The Philippines lacks data on autoimmune encephalitis, making misdiagnosis “a major concern,” according to a recent study.
Due to the difficulty of establishing a diagnosis of the disease, as well as a lack of a registry for patients with it, the establishment of national health programs for this condition is limited, according to the study, “Autoimmune Encephalitis in the Philippines: A Scoping Review on the Treatment Gaps, Challenges, and Current State of Care.”
The study was published on Feb. 7 last year on Frontiers in Neurology.
Encephalitis is an inflammation of the brain and is considered a neurological emergency. Survivors, who may acquire brain injuries with life-changing consequences, are at risk for self-harm.
According to “Mental health outcomes of encephalitis,” an international web-based study published on medRxiv on Feb. 7, 2023, psychiatric symptoms are common after encephalitis.
The most common self-reported symptoms were anxiety (75.2%), sleep problems (64.4%), mood problems (62.2%), unexpected crying (35.2%), and aggression (29.9%). Over a quarter (37.5%) of respondents had thought about suicide, and 4.4% had attempted suicide since their encephalitis diagnosis.
“You can’t see a broken brain, and so often the hidden nature of the difficulties following encephalitis is another problem for people,” said Ava Easton, a co-author of the study and chief executive of non-profit organization The Encephalitis Society, in a March 2 Zoom call.
“Everyone around you thinks you look fine, you look like you did before, but actually things aren’t okay.”
People who struggle with brain injury resulting from encephalitis may struggle with their marriage, Ms. Easton said, because they “have a very different sense of who they are now to who they were before.” Others may not be able to return to their jobs as a result of memory problems.
PATIENT REALITIESEncephalitis can occur at any age, in any part of the world, and is caused either by an infection, usually viral, or by a person’s own immune system going haywire in response to infections, tumors, or specific antibodies. It may only cause mild flu-like symptoms—such as a fever—in some. In others, the symptoms—like hallucination and seizures—might be more severe.
Outcomes of encephalitis include problems with daily living skills, personality changes, loss of taste and smell, fatigue, and sleep disturbance. It’s difficult to predict how each individual will be affected, according to Mayo Clinic, which is why prompt diagnosis and treatment are important.
One such patient living with the outcomes of the medical condition is Ladylene B. Bascos, who was diagnosed with the autoimmune type In May 2021.
“Mahirap, kasi hindi ko po alam kung ngayong araw susumpungin ako [It’s hard, because I don’t know when my symptoms will act up],” she said in the same Zoom call. Among these symptoms are sleep disturbance and hallucination: “Hindi [ako] nakakatulog sa gabi. May naririnig din akong sounds.”
Since the symptoms reoccur every four months, she’s also had to be confined in a hospital every four months for an intravenous (IV) transfusion, said Nestor A. Tagulao, Ms. Bascos’s fiancé.
“Pag nakita ko na hindi na siya matutulog, that’s the time na dadalhin ko na siya sa hospital [When she’s not able to sleep anymore, that’s when I know I need to bring her to the hospital],” he told BusinessWorld.
COSTSThe expenses at the onset of Ms. Bascos’s disease included the transfusion of four IV bottles per day for five days of treatment. According to Mr. Tagulao, each of those IV bottles costs P12,000. – 16,000.
Ms. Bascos also chose to transfer to a public hospital as private hospital costs had already reached north of P800,000.
The government healthcare insurer PhilHealth treats encephalitis as “all encompassing,” Mr. Tagulao added.
“PhilHealth only allocates a P12,000. reduction on fees [for] private hospitals… That P12,000. includes encephalitis na mas lighter, kasama na din yung ganito ka-grabe [encompasses treatments for both mild and severe outcomes].”
“Kailangan nila maging specific kung anong klaseng encephalitis ang tinutukoy nila, para magkaroon ng variation yung allocation ng funds [PhilHealth needs to be more specific about encephalitis cases, so there can be a variation in the allocation of funds],” he said.
ADDRESSING DIFFICULTIESFor encephalitis caused by infections, therapies such as neuropsychology and neuropsychiatry offer help, Ms. Easton said.
Neuropsychologists “map where the person was before encephalitis and where they are now, and then try and work with people with a plan of rehabilitation – depending on what their problems are,” she said.
Neuropsychiatrists, meanwhile, can provide the necessary medication to those with mental health problems, or else refer them to other therapies.
These therapies, Ms. Easton noted, are tailored to the specific difficulties an individual has.
“It’s often not about providing a treatment for ongoing problems,” she said. “It’s about rehabilitation, and the therapies that can address the difficulties that have been left as injury to the brain.”
“Some mental health issues are not actually mental health issues. Some are neurological. Some are caused by the immune system,” added Mr. Tagulao. “Baka nandun yung ugat ng problem [Maybe that’s the root of some problems].” — Patricia B. Mirasol