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 of Dravet syndrome, but also the financial burden of obtaining the necessary medication. The inclusion of Skyler’s medications in the Pharmacy Benefit Plan is essential to supporting families like the Coghlans.
Skyler Coghlan on her way to the hospital. (Current issue)
Who is Skyler Coghlan?
Dravet syndrome, a devastating disease, presents with severe epileptic seizures and often results in intubation or hospitalization. Skyler’s case is an example of 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 how brain cells function, it poses unique and complex challenges for healthcare professionals. Although the syndrome was only discovered thirty years ago, medical professionals strive to research advances to alleviate its effects and alleviate the suffering it causes patients like Skyler. However, current treatment options, such as expensive medications, pose significant financial barriers for families.
Father, Daniel Coghlan. (Current issue)
One of the drugs Skyler was prescribed costs a whopping $40,000 a year, putting a huge burden on her family. While Skyler’s prescription is covered by the Royal Children’s Hospital, many other Dravet syndrome sufferers are not so lucky as the drug is excluded from the PBS. The lack of PBS coverage exacerbates the already enormous financial pressure on countless families, further limiting their access to essential medicines. By adding Skyler’s medications 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. (Current issue)
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 reduced quality of life. Inclusive healthcare support, such as the PBS Essential Medicines List, 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 them and their families. Stay well and stay connected with us.
Skyler Coghlan suffers from a condition called Dravet syndrome. (Current issue)
Categories: Trends
Source: HIS Education