it is untested and still in “pre-infancy” stages.  Even the best genetic scientists will tell you that Universal Genetic Information is still decades away.  I think what you want is “Concierge Medicine” for the entire nation but that is impracticle.  Especially if you discount the positives of big data so readily.

    As a Type 1 diabetic I am happy that more diabetics will get access to care they never had before.  Fear of the unknown is a handicap.

  3. Ann at

    Amen Rick!!! 

    I live in a state that does not have an insurance pool, so when you are rejected from health insurance you have no option, other than finding a job that is tied to a benefits program.  Then you are roped into whatever plan they can afford for you to have.  14 states currently have this “standard of care.” I’d rather pick my own! I also am a small business owner and I’m looking forward to the opportunity to actually shop for health insurance!

    Also what about the fact that most people, regardless of age, at minimum need a catastrophic plan, or otherwise they could end up with a $54,000. hospital bill and no way to pay it, like this women: http://www.nbcwashington.com/news/local/Snake-Bite-Victim-Gets-55K-Hospital-Bill-218891991.html  And who do you think pays for it, when she doesn’t?  Tax payers do.   

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