09/05/2025
LET'S NOT WASTE TIME AND MONEY STUDYING PAIN
You’ve probably never heard of the NIH Office of Pain Planning and Policy. It sounds like an ivory tower. But it’s a workhorse. Just 2 dozen people direct and coordinate all research to tackle chronic pain at the NIH and NIH-funded programs at universities, hospitals and labs across the country.
They study pain, what causes it, how to diagnose and treat it. They work to help people with pain-related addiction. They fund studies of rare pain conditions that don’t interest Big Pharma - like rare forms of pain in children we’re only now recognizing are very real.
They bring scientists and doctors together from every corner of our country and the world to share their work. All this is to help at least 50 million Americans who suffer from chronic pain to get better care and lead fuller lives.
In recent weeks, while our attention was on more sensational news, OPPP quietly vanished.
With it go the hopes and dreams of the 47,996 members of the neurofibromatosis community who represent 145,000 fellow citizens diagnosed with the disease. The really scary thing is that improved diagnosis aided by OPPP is revealing even more young children with "non-specific" pain may have this disease.
Neurofibromatosis is a genetic disorder that causes tumors to grow on nerves throughout the body. Yup. It’s excruciatingly painful. Kids are diagnosed with type 1 at around age 8 and late teens to early 20s for type 2. People with type 2 usually die by age 54. That’s a long time to live without effective treatment and nobody in your corner.
Parents give up jobs to provide constant in-home care. Siblings go without. They watch every single day as a child in their midst suffers from pain, developmental disabilities, skeletomuscular deformities and worse. Neurofibromatosis doesn't just take one life. It crushes whole families.
That’s just one type of chronic pain that the OPPP helped fight. Until now.
This news should concern not only researchers and healthcare professionals but also ​every American and resident of North Carolina | Opinion
