How My Family Experiences with Rare Disease Shaped Our Business

When my father was first diagnosed with Alpha-1 Antitrypsin Deficiency, there were over 100 companies distributing an augmentation therapy. Nursing agencies, specialty pharmacies, home health companies — all had access to the therapy.

Having 100 distribution points meant the manufacturer didn’t actually know where the therapy was. Since it was so spread out, they had no tie to the patients and, therefore, had no way to know what they needed. So, where did this leave my father? Where did this leave the other patients battling the rare disease?

I can tell you: It left us all lost. What my father and my family experienced and what I’ve heard time and again is that patients placed in a siloed world of care are lost.

Imagine it for yourself: First, I have an intake person to handle my intake. Once I’ve gone through my story with the intake person and talked through my diagnosis, I’m then passed on to the reimbursement person to look at my benefits. So, the person who I just cried with during the intake, connected with, and felt solace from, I never speak to again. Now, I’m talking to someone else. Then if my insurance needs prior authorization or an appeal, I’m transferred up the chain to yet another contact. Then once I’m approved, I reach a pharmacist who is reading from a call script, which makes me feel less like a patient and much more like a number. Then even once I’m on the therapy and I’m talking to patient advocate or a peer health coach. And guess what? I’m telling my story from scratch.

While the manufacturer of my father’s therapy eventually tried to bring it all back together by streamlining product distribution and access for the patients, the disjointed patient experience was forever imprinted upon me. So much so that when my partners and I started Optime Care, we knew we would never take this siloed approach to care.

The lack of a consistent point of contact means starting over on every call. When we started Optime Care, we knew we’d do it differently. Each employee would be an expert in one area, and we would dedicate them to the disease state and the product. 

Instead of having a large group of people working in functional areas and handling many products, we create the expertise in a single product and invest in patient relationships. Each patient is given consistency through a personal care coordinator. The re-imbursement person, prior authorization person, contact for the appeals process – they are one in the same — reached by one direct phone number.

Instead of feeling passed on from one person to the next, made to feel as though they are a number, not a person, not a patient coping with a rare disease, this is what we hear: My care coordinator cried with me from the beginning, walked beside me through the daunting insurance process, worked with my physician, and, at any point of the treatment journey, I knew who to call.

As a result of this consistency of care and trust in relationships, we started hearing from patients that they have never received treatment like this. They have one number programmed into their phone and it’s a direct line to “Mary” for help. We started hearing from physicians who say there are multiple products on the market, but they choose us for the consistency for our patients and for themselves. They can call us and get answers for patients and for themselves because we experts in the disease state.

Too Much Concern for Short-Term Profit Masquerading as Efficiency

What I hear often today is the same thing I heard years ago from pharma manufacturers: This model is built for “access” and for “scale.” And that is completely true. At least, from the manufacturers’ point of view. But all I can tell you that the model is the opposite from the patients’ point of view and experience. So I ask you, which one matters more? Do you want to be efficient, or do you want to care for patients and be excellent at what you do?

I challenge you: Listen to your patients. Don’t just have a quick advisory board. Have the real conversations with patients. Ask: What has happened when you moved? What has happened when you change jobs? What happens when you navigate care through multiple specialty pharmacies or changed pharmacies? 

Simplify the path for patients and experience increased compliance. That is what drives the scale and profits you seek.