My name is Melissa Tavares, I am 31 years old and from Edgewater, Maryland. I am a mother of two, with both my son Victor and daughter Nina diagnosed with epilepsy. Parenthood has thus remained a blessing but it has come with its tremendous challenges as no one ever expects to have two toddlers with medical conditions that require expensive medications.
Both of my children were prescribed Keppra to manage their symptoms, but the drug ultimately only successfully controlled my son’s symptoms at a quarterly cost of $10, although the drug ranges in list price between $1000 to $1,600 according to the pill size. My daughter, however, did not respond well to Keppra and was then prescribed Vimpat to treat her symptoms.
Vimpat is administered based on body weight and therefore carries a different price as the dosage needed increases; already instilling a financial fear as I see my daughter grow up. As of now, my daughter’s Vimpat list price is $442 and comes with a copay cost of $85 for 25 days and about $102 a month. This total amount of money may not seem as much to some, but for my family and I, we fear to know or think about how the total may increase as my children grow up, develop, and may potentially need more medications or higher prescription dosages.
Healthcare costs and challenges have already been a struggle for my husband and I.
When my daughter’s seizures first started, we took an ambulance to the hospital only to be sent back home and wait due to a cluster of seizures occurring without hospital staff being nearby to observe. It felt like the medical team was telling us that we, as parents, did not know what we were seeing. I felt completely helpless being sent home with the risk that my daughter could seize again and not catching it on camera would prevent her from accessing or receiving treatment. Or worse, she could go into an emergency-level seizure mode, which she did 48 hours later.
Due to the health needs of my children, I have also needed to make many personal sacrifices as a full-time Occupational Therapist. I have had to rearrange my work schedule and work late nights when my children and I should be asleep because I have used up all of my sick leave for them. I do this to avoid having to take unpaid sick leave to tend to my toddlers. I have sacrificed my own sleep and well-being which has led me to exhaustion and burnout and has made it hard for me to concentrate at work and regulate my own emotions. All these factors lead me to feel overwhelmed and have made me a more vocal person and advocate for the needs of my children.
At the end of the day, no one should ever have to face high-cost prescription drug prices because you have sick children. Not only do they become a financial burden on a family, but it also produces emotional strain. It feels as though we are being punished for having children with special needs or health conditions. Myself and many others need lower-cost prescription drug prices to stay healthy, become cured, or simply keep my children alive and well, without having to go into debt. Affordable prescription drug prices, regardless of who you are, should not be considered a luxury but rather a human right.
