A tale of too many patients.
My family has a long history of alpha-1 antitrypsin deficiency, an inherited condition that can lead to serious lung and liver disease. So I know firsthand how patients who have a rare or orphan disorder can endure literally years of confusion and misinformation as they try to learn what’s wrong—and what to do about it.
Some studies say that it can take seven to 10 years—and three to five physicians—to gain a correct diagnosis and understanding of a disorder. Then the day comes when you finally get an accurate diagnosis. You nod your head as the physician tells you what it is, but you don’t really know what it all means, or what to do next. You may have heard the physician say something about prescribing a therapy but you’re in a fog, confused. When you get home, you’re left to ask “Dr. Google” for some answers.
Before long, a specialty pharmacy calls to fill your prescription for a high-dollar drug. You worry that you can’t afford it. Before you start the therapy, you have to deal with a “prior authorization process” (whatever that means)—and you’re concerned your insurance won’t cover the expense. Then someone from something called a “hub” calls, and you still don’t know what’s going on.
As the system grinds on, you feel more and more isolated, and alone. How did we get here? And more importantly, what can we do about it?
In my experience, we arrive at these care bottlenecks because of a pervasive mindset. And it is not a mindset that is conscious. It is like a default setting that every player in the supply chain of delivering therapies can have. I like to call product-first. What follows is how to identify that mindset and, very simply, what to do about it.
The problem with the product-first mindset.
A drug manufacturer’s focus is quite naturally to find the best way to get the product to market and give patients access. The manufacturer likely starts with the obvious: what’s the easiest and most convenient way for a physician to order the drug?
With the distribution network in place, the assumption is that the physician has all the tools necessary to promote compliance—including deep knowledge of the disorder and therapy.
With a nod toward meeting patient needs, the manufacturer may add a patient services hub and perhaps a PAP (Patient Assistance Program), to help ease the financial burden. Despite good intentions, these steps add new layers of complexity that patients must navigate. As I said, I know this is what happens from personal experience.
But this product-first model has been the status quo from the very beginning. Because it is the way therapies have always been brought to market, the belief is that it’s the best way to encourage physicians to prescribe a particular drug. After all, if physicians see an easy way to order the product—and an effort to provide patient support—isn’t that the right approach?
Research conducted by one of our partners demonstrates otherwise. This study found that physicians choose brands based on the level of support provided (not just ease of access to a drug). As opposed to choosing a disjointed, hub-and-spoke model, these physicians preferred a patient-first approach that provides comprehensive support—all from a single source—to patients, physicians and office staff.
A call to put patients first.
It’s time to remanufacture the beliefs of the manufacturer. By focusing on the product and its distribution—rather than putting patient needs first—manufacturers miss the opportunity to build a truly comprehensive support system that benefits all stakeholders.
With a true, patient-first model, the moment-of-truth conversation between physician and patient is quite different. After delivering the diagnosis, the physician can reassure the patient by describing how an entire team of healthcare professionals who specialize in the disorder is ready to help.
On the very first call, the patient learns what he or she needs to know about the disease and its treatment, including what happens next. This team lets patients know they’ll walk beside them every step of the way. They ensure that the patient understands fully what’s going on. After the initial conversation, the patient receives regular calls to check in on health status, as well as provide additional educational and financial support.
Once patients know someone is in their corner, a remarkable thing happens: they become empowered to take charge of their own health. Patients are more compliant and live a more active, productive life.
What made the difference? It’s no exaggeration to say a patient-first support program. In our experience, countless thousands of patients have shared how this approach has literally changed their lives—giving them the encouragement and support to keep battling their disease effectively.
Physicians see the difference in the health and wellbeing of their patients. And they come to realize that a patient-first approach meets their own needs as well. The model addresses not only the clinical challenges—but also the financial and operational ones—of caring for those with rare and orphan diseases.
The business benefits are clear.
For manufacturers, there’s a significant opportunity to maximize sales. To begin with, physicians are more comfortable and willing to prescribe the product because they know they have a complete support system for both patients and office staff.
With assistance to navigate the prior authorization process, patients get on the therapy sooner and stay on it longer. And patients have ongoing support to navigate changes in their health or payer relationships.
As for payers, a patient-first model maximizes their investment. Dollars are spent more wisely, because therapies are being used appropriately by physicians and patients alike.
The future is patient first.
What is the impact of empowering patients to take ownership of their own health? Let’s start with compliance: maintenance medications have an average rate of around 40 – 50%. That typically increases to about 60 – 70% for specialty medications. By taking a patient-first approach to rare and orphan drugs at Optime Care, we see compliance rates above 90%.
We see a world where patients begin to understand how important the therapies being prescribed really are. Patients no longer fear being prescribed a medication or going to the doctor—because they know there’s a support mechanism to guide them through the journey. So the overall health paradigm works better: more quality patient outcomes, at a lower overall cost to the health system.
A patient-first support system harkens back to the days when healthcare professionals had more time to spend with patients. Putting patients first brings back that partnership for better health. We live in a fast-paced world. And health care is not immune to constant disruption. It may seem that a patient-first level of intimacy would be hard to achieve, but, honestly, it takes less time and creates a relationship and therapy program that can better adapt to change.