More Research, Awareness, and Treatment Needed for This Life-Altering Illness

Encephalitis411, a U.S. based 501(c)(3) nonprofit that aims to improve the quality of life for those impacted by encephalitis, sends condolences to the family of Former North Carolina Senator Kay Hagan. Hagan was diagnosed with encephalitis three years ago and had since continued to struggle with its complications.   

Image/ US Congress

“We are deeply saddened to learn about Hagan’s death, as we were getting reports of continued improvement from her family over the last three years,” said Becky Dennis, board president of Encephalitis411. “The complications from encephalitis put many families on a roller coaster of hope and fear on a day-to-day basis. Hagan’s sudden death was a real shock to us.” 

An estimated 20,000 Americans are diagnosed with encephalitis each year from a variety of causes, including Powassan, the tick-borne illness that struck Hagan three years ago. Other causes include mosquito-borne illnesses such as Eastern Equine Encephalitis (EEE) and West Nile Virus (WNV). The Herpes Simplex Virus (HSV) (carried by 50% of American adults) can attack the brain, resulting in encephalitis. Enteroviruses, Varicella-Zoster (chickenpox) and auto-immune disorders are also frequent causes. And many causes are unknown. As the causes of encephalitis vary widely, the condition is extremely difficult to diagnose. 

Encephalitis is swelling of the brain. While the brain is swollen, damage occurs — some are short-term, but in many cases the damage lasts a lifetime. Ongoing challenges range from memory issues and difficulty with motor functions, to headache and neuropathy, to complications with basic life-sustaining roles such as breathing and digesting. Some of those impacted will become comatose, and far too often, the outcome is death. 

“The news about encephalitis comes and goes in the U.S. We’ve recently been hearing about neuro-invasive EEE in the Northeast and we continue to hear about WNV in many places across the country. But more often than not the stories focus on individual cases and not the overall lifelong burden of encephalitis that becomes the new reality for thousands of Americans and their families each year,” said Dennis. 

“Senator Hagan’s family turned to Encephalitis411 and other resources for answers during her illness, but this is an under-served and under-studied illness that deserves more attention given its frequency. Because of the complexity of encephalitis, even seasoned physicians who have seen hundreds or even thousands of patients need more data to better treat this brain injury.” 

“With 20,000 people diagnosed each year in the U.S., it’s really not as rare as people think. This should not be a ‘diagnose and adios’ type of illness given its wide range of effects on a patient’s brain,” said Dr. Arun Venkatesan, Director of the Johns Hopkins Encephalitis Center and an Associate Professor at the Johns Hopkins University School of Medicine, in the Department of Neurology, Division of Neuroimmunology and Neuroinfectious Diseases. Venkatesan also serves as a scientific advisor to Venkatesan goes on to say, “While imaging has improved in helping make a more accurate diagnosis, we have a long way to go in providing standardized treatment protocols based on how severely a patient is impacted.” 

In a recent poll conducted by Encephalitis411 with 300+ respondents, only 21% of patients reported a quick diagnosis (less than 3 days). And in this same poll, only 28% reported a thorough treatment plan initiated by their physician, while others were left to navigate on their own. 

“The overall cost of encephalitis is extremely high with more than $2 billion per year in acute hospital costs alone. This doesn’t include costs after patients are discharged,” said Dr. Carol Glaser, DVM, MD, a pediatric infectious disease physician and scientific advisor for Encephalitis411. “Patients and their families should have better options for improvement, rather than being left to navigate the illness and its aftermath themselves.”  

A study[1] conducted in 2012 concluded that more than 50% of encephalitis survivors are never able return to work, permanently impacting their financial livelihood. Adding in ongoing medical treatment costs to address the wide range of ongoing symptoms, their financial state becomes further exacerbated.  

“What we’re missing is a medical discipline that focuses solely on encephalitis and its widespread impact on a patient’s overall health,” said Dennis. “Researchers focusing on Cerebral palsy, ALS or Cystic Fibrosis— all conditions that occur 3x less frequently than encephalitis – have done a tremendous job of studying these illnesses and training physicians who specialize in these disorders and can oversee the overall patient treatment. This comprehensive approach is completely absent with encephalitis where there are some experts, but not a united effort to treat the complete patient experience versus individual symptoms.” 

Encephalitis can happen to anyone at any age, anytime, anywhere.  As with Hagan’s tick bite, we are painfully aware that these are random exposures that can severely impact a life forever. And with the news of four other encephalitis-related deaths this week, our mission to raise awareness about this devastating brain disorder, in the medical community as well as the general public, is intensified. 

Encephalitis411 states that “patients with encephalitis should no longer be told by healthcare professionals that ‘The worst part is over. All the best to you in your recovery.’ This happens far too often. We are working toward change in the encephalitis landscape in the United States.”