MS: Busting the Myths
April 29, 2024 | Advocacy, Aids, Funding, Life with MS, My Story
Sativex, or Cannabidiol with tetrahydrocannabinol, is an add-on treatment approved by Medsafe for symptom improvement in patients with moderate to severe spasticity due to multiple sclerosis (MS). It is indicated for people who have not responded adequately to other anti-spasticity medication and who demonstrate clinically significant improvement in spasticity related symptoms during an initial trial of therapy. Medsafe’s approval of Sativex is based on an evaluation of clinical evidence assessing benefit, safety and efficacy.
Sativex can be life-changing, relieving the debilitating impacts of muscle spasms in people with MS. MS spasticity affects daily life and a person’s ability to engage in activities, quality of life and employment. Spasticity causes significant pain, reduces mobility, increases risks of falls and injuries and impacts sleep and mental health. Therapeutic options for muscle spasticity are limited and ineffective.
However, Sativex remains unfunded by Pharmac and while potentially beneficial, is cost prohibitive. The few that can afford it are spending over $300 every month which for many is unsustainable and revert to other means of accessing other forms of medicinal cannabis. While studies show Sativex may not work for everyone, we believe that everyone should have the opportunity to try this potentially life-improving treatment.
We are currently preparing a submission to Pharmac calling for the funding of Sativex for MS patients. While we will present the clinical evidence we have available to us, data does not tell the patient views and needs. Critical to our submissions are patient stories highlighting the real-world problems and impact that access has.
We’re reaching out to you to please share with us your story about spasticity. How does spasticity impact you? Have you tried Sativex and how has it worked for you? Do you use an alternative medicinal cannabis option because of the barriers to accessing Sativex? How does lack of funded access impact you, and what funding Sativex would mean to you and your family?
We are happy to keep stories anonymous to maintain your privacy as we know for many this can be a barrier to being open to share your story.
Please share your story with us by emailing it to info@msnz.org.nz by Friday 24th May 2024.