How to Pandemic-Proof Your Pharma Strategy

Health care starts with uncertainty. Most of us have that experience. Something is not right. And it is in that moment that we search for answers. However, what usually happens for patients is even more uncertainty. Health care systems have been inflexible for decades. No, you cannot do a telehealth appointment. No, your insurance company needs another form from your physician before you can get your prescription. No, you will have to see another specialist before we can even get you a diagnosis.

For people with rare conditions and the families that care for them, this road is even more uncertain and vague. They are working through a system that was not designed for them. Assuming they do not give up out of fatigue, it takes people with rare conditions years to even receive a diagnosis. And, with that knowledge, there is more uncertainty. Is there a therapy? How will I get it? How will I feel? How much is this going to cost me or my family?

Enter the pandemic, more uncertainty

Since the COVID-19 pandemic began, it only amplified just how inflexible and frustrating health care can be. People with rare conditions have been unsure if, when, and where to seek treatment.

Routine visits are forgotten. Non-emergency surgeries are cancelled. Rare patients overlook health concerns to stay out of medical buildings. Teletherapy (something that most physicians would not have considered) is suddenly relied upon. But intimate care is largely eliminated.

The stress of the pandemic on health care did nothing to help people with rare disease. If they were already on the journey to diagnosis for five years, then the confusion of the past 18 months made it even harder to find the right doctors, receive a diagnosis, and start treatment.

But, based on my experiences of working alongside the people with rare conditions, they were all-too familiar with these challenges. They have been battle-tested for years. And that is why I want to offer something for you from the rare-disease trenches.

Everyone could take a lesson in how to deal with uncertainty from people with rare conditions

A lot of people describe our current pandemic as “unprecedented,” because it is new to them.

However, essentially, what the pandemic exposed is a brief glimpse into the deep level of uncertainty that people with rare conditions have been experiencing their whole lives. I have seen this first-hand in my family — the stages of dread, acceptance, fatigue, and fight. Most of us who do not have a rare condition only had a small notion of these. But the pandemic made those feelings real.

In the world of rare disease, there are some of us who have taken the bold position of being truly patient first. You can hear from some of us on our Rare Voices podcast. Long before this pandemic, we were going into that uncertainty alongside people and families with rare conditions.

While we could not always provide quick answers, we found that there was something even more important, a place to call home.

Think about it: What is it that you most need when you feel unsure, over-burdened, or confused. Of course, you want to find some answers, but, really, what you want is someone who will seek to understand you and the unique challenge you face. We have found, in our decades of work, that even the smallest amount of empathy, curiosity, and understanding can have life-changing benefits for people with rare conditions.

It was true before the pandemic, and it is still true during the pandemic. It will be true in the future.

Your challenge: Be the home for people dealing with uncertainty

And it is amid even more uncertainty in health care that I want to offer you a challenge: Be a place that patients can call home. Take a lesson from the people who have had to walk the walk of the unknown and frustrating for years, and be a truly patient-first, flexible, and empathetic home for people.?

What does that look like? Well, it starts by not being first concerned with profits, shareholders, or margins. Profits are a natural outcome (even in the middle of a pandemic) of a solid, patient-first strategy.

People living with rare diseases must always battle for answers. While the pandemic made this process an even more lengthy and difficult one, what we now see is that when a care plan is built around the person and it’s truly patient-first, it is pandemic proof.