NCCIH Research Blog

The National Center for Complementary and Integrative Health (NCCIH) and the National Heart, Lung, and Blood Institute will lead a virtual, trans–National Institutes of Health (NIH) workshop on July 21–22, 2021, on “Approaches to Effective Therapeutic Management of Pain for People With Sickle Cell Disease.” If you’re a scientist in the field, a researcher who is currently outside the sickle cell disease (SCD) field but interested in the topic, a health care provider, or an interested member of the public, we invite you to attend. Registration is required, and there is no charge. This workshop will be livestreamed and archived.

SCD is the most common inherited blood disorder in the United States. It primarily affects individuals who are of African descent and self-identify as Black, or who are of Hispanic ethnicity.

What is SCD? The red blood cells of healthy people are round and move through small blood vessels smoothly to carry oxygen to all parts of the body. But an SCD patient’s red blood cells become hard and sticky and are crescent shaped (like a sickle). These cells die early, causing a constant shortage of red blood cells, and when they travel through small blood vessels, they get stuck and clog blood flow. This can cause acute pain episodes in addition to chronic, persistent pain, as well as other health problems such as stroke, eye problems, and infections.

SCD pain is debilitating and contributes to high rates of hospitalizations, emergency room visits, poor functional and psychosocial outcomes, and mortality. Managing this pain is complex, with unique challenges such as negative impact of stigma and racism and some limitations and risks of conventional medicine treatments. Furthermore, residual chronic pain has been reported in patients cured of SCD. Several recent, major reports have described SCD as a health disparity condition and called for equitable treatment (e.g., of pain) to improve patients’ overall well-being and quality of life.

The workshop focuses on acute and chronic SCD pain and is designed to:

• Discuss the current state of science in acute and chronic SCD pain as well as identify critical knowledge gaps and research challenges (Day 1)
• Brainstorm challenges and opportunities for optimizing management of this understudied pain condition in an underserved population (Day 2)

Effective, safe, multicomponent, and whole person treatments within a biopsychosocial context (i.e., blends biological, psychological, and social factors) is one example of an area to be explored.

Other NIH collaborators include the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institute on Drug Abuse, National Institute on Minority Health and Health Disparities, National Institute of Neurological Disorders and Stroke, and National Institute of Nursing Research.

The agenda, located on the event webpage, includes many expert presentations, panel and roundtable discussions, and patient perspectives. We thank you for helping to spread the word, and we hope you can attend.