Imagine the harrowing journey of Skyler Coghlan, a two-year-old girl suffering from the debilitating Dravet syndrome. This rare and severe form of epilepsy leaves Skyler at the mercy of multiple seizures every week, causing immense suffering to both her and her parents, Daniel and Bianca. As they tirelessly fight to give Skyler every possible opportunity for a fulfilling life, they face not only the physical and emotional challenges that Dravet syndrome presents, but also the financial burden of obtaining the necessary medication. The inclusion of Skyler’s medication in the Pharmaceutical Benefit Plan is crucial to supporting families like the Coghlans.
Skyler Coghlan on her way to the hospital. (A current affair)
Who is Skyler Coghlan?
Dravet syndrome, a devastating disease, manifests in severe epileptic seizures and often results in intubation or hospitalization. Skyler’s case exemplifies the detrimental impact of this condition on her life and the lives of her family. Because Dravet syndrome is caused by a mutation in the SCN1A gene, which affects brain cell function, it poses unique and complex challenges for healthcare professionals. Although the syndrome was only discovered thirty years ago, medical experts are pressing to explore advances to mitigate its effects and alleviate the suffering it inflicts on patients like Skyler. However, current treatment options, such as expensive medications, pose significant financial hurdles for families.
Father, Daniel Coghlan. (A current affair)
One of Skyler’s prescription drugs costs a staggering $40,000 a year, placing a huge burden on her family. While Skyler’s prescription is covered by the Royal Children’s Hospital, many other people with Dravet syndrome are not so lucky due to the drug’s exclusion from the PBS. The absence of PBS coverage exacerbates the already overwhelming financial pressure on countless families, further restricting their access to essential medicines. By adding Skyler’s medication to the PBS, the government can ease the financial pressure these families face and allow them to focus on providing the best care for their loved ones.
Mother, Bianca Coghlan. (A current affair)
The struggle faced by people with Dravet syndrome and their families extends beyond the financial realm. As a result of the severity of the condition, people are often unable to fully participate in daily activities, leading to isolation and an impeded quality of life. Inclusive healthcare support, such as the essential medicines list in the PBS, would provide a much-needed lifeline for Dravet syndrome patients. The inclusion of PBS would ensure that patients, like Skyler, can access the medications needed to manage their condition while also providing a sense of hope and normalcy for themselves and their families. Stay well and stay connected with us.
Skyler Coghlan suffers from a condition called Dravet syndrome. (A current affair)
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Source: vtt.edu.vn