MS Awareness Week and New Website Launch

August 28, 2017 | Uncategorised

This week is MS Awareness Week (28 August – 3 September 2017) and as part of our campaign we would like to update you about a few developments by MSNZ in the work we have been doing to raise the awareness for MS and advocating on behalf of those affected by the condition across the county:

Launch of our new website

We are excited to launch our new website www.msnz.org.nz and the home of all the information and updates from the MSNZ National Office. We hope you will enjoy exploring our new site as much as we did creating it. The site is designed with you in mind, whether you are diagnosed with MS, looking for information about MS, or looking to support MS. One of MSNZ’s primary aims is to raise awareness of MS as a chronic condition affecting 4000 New Zealanders. Our new website will help us with this mission!

The website is still under development and we will be continually adding new topics and updating the information as new evidence about treatments, management strategies and understandings about MS emerge. New information will be identifiable by the little orange NEW icon. We would love to hear your feedback and suggestions about other areas of information that you want to know about that will help you live your life with MS or care for someone diagnosed. A huge thank you to Four Winds Foundation for their generous support enabling us to launch this new website and our web developers Hairy Lemon.

Busting the Myths this MS Awareness Week

Despite MS being one of the most common neurological conditions in NZ it is also one of the most unknown and misunderstood. For MS Awareness Week, have put together some of the common myths and truths around MS and hope to break the misconceptions. See how many of the myths you can bust here. Please consider sharing to help educate your friends, families and colleagues about MS. If each person learns just one new thing we can make small steps to make a big impact!

Thanks to generous funding from Pub Charity Ltd we will be raising awareness for MS throughout the week on Stuff, Health TV and NZME radio stations, who have also provided us with their support.

Please consider donating to MSNZ this MS Awareness Week. Funds raised by MSNZ support our mission to advocate for people with MS to have access to first world treatment, resources and services to improve their well-being and quality of life as well as reducing the burden of MS on those diagnosed, their carers and families. MSNZ also provides support, information and educational resources and training opportunities to 18 independent Regional Societies supporting people living with MS in their communities.  Our organisations must raise over 90% of our annual income on average each year from generous donors, grants, bequests and businesses so THANK YOU for any support, big or small, you are able to provide.

Regional Street Collections

If you see our MS Regional Societies and all their amazing volunteers out on the streets this MS Awareness Week collecting, please consider giving a donation to help them continue to provide information, support and individual advocacy to people in their local communities. All funds raised through MS Street Appeals stay within the community.

Thank you to all the amazing volunteers donating their time to support our Regional Societies to help raise vital funds to continue providing support to people living with the impacts of MS in their communities.

MSNZ Advocacy

As part of our Awareness Campaign we have also published a media release about the advocacy work we have been doing to increase access for funded disease modifying treatments (DMTs) based on new research. The criteria imposed on NZ available treatments is much more restrictive than in other countries and not supported by current research. MSNZ has met with PHARMAC to present research to substantiate changes to the current funding criteria for DMTs and made an official submission for review. MSNZ has presented PHARMAC with requests based on highly regarded evidence to warrant a review of the Special Authority Criteria for DMTs for Relapsing Remitting MS. MSNZ has requested:

1. The widening of access to funded DMTs for those with Clinically Isolated Syndrome (CIS) that fulfil the McDonald 2010 criteria for the diagnosis of MS.
2. Amending the stopping criteria to EDSS 6.5 for all patients irrespective of EDSS score at entry.
3. Amending the definition for ‘significant relapse’ in the Special Authority criteria for all MS treatments to ‘must last at least 24 hours’ in line with the McDonald 2010 criteria.
4. Use of an alternative measurement scale to assess effectiveness of treatment as EDSS scoring ignores improvements to fatigue and cognitive function.
5. Review of the position of MSTAC and the need to review every application for DMT funding.

We hope to hear an official response to our requests in the coming months.

Read more about the advocacy work of MSNZ

MSNZs Advocacy: Click here to learn more about MSNZs current areas of advocacy

Treatment Criteria: Submission to PHARMAC July 2017 RE the reviewing the Special Authority Criteria for MS Treatments from MSNZ

MSTAC: Submission to PTAC July 2017 RE MSTAC Role from MSNZ

Read our research review paper here: MSNZ – DMT and Sativex Research Review Report – June 2017

Read our media release here: MSNZ – Media release – New research justifies increased access to restricted drug treatments for people with MS – 28 August 2017