The problem with the Affordable Care Act that no one is discussing

It has made the user experience of healthcare worse.

On Tuesday, I went to see a new provider. When she discussed treatment options, I mentioned that cost was the biggest roadblock to my continuing. I said that neither the plan I’m on presently nor the plan I was on last year has paid much of my expensive treatment over the last year. I want my providers to know that money is a limiting factor in ongoing treatment. We scheduled 6 more appointments.

I spent the rest of that morning sorting out recent health expenses. Insurance reduced by half a $300 physician’s visit from December. (Naturally, I didn’t know what the visit would cost when I scheduled it nor was I told when I checked out of the office.) An urgent care clinic visit for an awful cold/sinus infection cost $125. I had paid $50 at the time of the visit so $75 is outstanding. (I think I also paid $40 for drugs at the visit.)

Usually, the question from a provider when I mention cost is, “What insurance do you have?” When I answer, the response is, “They should cover this.” But they don’t and they haven’t.

I left an unhealthy situation at a full-time job in March of 2014 and started freelancing. Not only was the job I’d had for the previous two and a half years stressful and unhealthy, it left me no time to seek treatment for chronic pain I’ve lived with for 22 years.

In April 2014, I purchased one month of COBRA coverage for about $450. By May, I had bought my health insurance through the new Affordable Care Act “marketplace” in California: Covered California. From May to October, I paid $230 each month for a PPO that covered almost none of my health costs. I received no tax credit to reduce my monthly premium. In November, I moved to Tennessee (which does not have a state marketplace) and went through HealthCare.gov to purchase a plan for $212 per month. I received a tax credit of $3 per month, reducing my premium to $209. In January, that premium was raised to $258 (my $3 credit reduces it to $255).

(Using some rough math, that’s around $2730 of insurance that hasn’t covered much. On top of that are medical expenses which are at least $6295 and still trickling in. I paid cash for most of those at the time of service. My travel—for several appointments were in different cities or counties—I estimate at about $480. This is a total of $9505 in expenses since last April. My income over that time was about $12,000. But when I applied for insurance in California, and then re-applied in Tennessee, I was told both times that I had to count the non-freelance income I earned from January to March 2014 when I had insurance through my job. So to Covered California and then to HealthCare.gov, it appeared as though I earned more than twice my freelance income.)

Because I am a freelancer, I don’t have a fixed yearly salary. And because I started freelancing in 2014, the first year of Obamacare, I don’t have any tax history as a freelancer for the ACA to draw upon. When I signed up for healthcare through Covered California (a process that took days of examining plans, trying to get through on the phone or chat, talking to my physician’s office about what plans they accepted, et cetera), the form field for my income (as I recall) required me to estimate per month for the year. I’d left my full-time job with a couple of healthy projects ahead. I estimated as best I could for the remainder of the year. I didn’t qualify for assistance.

In September, when my income had been reduced for a few months, I contacted Covered California to find out if I could get a retroactive reduction. In the online chat with a representative, I was told there was no retroactive assistance and the change in my income that I was then reporting would qualify me for Medi-Cal (the state plan that I’d been told none of my doctors accepted).

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So I was in a difficult position: continue to pay a premium I couldn’t really afford for insurance that wasn’t covering much (if any) of my doctors’ visits or switch to the state plan that would change my care entirely. I continued paying for the plan I had knowing that I was to have an MRI soon. (It wasn’t covered. I got a bill for $1500.)

What is wrong with the ACA is what is wrong with healthcare in general.

And what is wrong with healthcare is this:

It is complex. It is closed and opaque. It is not user friendly.

We don’t know what visits and tests cost before we submit to them. We don’t have choice. We can’t opt out. We can’t change plans and we don’t understand the plans we have. We can’t easily see and transport all our records.

Most of your healthcare providers want you to sign up for their internet portal these days. So we have more logins and passwords. I haven’t seen a healthcare portal yet that’s well designed (certainly not on mobile). We, the users, take on the added complexity of navigating a new system (which we won’t use often enough to learn intuitively).

Added to that, doctors seem unaware of the complexity. Their response of “Insurance should cover this” doesn’t cover it. The best information on navigating it all comes from agents and billing personnel—none of whom are involved in planning our care.

Add the ACA to that mess

When I moved to a new address in California, I called my health insurance company to change the address. Initially, I’d logged into their web portal to try to change the address there just as I had with my bank, car and home insurance, and every other service I use. When I couldn’t make the change online, I found an FAQ that directed me to call them. When I called that number, I was told to call another number of theirs. When I got a human being on the line, she told me to call Covered California. “But you’re my health insurance company. Don’t you need to know my change of address?” I asked.

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When I cancelled my health insurance in California to move to Tennessee, I called my health insurance company. They told me to call Covered California. When my health insurance company continued to send me bills, they told me to call Covered California to cancel those. When I log in to my (now former) health insurance company’s web portal, I am told my policy is cancelled. When I log in to Covered California’s portal, I can’t see any details about the policy.

And, importantly, when I opened a chat with Covered California to find answers to this problem, I was told to call.

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These steps are easily processed here, in plain text. It just looks like a runaround. But that doesn’t capture the frustration I feel every time I wait in a chat queue to be told to call a number to go through a lengthy automated call system to wait on hold to be told to call someone else to wait on hold again to be directed to a web portal. On Tuesday of this week, with a fresh crop of issues, I estimate I spent 4 hours dealing with calls, chats, and emails. How does one do that AND work a full-time job?

What the ACA has done is drop a large amount of complexity on top of an already complex system. There are more layers than ever before and less answers.

Those who created the law have not considered the user experience. And they’ve not considered what really makes care “affordable.”

“Affordable” doesn’t just refer to monetary cost

The name of the law is the “Affordable Care Act” and the metrics by which it is continually judged are the number of users and the monetary costs. As a user, I haven’t experienced any monetary relief and I’ve incurred greater technical debt and time debt.

When we use an unfamiliar system, like CoveredCalifornia.com, we take on the technical debt of the system. That can be be minimal (if the process is well-designed, allowing opt-outs along the way and clear information about the system) or expensive (with their lack of information, difficulty getting in touch, inability to see the full process and opt out of steps). We also take on the time debt to use the system. Every hour we spend chasing an answer is a debt we incur. Every hour makes the system less affordable to us.

But the ACA didn’t just give us one new system. It gave us dozens. Every state with a “marketplace” has its own system. HealthCare.gov is a system. All the insurance companies created new systems or changed their existing systems to accommodate the new regulations. (And just wait until tax season.)

So this technical debt and time debt is immense. When we begin to count user experience, there is nothing “affordable” about the new system(s). And user experience is the only metric that should count.

When you only have a hammer, every problem looks like a nail. And to politicians who only have policy, every problem looks like it needs a law. We often try brute force to fix a problem at first. I pound the dashboard when my car stereo sounds fuzzy. We push harder when the bed frame won’t fit through the door. But when we’re dealing with systems, brute force never succeeds. Policy and law are brute force dressed as intellectual solutions. If you can’t choose not to do a thing, it’s because it is operating by force.

When brute force doesn’t succeed, we have to take the problem apart to fix it. We break down the bed frame and remove the door from its hinges to move the frame through. We pull the stereo out and rewire it. If we find something more complex in our examination of the issue, we remove it completely. We have to open things up to see what’s wrong. We have to remove the broken pieces. We don’t fix a faulty car engine by attaching another car engine to it.

And when the problem is systemic, we can’t add another system on top and believe it will fix the underlying issues.

Unfortunately, that is what the ACA has done. The engine that ran healthcare—insurance companies and providers and the government—was broken. Instead of opening it up to simplify it, the politicians built another engine and duct-taped it to the old engine.

Open and Simplify

We need to approach the systems of healthcare as any other technical system we use. Let’s open them up, all the way up, and examine the source code. Then let’s limit our scope and rebuild with the user in mind.

The easiest and quickest way to open healthcare is to post all prices. It is absurd that healthcare costs are so confusing. Opening the pricing would allow patients to choose what they can afford. That means telling us what a visit costs when we book it and making the prices of tests visible. If there is a cash cost option, patients should know. Stop the opacity. This helps immediately because opening prices reduces them.

We also have to open the plans. Patients need to be able to select new plans throughout the year. We need a real marketplace where competition across state lines creates lower prices and more options.

Then we have to simplify it all. Stop the mountains of paperwork. Create sensible billing practices with easy payment plans. Redesign the web portals with user experience in mind. Provide lots of opt outs and help links.

We don’t open and simplify by creating more policies and bureaucracy. We need less. When the bureaucrats and insurance personnel outnumber providers, complexity and expense are assured.

The sense of coming disaster

When I spend a day dealing with all the bureaucracy involved in my healthcare issues, I feel as I have in the presence of real emergencies. My frustration with the systems twists into a fear of a looming disaster. It is so overwhelming to be confronted with all the confusion and complexity that I tell myself those in charge know the gravity of the situation and are working to fix it. But then my fear grows because I think those who created the ACA are unaware of the disaster because they are merely counting users and dollars (and other dollars) which show the program to be a success.

The difficult position again

One of the things I attempted to do on Tuesday was to report a change in my income (lower, again) to HealthCare.gov. I hoped I would qualify for more than $3 of tax credits. I filled out a new application because nothing directed me on how to “Report a Change.” (It turns out I should have opened my 2014 application to find this option.) When I completed the new application, I was taken to the usual “Choose a Plan” screen. All the prices looked the same. I saw no explanation of whether or not I qualified for more tax credit. I didn’t even understand if my new income change had been factored into the plans offered.

I searched the site and found a way to “Find Local Help.” I called the first number. It rang with no answer. I emailed the address listed. My email bounced immediately. I called the second number. A robot answered and put me on hold. Ten minutes later, the robot told me that the office was closed for the day.

I called HealthCare.gov and waited for 40 minutes to talk to someone. He looked at my new application and told me that the income I reported four months ago was too much to qualify for a greater tax credit and now it is too little. Since Tennessee does not have the extended Medicare services (a state insurance plan to cover people who can’t afford a private plan), I have been granted an exemption.

That means it is “legal” for me not to have health insurance.

So here I am again. I can continue to pay $250 per month for my insurance and hope that my new treatment is covered once I hit my deductible. Or I can cancel my policy and hope I don’t need more serious treatment.

It’s all academic really. As soon as I make more money, I have to go through the whole enrollment process again. And whether I like it or not, my plan, deductible, copays, and tax credits may change again.