Epilepsy Talk

How much is epilepsy costing YOU? | November 25, 2023

Here’s a look at how epilepsy can affect your pocketbook. And why it’s called an “orphan disease”.

$9.6 billion

Annual epilepsy-related expenses in the U.S., including medical expenditures and informal care. (Source: Epilepsia, the journal of the international league Against epilepsy, 2009)

$1,800

Average cost per day for U.S. hospital admission of a person with epilepsy/convulsion. (Source: Healthcare cost and utilization project, 2008)

$707

Average cost of an emergency department visit. (Source: Agency for healthcare research and Quality, 2007)

$317,000

Average lifetime wages lost by men who continue to have seizures. (Source: Epilepsia, 2000)

$140,000

Average lifetime wages lost by women who continue to have seizures. (Source: Epilepsia, 2000)

86%

Increase in hospitalization among people with epilepsy who do not take medication regularly. (Source: American Academy of neurology, 2008)

$33,006

Average annual cost incurred by people with epilepsy who made frequent ER visits due to uncontrolled seizures. Patients whose seizures were controlled spent 80% less per year. (Source: ucb, inc., 2010)

As many as 44% of the people in the U.S. who have epilepsy — more than 1 million people — continue to have seizures, despite getting medical treatment, according to a report in the journal Epilepsia.

These people, and others who have uncontrolled epilepsy, contribute disproportionately to the cost of treating the chronic disease, say researchers who found that patients with poor seizure control represented 25% of all cases, but accounted for up to 86% of all costs.

The annual cost of the estimated 2.3 million cases of epilepsy was projected to be $12.5 billion, with anti-epilepsy drugs accounting for 30% of direct medical costs.

Indirect costs, such as lost earnings and lost productivity, accounted for 85% of total costs and were significantly higher than 1975 estimates suggested, researchers say.

The cost of medications alone every month is between $1,000 and $3,000 (and sometimes more).

The financial costs of epilepsy don’t end with medications – there’s a wide range of possible other costs, including travel to see specialists, buying safety equipment and communication devices, and funding a specific diet.

Sadly, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for Multiple Sclerosis).

In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.

Pharmaceutical investment in epilepsy is less than for Alzheimer’s and Parkinson’s, and it’s expected to decline further over the next several years.

The government invests $140-160 million in epilepsy research, but per patient, contributes less to epilepsy than it does to other major neurological disorders.

Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40-50 per patient from nonprofits.

No wonder they call epilepsy “The orphan disease.”

To subscribe to Epilepsy Talk and get the latest articles, simply go to the bottom box on the right, enter your email address and click on “Follow”.

Resources:

http://www.newsweek.com/epilepsy-overlooked-and-underfunded-77467

https://www.who.int/news-room/fact-sheets/detail/epilepsy

https://www.healthline.com/health/epilepsy/facts-statistics-infographic

https://www.cdc.gov/epilepsy/data/index.html

---