Caring in the time of COVID4 Critical Success Factors for Manufacturers

Before I became president and CEO of Optime Care, I worked for a pharmaceutical company that served patients with alpha-1 antitrypsin deficiency, an inherited condition that can lead to serious lung and liver disease. While in my role I quickly discovered how complicated it can be to manage therapies for rare and orphan disorders like Alpha-1

I realized how a critical part of my job was to inspire physicians to focus on early detection, awareness and education. And I saw, first-hand, how my efforts were working. For example—after educating physicians on the importance of testing for Alpha 1—I would often see a spike in patients being tested and potentially testing positive over the next few weeks.

The lesson learned from my experience is that manufacturers can take an important lead in promoting early detection, education, and awareness in order to help guide the appropriate treatment of rare and orphan conditions. Today this responsibility is under threat due to the COVID-19 pandemic. Since physicians have been operationally disrupted and stressed, it has become increasingly difficult to encourage continued education and detection for rare and orphan disorders. Because most of these conditions are chronic—not acute—maintaining focus on them has always been hard. Now, the challenge is greater than ever.

But, it’s not insurmountable. I asked two colleagues from manufacturing companies for insight on their best practices to help keep physicians focused on testing for rare and orphan disorders — even during a pandemic

Bill Jollie is an account executive serving rare patient populations at a global pharmaceutical company. Tommy Fisher is a pulmonary sales specialty representative for another global manufacturer. Both agree there are four best practices that can help keep physicians focused: awareness, detection, education and advocacy.


With more than 4,000 rare and orphan disease states, it’s virtually impossible for a physician to know and actively monitor all of them. Some of these conditions can be a matter of life or death, making early detection critical so patients can make the appropriate lifestyle changes and begin therapy. Traditionally a challenge, raising awareness is even more difficult during the pandemic, as physicians turn their attention more to the urgent needs of COVID-19 patients. But, Fisher and Jollie are finding ways to overcome this barrier and continue to promote awareness of rare and orphan disorders.

The first step is for manufacturers to understand the very nature of raising awareness. “It’s essentially about maintaining presence of mind,” Fisher said. Are physicians still thinking about these conditions, despite the mounting pressures of the pandemic? If not, a physician can easily hold on to a preconceived idea of a rare or orphan disease and not stay abreast of the latest developments regarding prevalence, diagnostic protocols and treatment options.

Manufacturers can help physicians maintain presence of mind by: 1) being a resource for the latest developments in rare and orphan disorders and 2) reminding physicians that they may have patients with these conditions, but are undetected. Then, provide resources to help physicians more easily identify patients at risk. (In the next section, we’ll discuss these resources in more detail.)

Above all, awareness is about keeping patient needs first. “While a physician may not see a rare or orphan condition every day, patients and their families live with it. It’s a matter of focus, which is particularly important as COVID can shift attention away from these patients,” Fisher said.

“To raise awareness in the broader patient community, you have to lean on your advocacy partners,” Jollie added. “Provide resources to help them focus on awareness, such as using social media to promote events or messages such as ‘October is XYZ Awareness Month.’”


“Early detection can quite literally save lives. Even in pre-COVID times, this was a challenge,” Jollie said. Indeed, it can take an average of five to seven years and three to five different physicians to arrive at a correct diagnosis for a rare or orphan condition.

Why does it take so long? “Doctors aren’t trained to spot the zebra,” he said. “They recognize what they’re accustomed to seeing every day. In the case of a rare or orphan disorder, they may think it’s something more familiar.”

Pandemic or not, physicians don’t have the time or resources to test every patient for everything. But the pandemic exacerbates the time pressures on physicians: “chronic conditions generally aren’t as great of a priority right now,” Jollie said.

That’s why it’s so important to focus diagnostic efforts, instead of taking a shotgun approach. “Rather than testing everyone for a rare condition like Alpha-1, just test patients who have COPD. In other words, focus on the narrow segment of patients who have the greatest likelihood of having the disorder.”

Manufacturers can provide the knowledge and resources to help drive this focus. One solution Jollie is implementing right now involves the physician’s EMR system. “No doctor can remember 4,000 disease states, but an EMR can,” he said. When a doctor enters symptoms or ICD codes into the system, it can flag a particular disorder, so the patient can be tested for it. “This is about systematizing detection and making it easier for physicians to identify patients with rare and orphan disorders.”

Jollie was taking this approach prior to the pandemic, but it is now more essential than ever. “This is one of the most important ways I spend my time now,” he said. Jollie explained that pharmaceutical representatives today have to be much smarter about how they spend their time. “We can’t afford to be inefficient and must focus on how we can be of the greatest value in meeting a doctor’s goals.”

Fisher added, “As with awareness, detection is about presence of mind.” There have always been ways to detect, but they have improved and are easier for patients to ask for and physicians to use. The key is staying abreast of what’s new.


An important role of education is dispelling misconceptions about rare and orphan diseases. As you overcome them, you’re better able to truly define who should be tested. As an example, consider American Thoracic Society guidelines that state a physician should screen COPD patients for Alpha-1, regardless of age or smoking history. If providers aren’t doing that, it’s a misconception that can be overcome via education.

The goal is to acknowledge that these disorders aren’t something a provider sees every day, but they’re critically important to detect.

“A physician may believe, ‘I don’t have any of those patients in my practice.’ The reality is you don’t know if you don’t test,” Jollie said. That’s why education is so important: because time is their most prized resource, you have to show physicians how a focused approach to testing can help them treat the ‘whole patient’—in other words, not just for COVID-related conditions, but also for the potential of rare and orphan disorders.

Again, it’s important to acknowledge how busy physicians are, particularly during the pandemic. “When you show your respect for a physician’s time, you will be in a better position to gain access to continue your awareness and education efforts,” Fisher said.

Do awareness and education really work? As an example, consider the impact those efforts have made on the COVID-19 pandemic, as people began to socially distance and wear masks in public. “This is what’s possible when manufacturers, providers, pharmacy benefit managers and patients all come together to educate one another in the spirit of quality outcomes,” he added.


There are two approaches to consider: a community advocating on behalf of all patients with a particular disorder and patients advocating for themselves.

Jollie explained the value of the second approach. “There’s a high likelihood that a patient’s primary physician knows little if anything about a particular rare or orphan disorder. While specialists may have learned about a condition in medical school, they may have never seen much less treated an affected patient.” So it’s important that the patient advocate for him or herself, taking control and learning as much about the disorder as possible—and then imparting that knowledge to the physician. “The more patients advocate for themselves, the more successful their outcomes can be,” Jollie said.

Fisher agrees. “When patients advocate for themselves, they can have higher level conversations with their physicians, which increases awareness and promotes early detection. These doctors can then share this newfound knowledge with peers, to further promote visibility.”

Patient advocacy groups are also key to success but are under growing pressure during the pandemic. “Advocacy groups survive on donations; in the virtual environment created by COVID-19, fund raising is infinitely harder to do,” Jollie said.

Pharmaceutical companies can play an important role in providing resources to the advocacy community, to promote awareness among patients and their families, other caregivers and providers. For example, manufacturers can offer grants and assist with marketing strategy.

The patient-first foundation

“Especially during the pandemic, the manufacturers that succeed are those who keep the patient at the center of every single thing they do,” Jollie said. “A lot of providers, nurses and pharmacists have huge hearts for their patient communities and give tirelessly of their time at fundraisers, education events and other activities. Manufacturers need to be visible in the community as well—and be creative about providing support. The closer employees feel to the patient community, the harder and smarter they’ll work to serve these patients both now and long after the pandemic subsides.”

The key is to never stop communicating. Keep seeing providers and patients virtually. Continue raising awareness and improving education in support of early detection. Despite the pandemic, these are real patients and families dealing with rare and orphan diseases. “It’s a day-to-day commitment and a team effort to stay focused. What does that better than patient-centric care?” Fisher said.

To learn more, download our white paper, “How to create a patient-first strategy.” Or contact me directly at or call 888-287-2017.