Why is there a lack of research for epilepsy?

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By: Aliana Gordon

research for epilepsy
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With epilepsy being the fourth common neurological disorder, it seems evident that there should be adequate research to face the difficulties when dealing with epilepsy, but unfortunately, it is neglected. Being an unknown fact, epilepsy is the most common serious brain disorder worldwide according to the World Health Organization with 1 in 26 people developing epilepsy or seizures in their lifetime and having a lifetime devotion to being able to manage the effects (1)(2). Epilepsy develops from various causes; mostly head traumas, strokes, brain infections, and brain tumors (3). It can develop at any age, in any socioeconomic or racial group which is why there is a need for more research to occur to be able to properly provide treatment to all. But where is the support needed to help this prevailing disorder?

The National Institute of Health (NIH) is the main source of medical funding within the United States of America and estimates the prevalence and burden epilepsy causes to the nation rather than the individuals, dehumanizing the neurological disorder. The research and prevalence of epilepsy given by the NIH specific branch National Institute of Neurological Disorders and Strokes (NINDS) are substantially lower compared to six other neurological disorders: Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), multiple sclerosis, Parkinson disease, and stroke (4). ALS in comparison to epilepsy is being given 61.1 times more funding and stroke research is 1.7 times more; not implying there should be a decrease of funding, but there is room to improve the funding. The lack of accuracy the NIH uses to estimate the prevalence, alters the data given leading to inconsistencies, and inevitably disadvantaging the patient population. The evaluation for medical funding for epilepsy needs to be reevaluated to account for the actual prevalence of the neurological disorder in the daily lives of humanity and be viewed as an uncompromising concern in the global community.

Compared to the six other neurological disorders, epilepsy is more prevalent to develop in children as it is an adverse effect of other neurological or metabolic disorders consequently leading to a lifetime of various effects and increased mortality. The rise in population results in an increase in adults and children with epilepsy (5). The Centers for Disease Control director Brenda Fitzgerald acknowledges the rise in cases but there is still an insufficiency with regards to the grants for research that did not grow with the rise. A plausible reason could be that 2/3 of those with seizures are able to control it by anticonvulsant medication, still leaving 1/3 unable to control it (6). However, that still does not justify the lack of funding. The stigma behind the neurological disorder creates obstacles such as discrimination within the medical field as well as in everyday life. The stigma behind epilepsy is woven with myths that disadvantage those with epilepsy to be treated as if they had an infectious disease, was a burden, or mentally incapable of making decisions when epilepsy has a spectrum of severity. One of the last times there was an initiative to improve research for epilepsy was in 2009 when Senator Edward M. Kennedy was advocating for supporting a bill to enhance funds with support from the White House senior advisor David Axelrod who has an epileptic daughter. Unfortunately, the bill lost momentum when Senator Edward M. Kennedy passed that year. Previous Chief Justice John Roberts but can be used as a prime example as to how a person in power within the government can gather support implement changes towards research by advocating. Advocacy seems to only occur when one becomes directly affected by it. 

One case of beneficial research done by Dr. Gemma Carvill in 2019 possibly found a piece of genetic code that could be causing seizures. Dr. Carvill was able to abate the number of seizures by 70% in rats by performing stem cell brain implants in comparison to rats without receiving the transplant (7). As a neurologist, her goal is to identify the genetic factors that affect epilepsy but also trigger other gene expressions relating to epilepsy (8). Her research is pioneering a new territory to be able to create models of what occurs when coping with epilepsy and was possible by federal and foundational grants to result in rewarding findings. With more funding for epilepsy, more beneficial findings will be made, similar to Dr. Carvill’s research, to improve our global community.

The reason we need to do more research is to be able to control the disorder. Each new anti-seizure medication, such as Brivaracetam, indicates that advancements can be made with research. But the life-saving medications do not always come at a cheap price resulting in some not being able to afford it, which is why more research needs to be conducted to find more sustainable therapies. This task cannot be conquered in a day, but hopefully, it will be done in the near future and it starts with advocating for awareness of the lack of research. One advancement after another improves the quality of life of ourselves, our family, our neighbors, and our world.

Resources

(1) “WHO | Neurological Disorders, Including Epilepsy.” Who.Int, 2020, www.who.int/mental_health/management/neurological/en/, /entity/mental_health/management/neurological/en. Accessed 22 Oct. 2020.

(2) “Epilepsy & Seizure Facts | Epilepsy Foundation of Michigan.” Epilepsymichigan.Org, 2017, epilepsymichigan.org/page.php?id=358#:~:text=Epilepsy%20is%20the%20fourth%20most,some%20point%20in%20their%20lives. Accessed 6 Oct. 2020.

 (3) DrupalAdmin. “FAQs.” American Epilepsy Society, 3 Dec. 2013, www.aesnet.org/clinical_resources/faqs#Six. Accessed 6 Oct. 2020.

(4) Meador, K. J., et al. “Disparities in NIH Funding for Epilepsy Research.” Neurology, vol. 77, no. 13, 26 Sept. 2011, pp. 1305–1307, www.ncbi.nlm.nih.gov/pmc/articles/PMC3265048/, 10.1212/wnl.0b013e318230a18f. Accessed 7 Oct. 2020.

(5) “More Americans Have Epilepsy than Ever Before.” CDC, 1 Jan. 2016, www.cdc.gov/media/releases/2017/p0810-epilepsy-prevalence.html#:~:text=The%20number%20of%20U.S.%20adults,been%20available%20for%20every%20state. Accessed 22 Oct. 2020.

(6) Iasemidis, L.D. “Epileptic Seizure Prediction and Control.” IEEE Transactions on Biomedical Engineering, vol. 50, no. 5, May 2003, pp. 549–558, ieeexplore.ieee.org/abstract/document/1198245/citations#citations, 10.1109/tbme.2003.810705. Accessed 7 Oct. 2020.

(7) January. “Epilepsy Research Findings: January 2019 – CURE Epilepsy.” CURE Epilepsy, 15 Jan. 2019, www.cureepilepsy.org/news/epilepsy-research-findings-january-2019/. Accessed 7 Oct. 2020.

 (8) “Research | Carvill Lab.” Northwestern.Edu, 2020, sites.northwestern.edu/carvilllab/research/. Accessed 10 Oct. 2020.

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