The day the healthcare system finally worked

Imagine finally getting a diagnosis after years of searching. There is a treatment. It works. Then someone tells you the treatment needs your insurer’s approval first, and that approval usually takes weeks. Weeks of not knowing whether the thing that could give you your life back will be covered. Weeks in which you are still sick.

In the US, that approval process is called prior authorization: before covering an expensive treatment, an insurer checks that it is genuinely clinically necessary. The principle is defensible. When a treatment costs more than $50,000 a month, for the rest of a patient’s life, somebody should confirm it is the right call. The problem has never been the check. The problem is how it runs: manual review, phone calls, fax machines, forms, and a queue. If you work in healthcare outside the US, you may not have prior authorization by name, but you know this bottleneck. Every system has a version of it, whether it is called funding approval, formulary review, or reimbursement assessment.

This is the third part of Denise St. Clair’s story. In part one, she spent eight years undiagnosed while her data sat in systems that could not talk to each other. In part two, she took that experience to CMS and helped write the first US rule requiring FHIR, the open standard that lets health systems exchange data in a common language, then worked on what would become the prior authorization rule, CMS-0057-F.

In this part, the policymaker becomes the patient again. And the rule she worked on gets tested on her own life.

Sick again

Years after her first diagnosis and recovery, Denise got sick again. She could not keep food down. Her weight dropped to 92 pounds (about 42 kg). Doctor after doctor, test after test, and once again no answer.

One thing had changed, though, and it is the darkest kind of progress. “This time, they were very careful not to tell me I was crazy,” she told me. “They did that once. That was in the record.” The difference was that this time the record moved with her. In her words, they could see it in her interoperable record.

Then she found a doctor who did something disarmingly simple. She admitted what she did not know. You are clearly very sick, she told Denise, and I have no idea what is wrong. But looking at your record, I can see you have never seen an immunologist. We have a wonderful one here.

The immunologist ran every test under the sun and asked questions no doctor had ever asked her. A month later, he almost came skipping into the room. I think I know what is wrong, he said. We need one more test. And if I am right, we are going to have to do this thing called prior authorization.

“Let me remind you what I do for a living.”

A diagnosis and a collision

The diagnosis was hereditary angioedema, a rare genetic disorder affecting around 0.002% of the population. Denise has one of its rarest presentations: swelling of the intestines, which had been quietly starving her. There is a treatment, a biologic medication costing more than $50,000 a month, for life. Getting it covered would mean prior authorization.

Here is where Denise’s two lives collided. At that exact moment, in her professional life, she was working with a community of payers, providers, and health IT vendors on electronic prior authorization: how to make the process she was about to enter run digitally, through shared standards, instead of by phone and fax. And inside that community, a debate was running. One camp argued prior authorization was back-office work. Administrative. Keep it away from clinicians, they said. Doctors want nothing to do with it.

Her own doctor demolished that argument without knowing it existed. He insisted on being part of every step. If the insurer needed more information, if any question arose about the care plan, he would be the one answering, because every step of this was a clinical decision about a treatment her life depended on. And he would keep Denise informed throughout, because it was her body and her data.

The next day, Denise walked back into the policy debate and told them what she had just lived: the clinician has to have the option to be in the workflow, and the patient has to be able to follow along. This is not administration. It is care.

One hour 

Then came the wait. After eight years of fighting for her first diagnosis, Denise knew exactly how much systems can make you wait, and what waiting costs. Could this really be it? Would the treatment be approved? Weeks of that feeling were the realistic expectation. A few days, if she was very lucky. The approval came back in one hour.

One hour, for a treatment costing more than $50,000 a month, because her insurer and her doctor were connected through electronic prior authorization. The request, the clinical evidence, and the decision moved between systems the way data is supposed to move. The rules she had helped write, running in production, on her own case.

“What I thought was my healthy was actually me at 50%. And so I’m the healthiest I’ve ever been.”

What one hour proves

Notice what did not change between the version of this story where approval takes weeks (or more) and the version where it takes an hour. The medical facts were the same. The cost was the same. The insurer’s obligation to check was the same. The only difference was that the data could move, and the clinician stayed in the loop while it did.

For the patient, that difference is agony versus relief. For the clinician, it is the difference between practicing medicine and chasing paperwork. And for the payer, it is the same decision, made faster and at a fraction of the administrative cost. Everyone in this story won, including the insurer paying the bill. That last point deserves its own piece, and it will get one: the business case for doing this properly is the final part of this series.

For eight years, nobody could see the whole picture, and it nearly cost Denise her life. The day the whole picture was finally available, to her doctor, her insurer, and herself, the system that had failed her for a decade worked in one hour.

What the hour changes

Electronic prior authorization runs on the same foundation as the rest of this story: FHIR, the open standard that gives health systems a common language. In the US, CMS-0057-F now requires payers to support it in the coming years, and elsewhere the same plumbing is being laid under different names.

The technology exists. Denise is living proof of what it does. What remains is the choice to use it. If you are a patient, the lesson of Denise’s hour is worth holding onto: the wait you are told to expect is often a property of the system, not of your illness.

When data can move, the same decision can happen a lot faster. So, the next time you are told to just wait, it is worth knowing that the delay may not be inevitable, and that it is reasonable to ask whether anything can be done to move things along. You are not being difficult by expecting the system to work for you.

Watch our full conversation about what happens when interoperability fails.