This article was published by Tacoma Weekly on June 3rd, 2025
View Article On Tacoma Weekly’s Website Here
By Caroline Menzia
At just 5 months old, my son Corbin was diagnosed with Infantile Spasms (IS), a rare and devastating type of seizure. Corbin was immediately referred to the Neurology team at Seattle Children’s Hospital. The exceptional team, with their vast experience, suspected that Corbin’s IS was likely due to a genetic condition. They believed that the Ketogenic Diet – a medical treatment high in fat, low in carbohydrates, and moderate in protein – would be the best plan to gain control of this “medical emergency.”
However, current insurance policies required Corbin to fail three anti-seizure medications before he could begin this life-saving treatment. The “three failed medications” policy came into effect, a requirement put in place by the Pharmacy Benefit Manager (PBM) in charge of Corbin’s policy. The process of introducing and weaning off multiple powerful medications was long and painful, filled with heartbreak and an endless list of side effects.
The first medication Corbin tried was a steroid called Adrenocorticotropic Hormone (ACTH). This required a multi-day hospital stay followed by daily injections at home. The risk of severe side effects meant almost daily doctor’s appointments. It quickly became clear that ACTH was not working. Despite the side effects impacting his quality of life, our baby continued to endure catastrophic spasms all day long. Our child was a “medical emergency,” yet insurance required us to continue this agonizing process.
After failing ACTH, Corbin was diagnosed with Lennox-Gastaut Syndrome (LGS), a severe form of epilepsy that involves multiple seizure types that persist despite treatment and often lead to intellectual disabilities. Corbin started his second anti-seizure medication at just six months old and his third at eight months. As parents, we felt helpless, and his doctors’ hands were tied. While we continued jumping through insurance hoops, Corbin’s seizures remained a “medical emergency.”
At nine months old, after failing three anti-seizure medications, Corbin was finally approved to start the Ketogenic Diet. Over several days, Corbin’s medical team slowly introduced the diet while his vitals and labs were monitored to ensure his body was tolerating the changes. Corbin’s formula mixture was weighed to 3/10 of a gram, and his water was measured down to the milliliter. Fortunately, Corbin’s body responded well to keto, and we were sent home, hopeful to see a decrease in seizures and an end to the “medical emergency” loop we had been trapped in.
Within days, we noticed a significant improvement in Corbin’s overall quality of life and a substantial decrease in seizure activity. Weeks later, an EEG confirmed what we had hoped for – no sign of seizures.
Corbin has been on the ketogenic diet for almost five years now, and it has been life-changing for all of us. Using the ketogenic diet as a medical intervention is never the easy solution, but it has definitely been the right choice for Corbin, just as his neurology team had initially predicted. We work closely with Corbin’s keto team, completing labs and follow-up appointments every three months.
There may not be a cure for FOXG1 Syndrome (Corbin’s genetic condition) in his lifetime. I will always wonder how his life might have been different if we had been allowed to start keto immediately. I will never be okay with the fact that Corbin suffered with Infantile Spasms longer than necessary and that his life continues to be made more difficult because of current insurance policies and barriers.
Congress has the ability to dismantle existing loopholes in federal policies that would impose much-needed transparency and accountability on health care systems, focusing on 340B hospitals and PBMs. Currently, a number 340B hospitals across Washington work in tandem with pharmacies and PBMs to pocket profits from patient visits, despite being awarded federal funding to lower the cost of care for those patients most in need.
Requiring PBMs to disclose their pricing practices, and 340B hospitals to disclose their expenditures, would help pass savings onto patients instead. It would also protect independent pharmacies from unfair reimbursement practices, ensuring that patients have access to a diverse range of providers and treatments.
It’s time to close the existing loophole that forced Corbin to fail three other medication treatments before moving forward with keto. Updates to federal programs could save rare disease patients like him months of guesswork. While we missed the opportunity to make these changes last Congress, we have another opportunity to save patients precious time and expenses this session. Patients deserve straightforward solutions that fit their medical needs: Fix 340B hospital and PBM loopholes now.
Caroline Menzia, a Tacoma native, is a rare disease parent caregiver and advocate. She is a member of the FOXG1 Research Foundation Parent Support Team and loves finding opportunities to teach others how to better support her son and the disability community.