How can we, as a community, raise awareness about hydrocephalus? We can begin by getting out the facts:
Hydrocephalus Is Common
- Hydrocephalus affects approximately 1 million Americans, in every stage of life, from infants to the elderly. It affects people in all walks of life, from every socioeconomic background.
- One out of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors.
- Hydrocephalus is the most common reason for brain surgery in children.
There Is No Cure
- There is no medical therapy to treat hydrocephalus. The only effective treatments are surgical.
- While many people are helped by surgery, many more need further operations to stay well. Of the nearly 40,000 hydrocephalus operations performed annually (one every 15 minutes), only 30% are the patient’s first surgery to treat hydrocephalus.
- The medical costs for hydrocephalus are over $2 billion per year, yet the National Institutes of Health (NIH) invests less than $8 million per year in hydrocephalus research.
There Is a Crisis in Diagnosis
- A recent study estimates that 700,000 older Americans are living with normal pressure hydrocephalus (NPH). This disorder often goes undiagnosed and untreated, with an estimate that up to 80% of cases remain unrecognized.
- Of the estimated 5.2 million individuals diagnosed with dementia, 5% are believed to actually have NPH, which is treatable.
- Accurately diagnosing adult hydrocephalus would save Medicare in excess of $184MM over five years.
- Hydrocephalus also goes undiagnosed and untreated in younger adults, leading to substantial workforce loss and health care costs.
There Is a Crisis in Access to Care
- Doctors are sometimes understandably reticent to take on complicated hydrocephalus cases, particularly in adults, because little is known about the disorder. We don’t always know what causes it, and we don’t yet know how to make these people well.
- There are fewer then ten centers in the U.S. specializing in treating adults with hydrocephalus.
More Effective Treatment Is Needed Now
- Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and no progress toward prevention or cure.
- Research is essential. At the very least, we need better treatments, with more positive long-term outcomes, and diagnostic tests that are accurate, cost-effective, and noninvasive.