More than 50 million US adults live with chronic pain and lately, they are not only trying to maintain control of their pain but they are also struggling to avoid the coronavirus. With many pain patients at higher risk of contracting the virus, or developing complications from it, this already vulnerable population is facing a series of new uphill battles, aimed at telemedicine coverage, open clinics, prescription refills, and more.
To see exactly how the pandemic is impacting pain care, the U.S. Pain Foundation went right to the source, surveying 664 individuals across the country living with chronic pain. Their findings, based on early April 2020 data, show that:
“Because of their risk factors, this population of patients must limit contact,” said CEO Nicole Hemmenway, in a press release. “But they also live with painful conditions that require consistent medical care in order for them to function. It’s a terrible catch-22.”
Remedy Health Media (RHM), publisher of Practical Pain Management and other digital health brands, also surveyed those living with chronic conditions, including autoimmune diseases, on how the COVID-19 outbreak is affecting them. Over 4,300 people responded to the late March 2020 survey. A few highlights:
Here, we dive into the crucial barriers these individuals are facing—and talk with Hemmenway further about what can be done. Plus, we offer a Take Action plan for those fighting pain and the pandemic (see infographics below).
While telemedicine is being touted as the most readily and perhaps best option for ongoing pain care, the U.S. Pain Foundation found that insurance is a major barrier:
● 25.3% of survey respondents said they had not been informed by anyone of their telemedicine options
● 56.1% said they did not understand their insurer’s telemedicine coverage policies.
The most common type of insurance was Medicare (46.6%), followed by private insurance through an employer or family member's employer, Medicaid, and private through a state health exchange.
Pain patients are also fighting insurance companies to get needed medication refills: 25.1% of respondents said despite the special circumstances, their insurer would not cover more than a 30-day supply; another 17.3% said their insurer would not fill a medication early.
Also alarming, U.S. Pain Foundation survey data showed that some pain clinics have remained open – 36% of survey respondents said their pain doctor’s office was open—sometimes requiring them to visit in person. “This is problematic given that many people living with chronic pain have comorbidities that put them in a high-risk category,” said Cindy Steinberg, U.S. Pain Foundation’s National Director of Policy and Advocacy in a foundation release. “The Drug Enforcement Administration issued an emergency ruling allowing controlled substances to be refilled via telehealth.” (More on how to access telemedicine and what insurance should be covering.)
On the other hand, 33.7% of respondents rely on appointments that require in-person interaction (such as physical therapy) that cannot be addressed virtually, leaving many patients to self-care.
With contracting the COVID-19 virus their chief concern, respondents’ second worry was “interruptions to regular pain care.” They shared longing for "help with handling added stress and anxiety" and "tips for managing pain from home.”
While 99.2% of respondents said they were either staying home “as much as possible” or “completely,” to avoid infection, the foundation concluded that “not enough is being done.”
Hemmenway shared a few tips on how people facing chronic pain conditions in light of unpredictable coronavirus challenges can manage.
For starters, “Patients shouldn’t feel as if they’re completely alone,” she said. “The first thing they should do is reach out to their provider to see if they’re offering appointments via telehealth. They should be sure to explain exactly how bad their pain levels are. If the pain is bad enough, the provider might make the decision to bring the patient into the office for treatment—for example, some doctors are still offering injections on a case-by-case basis.”
If that doesn’t work, think outside of the box. Said Hemmenway, “There are creative ways to remotely access even traditionally hands-on care. Take physical therapy. Even though you can’t get manual assistance, a PT might ask you to record yourself doing exercises and then give you feedback over email. It really depends on your individual provider, so it’s important to check with them directly.”
Finally, she advises, “If your pain cannot be managed over telehealth, then it may be a good time to work with your doctor to consider new treatment options that don’t require in-person visits, such as topical pain relievers, over-the-counter medications, wearable devices, and self-management strategies (eg, hot/cold therapy, proper sleep, gentle movement activities, and stress reduction). We all have things that we do at home to help reduce our pain. Even if these approaches only decrease pain a little bit when done individually, if used in combination, that can add up.”
See some sample self-care resources below
In terms of what steps people can take to reach out to their providers, and their insurance companies, Hemmenway offers the following advice.
“One thing to bear in mind is that everyone’s scrambling to adjust to our new reality. It might take your doctor a couple of days to respond to your emails or calls, and if you do require an in-person visit or treatment, it might take a little while to be scheduled. To avoid any emergency situations, make sure to not wait until the last minute to contact them about a refill or if your pain levels are getting really bad.
“Now more than ever, our ability to clearly communicate our pain verbally is extra important, since physical assessments aren’t always possible. So try to be clear and exact when talking about your pain levels with your providers and what the pain is limiting you from doing. If you just say the pain is bad, that’s not as helpful—'bad’ means different things to different people. But if you are specific and explain to your provider that your pain is so severe you can’t shop for groceries, they’re more likely to understand the extent of your situation and may have you come in for treatment.
“Similarly, if your pain is tolerable and you feel your doctor wants you to come in unnecessarily, make sure to clearly state that you are high-risk and explain your concerns. Ask them if there are any options for telehealth and/or what steps they’re taking to protect patients who come into the office. As with any medical service or treatment, patients should always check with their insurance to see if it is covered and what the out-of-pocket costs will be. Many insurers are covering telehealth at the same level that they do traditional appointments. But it’s important to double-check first.”
On the clinician side, practitioners are already feeling stretched more than usual. But they too are adapting by increasing telemedicine services and working across disciplines to weigh risks tied to the coronavirus. Offers Hemmenway, “Doctors and their clinics should be certain that they are proactively communicating to their patients whether or not they’re open, if they’re offering telehealth, and what, if any, in-person treatment options are still available. If the office is conducting in-person appointments, they should inform patients what infection control measures they are taking. Sharing this information upfront can help reduce confusion and eliminates the need for back-and-forth over basic logistics. A well-informed patient is also more likely to be interested in engaging in their care and trying out telehealth for the first time.”
Overall, says Hemmenway, “This is a very scary time for everyone, but the concerns are 10-fold for patients who believe they are high-risk.” It’s important, she added, to recognize these fears and work together for the safety and health of all. “There is some amazing technology at our fingertips…and I do hope we continue to offer telehealth long after the pandemic is over—it’s an important option for improving accessibility for people with pain who live in rural areas or have difficulty driving.”
COVID-19: The Action Plan Chronic Patients Need Now (view or download full infographic)
Live Q&As and webinars: Practical Pain Managementis hosting a live “House Calls” series that enables individuals to ask clinicians and patient advocates key questions in real time. Stream “How to Use Creativity to Cope” and “How Coronavirus is Affecting Pain Patients” - both on Facebook. The US Pain Foundation is growing a similar series, Building Your Toolbox.
Self-care strategies, including exercises and gadgets/devices you can use at home to manage flares, are available on PPM and USP.