Pharmacist in Charge, General Manager of Operations
From crisis comes opportunity—if the healthcare industry is ready to rally together and act now.
During the height of the pandemic, the U.S. Department of Health and Human Services (HHS) broadened the availability of telehealth services to help ensure patients could remotely and safely receive medical care. Telehealth—also called telemedicine—isn’t new. Connecting doctors and patients by video or phone conference has been a growing trend for years.
But COVID-19 accelerated its use, as HHS issued emergency declaration blanket waivers that empower healthcare providers to offer telehealth services more broadly to Medicare and Medicaid patients. For example, physicians can now bill for telehealth visits as if conducted in person and serve patients across state lines.
Doctors and patients who have used telehealth have been happy with the results. Patients like the convenience and easy access to care. And physicians appreciate the efficiency in diagnosis and treatment. Most of all, they’ve seen it as an important tool to promote compliance during a pandemic.
But there’s a problem: the emergency statues were created as a temporary measure to address a public health crisis, not improve care long-term. For that, we need the blanket waivers to become permanent.
Why telehealth matters for those with rare and orphan diseases
Imagine you’re a patient living in Utah and the only physician who specializes in your rare disease is more than 2,000 miles away in Massachusetts. Because you’re immunocompromised, the last thing you want to do is board a plane during a pandemic. Thanks to the emergency waivers, it’s not a problem; you simply connect with your physician via your computer at home.
But what happens as COVID-19 begins to subside and the waivers are no longer in effect? You’re still thousands of miles away from the only physician who understands your condition. Maybe you’re still uncomfortable boarding a plane. Or it’s too costly to fly or you’re homebound due to your illness. If you can’t see your physician virtually or in person, perhaps you don’t receive the care you need. You miss the follow-up visit that’s essential for adjusting your medication—and your quality of life suffers as a result.
This scenario will unfold far too often if we don’t act now.
The role of telehealth in rare disease going forward
In our experience, patients prefer having a choice in how they communicate with their doctors and pharmacists. Many patients who have relied on telehealth during the pandemic may want to continue using it longer after. Why deny them that option?
At Optime Care, we see telehealth as one more tool in our patient-first approach to serving those with rare and orphan conditions. It’s an appropriate use of technology for some patients to connect one-on-one with healthcare providers (unlike the impersonal, automated calls many specialty pharmacies use for refill reminders and other communications).
As the therapies for rare and orphan diseases become more complex, telehealth may serve another critical role as well: education. For example, patients who have never injected themselves could learn how from the convenience of their home computer.
Telehealth is still in the early stages of adoption, and it isn’t for everyone. But that’s the point: there are no one-size-fits-all answers for patients with rare and orphan conditions. For those who want to use telehealth, why shouldn’t they?
What you can do to help telehealth become a permanent option
Right now, the National Organization for Rare Disorders (NORD) and other groups are advocating for legislation that would make the emergency waivers permanent. Learn more about NORD and their policy work here.
If you have had a telehealth experience, share it with NORD to help guide future advocacy efforts.