My Health Care Reform Fear: How are Insurance Companies Going to Cover Expensive People Like Me?

I’m a self-employed American living with Type 1 diabetes – an incurable autoimmune disease that requires constant daily management to keep me alive. While researchers still don’t entirely understand what causes Type 1 – which is different from the much more prevalent Type 2 and isn’t related to lifestyle - one thing is for sure: Type 1 diabetes is a preexisting condition that automatically excludes me from any individual insurance plan. I’m exactly the type of person, in other words, who should be cheering the healthcare legislation just passed by Congress and signed into law.

But instead, I’m terrified.

I spent the morning before the bill’s passage as a guest speaker at a pediatric diabetes symposium put on by the Diabetes Center at the University of California San Francisco, one of the country’s top centers for diabetes research and care. I heard firsthand reports from doctors and researchers about some of the advances – both medical and technological – coming down the pipe for people with Type 1 diabetes, and felt myself becoming excited about new advances that might help reduce the burden of living with this disease. As I listened, I periodically checked the numbers on my continuous glucometer, a small, cutting-edge device that allows me to see my blood glucose levels in near-real time. I was particularly concerned because I had taken a shot of a medication called Symlin, a synthetic version of a hormone called amylin that helps reduce spikes in your blood sugar levels after meals. It, too, has only recently become available – and is not yet widely used.

Now, I am no fan of insurance companies. I had already spent three hours that week on the phone with Blue Shield. But despite the endless hassles, I am grateful for the end result: I have the most cutting-edge diabetes gear available in the world.

So here’s my fear with the healthcare package that just passed. Supposedly, this will require all Americans to hold health insurance – and millions of healthy people, like my husband, will subsidize the millions of expensive people, like me, whom insurance companies will no longer be allowed to exclude. On the surface, that is great. Far too many Americans with Type 1 and Type 2 diabetes don’t have adequate access to care. As a self-employed person myself, I know how difficult access to insurance can be.

The problem, though, is that people like me – the “sick” ones — are going to be flocking to insurance companies’ doors. People who are young and healthy are not. I don’t trust the idea of the universal mandate – partially because there are already lawsuits that challenge its constitutionality, and partially because actually enforcing it will require keeping an up-to-date record of the insurance policies of every person in America. That seems like a bureaucratic nightmare – and one that would be very easy to cheat. What’s more, with penalties that start at only $695 per year (and top out at $2,250 per family in 2016), the price of not holding health insurance is far less than the cost of many policies. For healthy workers, choosing to pay the penalty might actually save them money.

The result will be, one way or another, that insurance companies are going to end up with a hell of a lot more expensive people like me to cover. They’re going to have to say yes to us. That is going to cost money. To prevent damage to their bottom lines, they are going to have two major options: raise premiums (likely, if politically unpopular) and/or reduce the number of products and medications that are covered. And that’s going to have a negative effect on access to – and development of – new medications and technologies.

Think about it: is the continuous glucometer lobby large enough to prevent Blue Shield from deciding not to cover them? And what about Symlin, which has an enormously positive effect on smoothing out my blood sugar after meals – but isn’t necessary to keep me alive? Wouldn’t that be easy fat to trim? And once that starts happening, why would researchers and pharmaceutical companies put resources into developing products that have a limited audience and are unlikely to be paid for by insurance?

You see where I’m going with this.

For the moment, it’s easy to argue that there are a lot more people whose diabetes care is going to improve as a result of this bill than there are people like me, the fortunate elite who already have access to top-of-the line products. But it wasn’t that long ago when insulin pumps themselves were a rarity – as were electronic glucometers before them. New technologies start with “early adopters,” and eventually, thanks in part to the positive reaction (and insistence) from the first people who use them, they become widely available. With no profit motive – or guarantee of insurance coverage for their products — there is less of an incentive for companies to develop or offer new technologies. That’s part of the reason why insulin pumps, common in America since the 1990s, are often unavailable in Great Britain.

I want to be excited about this weekend’s bill, but instead, I am worried. No one likes to think of themselves as part of an insurance company’s bottom line, or as a potential profit for “big pharma.” But unless there’s revenue to be gained from new developments – and insurance companies are willing to cover their cost – the “cutting edge” of diabetes care is going to become increasingly dull.

Cross posted at A Sweet Life. Read about insulin pumps, glucometers, and more at asweetlife.org.

Comments