In rare disease, the impact of a pandemic is profound

By Eric Cale
Vice President
SCOUT Health

Charles Rosenberg, a historian of medicine and science, observed that viral outbreaks often unfold like a play in three acts. Act 1 is to ignore the mounting threat until it can’t be avoided. Act 2 is a call to arms (citizens demanding an explanation). And Act 3 – the one we are in now – is the response.

Act 3, according to Rosenberg, can be “as disruptive as the disease itself.” The potential disruptions from Act 3 of COVID-19 have significant short- and long-term implications. Our proactive responsiveness to those disruptions can help drive success.

At SCOUT Health, we understand the importance of connecting patients in need to the treatments that will make them better. To achieve that, we are focused on analyzing and understanding these implications as they pertain to the health and treatment of rare disease patients and caregivers. A shift in how patients experience healthcare caused by strained resources within the system, the impact of a protracted economic recession, and planning for a multi-wave pandemic, are central to that analysis.

Changes to an already strained system

Before the global pandemic began, the U.S. healthcare system was already stretched thin. There were fewer doctors and hospital beds per capita than most developed countries. In 2018, 51 percent of patients spent less than 16 minutes with their primary care physician at each visit. The average wait time to see a neurologist and cardiologist, for example, was no less than 30 days and 18 days respectively (according to a 2016 study by Athena Health).

Thomas Lee, MD, recently observed in the New England Journal of Medicine that, once COVID-19 got a foothold in the United States, the first thing physicians did was cancel unnecessary appointments to avoid propagating infection and to create bandwidth in their facilities. This highly selective patient consultation process, born of necessity, began being repeated around the country. The question then became, “Should this be a model for the future of healthcare?” Where today it is difficult for patients to see a physician, let alone spend enough time with one to optimize outcomes, this disruption could create a much more refined approach that is focused on ensuring precious resources are used on real patient problems.

A highly streamlined patient/provider experience would impact the path to diagnosis, treatment, and long-term disease management. While over the long term this is probably not an issue of healthcare rationing (as we have seen in this acute phase), it is one of performance focus.

We have seen similar disruption arise from other recent crises. Financial Technology (FinTech) has been around for ages, but FinTech 3.0 changed traditional banking forever following the 2008 financial crisis. Perpetuated by a generational mistrust of the banking system, customers started to look beyond big banks for their everyday needs. FinTech companies ultimately were successful based on three key factors: 1) they focused on customer experiences (intuitive user interface, simplification of complex processes), 2) they solved specific user problems (the consolidation of activities along the transaction model), and 3) they leveraged technology as a competitive moat (oftentimes, this coming down to data analytics and utilization).

The factors that influenced FinTech 3.0 are relevant to healthcare because they helped renew trust in a stressed system and improved engagement by minimizing the barriers to utilization for users. The need for this same approach in healthcare was dire even before the pandemic, and COVID-19 has brought it to the forefront for patients, industry, and innovators alike. To address these three critical success factors, there are some key moves brands can make today, and in the long term, to be positioned for success (see figure 1).

Responding to the economic impact

The threat of a protracted negative economic impact from COVID-19 is significant, with major GDP declines predicted beyond 2020, along with unprecedented unemployment (the latter has already become apparent). Unfortunately, this will have a disproportionate impact on rare and chronic patients in the healthcare system.

Nearly 30 million rare disease patients live in the United States. A majority of these patients are pediatric and/or require a caregiver’s involvement. According to the National Alliance for Caregiving, nine out of every 10 rare disease families face financial hardship. Before COVID-19 hit, it was estimated that 140MM Americans could not afford a $400 medical emergency. Sadly, many families could be forced to significantly cut spending, clear out savings, or even file for bankruptcy, and that can have a lasting impact on their ability to find effective disease treatment.

The financial hardships faced by families impacted by rare and chronic disease cannot be underestimated for their effects on patients, families, treatment success, and long-term patient engagement.

In times of financial hardship, studies have shown that adherence to treatment wanes significantly. Patients may cut a dose in half, take treatment vacations, seek alternative methods to acquire a treatment, switch to a cheaper option (generic or a different molecule), or stop treatment altogether. But continuous treatment of chronic disease can be imperative to improving long-term outcomes (and some small studies suggest this could be important in managing some COVID-19 risk, specifically).

Early prescription trends suggest reduced abandonment, increased demand, and increased copay assistance utilization in Q1 2020. While these may seem like unalarming trends, this behavior could simply reflect the behavioral stockpiling and will likely shift into negative behavior without intervention. Copay relief tends to increase during Q1 and Q3 during insurance reset periods and should be considered an early indicator of economic hardship. As is often the case, these trends will be magnified within the rare disease community.

As the economic pressure also impacts payors and providers alike, we may see a shift to value-based care driven by lower costs and improved outcomes over the long term. That will elevate the need for clinical experience drivers and tools that create ease of communication between families and physicians.

Planning for the long road ahead

In this pandemic, the two greatest economic influencers are the progression of the disease itself through the global population and the corresponding economic stimulus. Both factors have already had a clear impact on the healthcare system; from delays in clinical trials, to physician office closings, to forecasted changes in insurance coverage for 2021. The world is already seeing second waves of COVID-19 in some Asian countries such as Hong Kong, and emerging community spread in the southern hemisphere, suggesting a likelihood for multiple peaks and a potential for a permanent endemic presence. Forecasts show that at least one in two Americans will contract the virus.

With this level of impact and strain on the healthcare system, patients with rare and chronic diseases will increasingly look to new sources of stability. Families with rare and chronic diseases are constantly overwhelmed navigating the firehose of information. They seek sources they can trust, that provide value, and that offer stability. The following are three steps to consider to be a steady, trusted resource of the long-term:

1) COMMUNICATE KEY LEARNINGS TO PATIENTS AND PROVIDERS in order to establish trust and responsiveness should further disruption occur
2) DEVELOP RAPID RESPONSE CONTENT FOR NOW AND THE FUTURE that can be distributed through social, paid, and owned channels. That content should include how families dealing with COVID 19 can manage the situation
3) IMPLEMENT A RISK MITIGATION STRATEGY that allows your brand to assess and respond to new developments quickly and with effectiveness. Specifically, that mitigation strategy should address various levels of decision risks, how to reach a final decision, and expected timing at each level.

Many complicated factors must be considered during these trying times. Pharmaceutical companies face unprecedented supply chain, access, and coverage challenges. Patients and families are scared as they stare down managing their conditions in extreme economic and social conditions. And marketers must quickly adapt to the changes in expectations in the healthcare system.

By keeping both a short and long-term view of these challenges, maintaining a steady hand, and reacting to threats and opportunities quickly, brands can bring new value to the healthcare system and drive great success over the long term.