The Cost of Epilepsy - On All Levels

There are many aspects of a medical condition, and epilepsy is no different. One aspect that people are hesitant to discuss is the financial impact of epilepsy. But in a world where money is at the center of everything, I feel like it’s something that needs to be talked about and that’s what we’ll be doing today.

And I want to not only dive into how much money a person who has epilepsy would be paying to treat it, but also how much the pharmaceutical industry makes from selling epilepsy treatments, and the amount of money being put into epilepsy research. Basically, I want to look at the financial impact on all ends and sides of the spectrum.

Cost of Treatment For Individuals -

Many would consider the basic level of epilepsy cost to be the cost to the individual paying for their treatment. That also happens to be the statistic that I’m most familiar with because I’ve been a mother paying for her child’s care for many years now.

Of course, costs vary from person to person. And there can be many different variables that will change how much a person has to pay for their treatment. For instance, things like location, the type of epilepsy, the level of seizure control, and much more can change the amount the person has to pay.

But regardless, a study showed that the amount of money an individual with epilepsy pays per year for healthcare can range from about $10,000 to $48,000 per year. And the amount of money paid specifically for epilepsy treatment ranged from about $1,000 to $20,000.

If you take into consideration that different people have different incomes, then you can see how prices like that could seriously affect a low-income household.

It’s also important to note that in middle or low income countries, sometimes the average person can’t afford medical care at all. Meaning that they have completely untreated epilepsy purely because they can’t afford the cost of adequate medical care. This is such a huge problem, and I hope that someday every person can have access to the health care that they need.

Possible Additional Expenses -

Another thing to keep in mind when you’re calculating someone’s medical expenses is that there are things that come up in anyone’s life that cost unexpected amounts of money.

For people with epilepsy, this might mean they have a seizure which requires them to make an emergency hospital visit, they might need extra testing especially during the diagnosis process but it’s possible during any time, or they might decide to undergo different types of treatments than just medicine.

Plus, epilepsy can sometimes require extra money to be spent in non-medical areas. For instance, they might have to pay for transportation services if they’re unable to drive, etc.

The Cost of Researching Epilepsy - 

Now, it’s pretty hard to find an exact number when you’re looking at something on this large of a scale. And since money used on epilepsy research is donated from so many different sources, it’s even harder to catch up on.

But during my research I did find out that The National Institutes of Health (NIH) are the largest contributors to epilepsy research, they invest over $150 million dollars every year! This makes them responsible for about 80% of epilepsy research aside from industry sources.

Unfortunately, although that amount may seem like a lot. In all reality, very little money gets put towards epilepsy research per year compared to other medical issues. The NIH for example, spends more than $30 billion dollars every year on medical research. When you think about how much of that is spent on epilepsy, it’s a small percentage.

Making Money From Epilepsy -

As much money is spent on epilepsy treatments per year, that money has to go somewhere right? It does, the pharmaceutical industry makes a lot of money from selling epilepsy treatments. And through doing a little digging, I found out some numbers that might put the amount into perspective.

I found out that from 2010 to 2018 name-brand epilepsy drug prices have risen by 277%! That’s a massive amount, and if they’ve already risen that much then who knows how much more they’ll raise in the future. Note, this study is now a few years old. But the prices remain quite high.

Because of these high prices, the only reasonable alternative option for many people with epilepsy is to get the generic brands instead.

Here are just a few of the most popular anti-seizure drugs and their prices versus their generic counterparts if they have them. This info was gathered from a Healthline article. I won’t mention every drug here, but you can check out their full article if you’d like.

Depakote costs $579.50 for ninety 500mg tablets. And its generic alternative is $16.77 for ninety 250mg tablets.

Valium $321.37 for sixty 5mg tablets. Its generic version is much less, only $9.17 for the same amount of medication.

Topamax costs $373.88 for sixty 25mg tablets. And its generic version is $9 for the same amount.

Lamictal costs $453.06 for thirty 100mg tablets. But if you purchase the generic version then you’re only looking at $8.30 for the same amount.

Keppra costs $487.95 for sixty 500mg tablets. And the generic alternative is only $9 for the same amount.

Thankfully the generic versions of name-brand drugs aren’t that much different and will treat a person with the same effectiveness. The only real difference between the two types lies with inactive ingredients like preservatives or flavorings.

But it is important to note that some epilepsy patients have noticed a decline in seizure control after they made the switch from brand name to generic. I plan to research that more in the future.

When Rach was first diagnosed we had an extremely hard time with all the cost. We didn't have health insurance at the time and it took me some time to pay all the medical bills off. Thankfully we were able to get health insurance shortly after that and it has helped. So I have a lot of empathy for people who can’t necessarily afford the treatment they need and as I mentioned earlier, I hope that someday everyone has access to good medical care.