Written by Ashley S. Hattle, as originally posted on her blog.
If you’ve been diagnosed with chronic or episodic cluster headaches, you’ve undoubtedly heard that it’s a “rare” condition. But, is it? Approximately one in a thousand have cluster headaches, and that number could be higher considering the rate of misdiagnosis in the patient community. A disease is typically considered rare when it affects less than one in 2,000 people in Europe or fewer than 200,000 in the United States. The estimated U.S. population is nearly 326.6 million people according to the US Census Bureau, which means about 326,500 Americans live with cluster headaches. Not such a rare disease, eh?
While cluster headaches affect more than 200,000 people, they can still qualify for The Orphan Drug Designation program because drug and device manufacturers are less likely to recover the cost of developing a treatment. However, the qualifying criteria are so vague and complicated that very few drugs have been included in the FDA program and discounts that come with it. Additionally, Cluster Headache is listed as a rare condition by NORD (National Organization for Rare Disorders), but not uncommon enough to warrant NIH funding under the Rare Disease Clinical Research Network.
The Problem with the Word “Rare”
When we call this brain disorder “rare,” we minimize the impact it has on patients, their loved ones, and their quality of life. We also minimize the financial strains it places on everyone involved—Drug and treatment manufacturers, insurance providers, and out-of-pocket patient expenses. Patients often spend thousands of their hard-earned income on high-flow oxygen therapy alone because Medicare/Medicaid (and therefore private insurance companies) refuses to cover the cost. If this disease is so rare, why is the number one treatment banned from coverage? The actual cost is minimal when compared to sumatriptan injections and other abortive or preventive medications.
There are several conditions that you’ve probably heard of and don’t consider rare, but in actuality, these disorders affect the same (.1%) or fewer percentage of Americans as cluster headaches:
- Multiple Sclerosis (.1-.2%)
- Autism Spectrum Disorder (.146%)
- Down Syndrome (.1% or less than)
- Narcolepsy (.074%)
- Sudden Infant Death Syndrome or SIDS (.05%)
Some well-known diseases affect a smaller percentage of the population such as cystic fibrosis, which impacts around 30,000 Americans and ALS (Lou Gehrig’s Disease), which impacts just 6,000 Americans.
There are more than 7,000 conditions on the Rare Disease List, most of which are genetic, but the prevalence of each disease varies. According to Global Genes®, 80 percent of those with a rare disease are affected by just 350 of the 7,000 conditions on the list.
How Many People have Rare Diseases?
Approximately 30 million or 10 percent of the U.S. population has some form of a rare disease. Maybe they have cluster headaches or MS, or maybe they have Vampire Syndrome (Xeroderma Pigmentosum), which affects one in a million in the United States and one in 22,000 in Japan.
Cluster headaches are less common than migraine and tension-type headache. They’re less common than most forms of head pain. Technically, these bouts of extreme, ice pick-type pain are rare, but they’re one of the most common of the rare diseases.
Learn more about rare disease statistics.
Member of the Board of Directors at Clusterbusters—Nonprofit organization for cluster headaches
Medical content and fiction writer
P.S. There are organizations such as Rare Patient Voice that specialize in raising awareness for less common conditions and connect patients with current research and surveys regarding their disease. I encourage anyone with cluster headaches to check out their website. If you sign up and list Clusterbusters as your referral, they’ll donate $5 to the organization.