Sponsored: The National Institutes of Health Initiative Advancing Research on Chronic Pain
By National Institutes of Health
New treatment options are on the horizon for pain associated with sickle cell disease
At least 100,000 people in the United States live with sickle cell disease, a genetic condition that causes red blood cells to take on a crescent, or sickle, shape.
Due to their shape, sickled cells can clump together, clog small blood vessels, and trigger severe, acute pain episodes. Sickle cell disease affects so much more than red blood cells; it impacts a person’s entire life. Many people experience debilitating pain, anxiety, depression, exhaustion, and social isolation. Sickle cell disease can disrupt people’s ability to work, care for their families, do things they enjoy, and can be physically, mentally, and emotionally draining.
Research shows that current therapies to relieve pain are inadequate. Opioids are often used to manage severe pain, but there are instances where these medications don’t effectively manage pain associated with sickle cell disease. Among those who report chronic pain, almost two-thirds still experience it a year later.
“We need more tools, more options in our toolbox so that for each patient, we can find the one that works best,” says Ardith Z. Doorenbos, Ph.D., R.N., a researcher at the University of Illinois, Chicago, whose research study is focused on improving pain management for people with diverse underlying conditions.
The path to better pain solutions: The NIH HEAL Initiative’s commitment to pain research
The National Institutes of Health (NIH) is working with scientists nationwide to develop safer, more effective treatments for pain and innovative, personalized approaches to care. The nationwide effort is called the NIH HEAL Initiative®—or HEAL—and it is dedicated to finding effective, nonaddictive solutions for managing pain.
“If you are living with chronic pain, you should know there is hope,” says William Renthal, M.D., Ph.D., a HEAL-funded researcher, in an interview with HEAL staff. “There’s a lot of people like me . . . working hard to develop better treatments than we have today.”
Researchers are studying genes, cells, and tissues to find new targets for treating pain and developing personalized approaches that go beyond a one-size-fits-all treatment for pain relief.
Integrative therapies for sickle cell pain
Researchers are looking for ways to help reduce the pain and stress of sickle cell disease. For example, a clinical trial that’s part of the NIH HEAL Initiative will test whether people with sickle cell disease benefit from two types of integrative medicine: acupuncture, a traditional Chinese therapy in which very thin needles are inserted in areas of the body that are believed to aid the flow of energy, and guided relaxation, which focuses the mind and senses on a place where people feel safe, peaceful, and calm.
Another approach to treating severe pain, including that caused by acute pain episodes, is trying to determine whether a device that releases highly focused and targeted ultrasound waves at specific brain regions can relieve pain. Using mouse models, scientists are directing ultrasound waves at particular areas of the brain that are part of pain-related brain systems. Early results are promising in reducing animal sensitivity to pain, but before the device can be tried in humans, the results need to be repeated in larger animals to make sure the technology is safe. This research aims to develop a lightweight device that people can wear to deliver focused ultrasound for about 10 to 20 minutes every day.
Cognitive behavioral therapy and chronic pain
Cognitive behavioral therapy is a proven strategy for improving chronic pain that works by helping people develop skills to cope with the stress, frustration, anger, and sadness of living with chronic pain. For example, people learn how to use relaxation exercises to relieve muscle tension that can worsen pain and manage the understandable worries and stressful thoughts that often pop up when living with a chronic health condition.
Early research suggests that some adults with sickle cell disease experience less pain and stress if they receive cognitive behavioral therapy through a digital app. Charles R. Jonassaint, Ph.D., and researchers at the University of Pittsburgh are leading a HEAL-funded clinical trial focusing on teens and young adults to learn whether an app can effectively provide cognitive behavioral therapy. The study also includes virtual peer support from other people living with pain.
“I’ve heard this again and again,” Jonassaint says, adding that people tell him, “‘We would much rather have somebody that looks like us and has been through a similar experience.’”
HEAL-funded researchers, like Jonassaint, are committed to discovering better ways to manage chronic pain. They are working toward a future in which people with sickle cell disease have multiple safe and effective options for long-term pain relief.