My grandfather had Alzheimer's. Like many families facing a serious diagnosis, we ran into two different problems.
The first was scientific: there were not enough effective treatment options. That is the problem most people think about when they think about diseases like Alzheimer's, cancer, or rare autoimmune conditions. We need better research, better clinical trials, better diagnostics, and better therapies.
That problem is part of what first drew me into neuroscience. I spent time researching brain diagnostics and therapeutics because I wanted to understand how new treatments move from research into the real world, and what it would take for patients like my grandfather to benefit from them.
But the second problem was operational: even when care exists, accessing it can be slow, confusing, and exhausting.
In my grandfather's case, part of the difficulty was simply understanding what treatment options existed, what a specialist could offer, what would be covered, what would be affordable, and how painful the process would be to navigate.
He ultimately did not seek treatment.
Getting care felt harder than living without it.
Realistically, I do not know that treatment would have changed the outcome. Alzheimer's is devastating, and the available options were limited. But treatments do not need to be cures to matter. They can still help patients preserve function, slow decline, reduce symptoms, or live a fuller last few years.
The harder truth is that he did not only face the limits of medicine. He faced the burden of the healthcare system around medicine. The waiting, the financial uncertainty, the paperwork, the back-and-forth, and the lack of clarity made the process feel almost not worth starting.
That is not unique to my family. Many patients and families in the U.S. approach healthcare with the same expectation: getting care will be painful, expensive, slow, and confusing. That expectation changes behavior before the first form is filled out. It can make patients less likely to pursue treatment, less likely to follow through on a referral, and more likely to give up when the process stalls.
This is the part of patient access that receives too little attention. A physician can decide that a patient needs a specialist, an infusion, a biologic, or another specialty medication. But that decision does not mean the patient starts treatment.
Before care begins, the patient often has to pass through referral intake, benefits verification, prior authorization, medical necessity review, documentation collection, scheduling, financial coordination, and site-of-care decisions.
Inside the healthcare system, those steps look like workflow statuses. Pending intake. Awaiting benefits verification. Missing documentation. Prior authorization submitted. Payer follow-up required. Ready to schedule.
For patients and families, those statuses feel very different. They feel like waiting.
The work has to happen. The waiting does not.
A referral sounds simple: one clinician sends a patient to another clinician or care setting.
The actual process is rarely simple.
A referral may arrive by fax. It may include a handwritten order, incomplete insurance information, missing labs, unclear diagnosis details, partial chart notes, or no documentation of prior therapies. Someone has to determine what was ordered, match the patient, confirm insurance, identify the correct benefit, understand the payer’s policy, collect the evidence needed to prove medical necessity, submit prior authorization, track the payer’s response, respond to requests for more information, and coordinate scheduling.
None of those tasks are optional. A patient should receive the right therapy, for the right diagnosis, at the right dose, in the right setting. Insurance should be active. The order should be clear. The clinical record should support the treatment. Safety matters. Medical necessity matters. Documentation matters.
But necessary work is often trapped inside an unnecessarily slow process.
Staff wait on hold with insurance companies. Referrals sit until someone has time to open the fax. Teams discover missing information days into the process. Payer portals require manual checks. Clinical documentation is spread across dozens of pages. One person knows how a certain payer handles a certain drug, and that knowledge leaves when the person is out or changes roles.
The tasks are necessary. The delay is not.
Why referral delays impact patient behavior
Healthcare operators think in terms of turnaround time. Patients experience time differently.
A patient waiting for a specialty therapy is not paused while the workflow is paused. They are living with symptoms, thinking about cost, weighing side effects, wondering whether the treatment is worth pursuing. The longer the process takes, the more time there is for them to lose momentum.
Take a patient with ulcerative colitis or Crohn's disease. During a flare, their gastroenterologist recommends a biologic. The referral goes out. Then the patient waits — through benefits verification, prior authorization, scheduling.
By the time it's done, the flare may have passed. They feel better. The medication may still be clinically important, but it no longer feels urgent, and they've had weeks to worry about side effects, affordability, and whether starting the drug is worth the effort.
That is how delay turns into treatment abandonment.
The same pattern appears across specialty care. A patient may seek care elsewhere. They may stop answering calls. They may assume the provider forgot about them. They may decide the process is too expensive. They may deteriorate while waiting. They may simply get tired.
In an operations report, that may appear as leakage, abandonment, or an incomplete referral. From the patient’s side, it may feel like the system made treatment too hard to pursue.
The real distinction: review versus idle time
Speed to therapy does not mean rushing clinical judgment.
There are moments when the right answer is to slow down. If the dose looks wrong, if the diagnosis does not support the therapy, if the patient may not be appropriate for a certain site of care, or if the record raises a safety issue, the case should be reviewed by a qualified human.
But much of the time in specialty medication access is not spent on clinical judgment. It is spent finding information, checking status, waiting on hold, re-entering data, and following up on tasks that could have been caught earlier. A nurse, pharmacist, or access specialist should be spending their time on cases that actually require their expertise, not searching a chart for a lab value or calling a payer to confirm routine coverage.
The best access teams already understand this instinctively. They separate judgment from coordination. They identify missing documentation early. They standardize payer-specific requirements and make sure every referral has a clear owner and a clear next action. They do not treat "pending" as an acceptable resting state.
From managed queues to instant access
Most healthcare organizations have spent years trying to manage the queue better. They redesign workflows. They shift staff. They build centralized teams. They hire consultants. They add dashboards. Some of that work helps.
But there is a ceiling to any model powered entirely by human coordination. People get backlogged. Handoffs fail. Institutional knowledge lives in people’s heads. Teams make mistakes because they are managing too much volume across too many systems.
The next version of specialty access should not be built around better queue management. It should be built around eliminating avoidable waiting.
An order comes in. The system understands what was ordered. It identifies the patient. It checks coverage. It knows what the payer requires. It determines what documentation is present and what is missing. It prepares the authorization. It escalates anything that requires clinical judgment. If the case is complete and appropriate, the patient can schedule care the same day.
The standard should be simple: if the work can be completed safely and correctly now, it should not wait until tomorrow.
Eventually, it should be instant.
