Epilepsy New Zealand is proud to stand alongside 17 other patient organisations in support of the Forbidden Pharmacy – a powerful public awareness campaign highlighting the reality faced by thousands of New Zealanders who cannot access life- changing medicines that are already available in many other countries. The campaign calls on the Government and Pharmac to ensure New Zealanders living with epilepsy have access to the medicines they need to achieve the best possible health outcomes.
Specifically, we are advocating for:
- Public funding of Fycompa® Perampanel for eligible New Zealanders living with epilepsy.
- Access to a broader range of treatment options for people with hard-to-control seizures when existing funded medicines have not been effective.
- A reduction in the physical, emotional, and financial burden that uncontrolled seizures place on individuals, families, whānau, and the healthcare system.
- Equitable access to epilepsy medicines, regardless of where someone lives or their financial circumstances.
For many people living with epilepsy, Perampanel represents an important treatment option. However, because it is not publicly funded in New Zealand, eligible patients who wish to access it must currently pay significant out-of-pocket costs. For many individuals and families, this places an effective treatment beyond their financial reach.
By highlighting Perampanel through the Forbidden Pharmacy campaign, Epilepsy New Zealand aims to raise awareness of the real-life impact that limited access to funded medicines has on people living with epilepsy. Public funding would ensure that access to Perampanel is determined by clinical need rather than a person’s ability to pay.
For people whose seizures remain uncontrolled despite trying other medicines, Perampanel can provide a vital additional treatment option. Improved access has the potential to reduce seizure frequency, improve safety and independence, enhance quality of life, and enable greater participation in education, employment, and community life.