Advocacy

Actively Advocating

Multiple Sclerosis New Zealand’s mission is to advocate for people with MS in New Zealand to have access to first world treatment, resources and services to:

  • improve their well-being and quality of life
  • reduce the burden of MS on those diagnosed, their carers and families.

 

MSNZ strives to achieve this through 3 pathways:

  • Systemic advocacy: National advocacy to improve the lives of people with Multiple Sclerosis in New Zealand
  • Collaborative advocacy: Working with other organisations and health professionals on common issues
  • Awareness raising: Working to raise awareness nationally for MS as a chronic condition affecting New Zealanders and highlighting the needs of those living with the condition

 

If you require advocacy support for your unique situation you can contact your Regional Field Worker who can provide individual support. Find and contact your Regional MS Society here.

 

We would love to hear from you via our online contact form if you would like to:

  • know more about MSNZs advocacy work
  • share your story about how any of these issues impact you
  • tell us how MSNZs advocacy has had a positive impact on your life
  • highlight an issue MSNZ should be aware of
  • contribute in any way to our advocacy work

 

 

2017 Areas of Advocacy

MSNZs advocacy is driven by the expressed needs and concerns of those living with MS. While we would like to advocate for all issues affecting people with MS in NZ, the small advocacy team annually chose the key issues where we feel we can make positive and meaningful impact and have the best possible chance of success within our resources.

After reviewing the feedback from the 2016 MS Care Survey, listening to our Regions who raised concerns about issues on-going in their communities, as well as reviewing international best practices, the MSNZ’s advocacy team agreed to prioritise several key issues:

 

Under resourced neurology services
The NZ health system is already seriously short of neurologists and the position will only get worse. Based on international standards NZ should have 74 neurologists for the current population size. However, NZ has just 50% of this recommended number impacting on access to services. MSNZ is advocating for increased funding for DHBs to address critical staffing deficits in neurology services for specialists, such as neurologists and MS Nurses. Appropriate staffing will alleviate increasing pressure on the system and ensure timely and equitable access to diagnosis and treatment.

Read our Media Release here: MSNZ – Media release – Drastic under-resourcing of DHB neurology services – 6 July 2017

 

Disease Modifying Treatments
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:

  • 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
  • Amending the stopping criteria to EDSS 6.5 for all patients irrespective of EDSS score at entry
  • 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
  • Use of an alternative measurement scale to assess effectiveness of treatment as EDSS scoring ignores improvements to fatigue and cognitive function
  • Review of the position of MSTAC and the need to review every application for DMT funding

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

 

Ocrevus (Ocrelizumab)

MSNZ is also advocating for the inclusion of Ocrevus on the Pharmaceutical Schedule as a funded option for both Relapsing Remitting and Primary Progressive MS.

 

Sativex
Sativex is the only product cannabis based product that has made a therapeutic claim and is approved by Medsafe for “use as an add-on treatment for symptom improvement in patients with moderate to severe spasticity due to Multiple Sclerosis 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”. Use of Sativex is not listed by Medsafe as approved for any other reason (www.medsafe.govt.nz/profs/RIss/Sativex.asp). In 2015 PHARMACs Pharmaceutical Technical Advisory Committee (PTAC) reviewed the evidence to potentially fund Sativex but concluded that the evidence was not conclusive enough.

MSNZ has:

  • Met with PHARMAC and provided evidence to support the use of Sativex for people with MS related pain and spasticity.
  • MSNZ has requested that PHARMAC to review the funding of Sativex for people with MS where evidence shows the treatment would be clinically appropriate and on the recommendation of a GP.

 

Improved early diagnosis and treatment
Currently PwMS are experiencing huge waiting times for first and follow up appointments in many DHBs. In NZ the average age of symptom onset is 37.8±11.8 years with the mean age of diagnosis being 42.2 years. This indicates a significant delay between the onset of first symptoms and diagnosis. Early diagnosis and treatment is crucial for limiting and managing the irreversible, progressive deterioration that people with MS experience. General Practitioners can play a key role in identifying early symptoms and supporting people with MS to make informed decisions and provide care where no DMTs are available.

 

MS Guidelines and Pathway
MSNZ would like to see the development of nationally consistent guidelines to provide a pathway and expected level of care and service for people with chronic conditions, such as MS. Such guidelines exist in the UK and provide a consistent pathway ensuring all people with MS receive the same services, information and support irrelevant of where you live in the country. Guidelines would address what information a person should be entitled to, for them to be included in the decision about their own health care.

 

Access to specialists within a reasonable timeframe
Delays run the risk of people being unable to qualify for drug treatments by the time they can apply for funding. MSNZ is concerned that nationwide there are delays and inequitable access to specialist services. MSNZ is advocating for timely and equitable access to MRI scans and annual reviews so that people with MS can access an MRI scan every year regardless of whether on treatment. Regular monitoring will allow for future planning based on an individual’s recorded progression.

 

Integrated multidisciplinary care
DHB services need to be integrated internally and work cohesively with services available in the community, including MS Regional Society Field Worker Services, to support people with chronic conditions. There is a need to address the lack of coordinated services within DHBs and between DHBs and primary and community services to best support those with long-term chronic conditions.

 

Residential care in age appropriate facilities
There is a lack of respite and long term residential care facilities for young people with chronic conditions including MS. This is a long-standing issue which is not widely addressed.

 

Increased funding for Charities
With over 27,000 charities and a reduction in funders, the pool of funds is shrinking and funding for NGOs that fulfill functions that are not supported by central government is increasingly difficult to come by. Organisations such as ours heavily rely on the private sector to fund and support our work. MSNZ must raise 90% of our annual budget from the donors, bequests, grant funders and businesses.

 

Previous Advocacy Successes

MS Treatments
In 2014, MSNZ led a successful advocacy campaign in which two new treatments, Tysabri® and Gilenya®, were funded for relapsing remitting MS. MSNZ, as the spokesperson on all national issues related to MS, led the campaign and made submissions on behalf of our membership and People with MS (PwMS). Interested parties were consulted for feedback and input into the submission, including PwMS, carers, health professionals both in New Zealand and abroad, and our MS Regional Societies.

New Zealand finally funded these treatments eight years after other first-world countries, meaning that people no longer have to show a level of disability before receiving treatment, but are able to be treated from diagnosis. Data from the MSNZ-funded MS Incidence Study, regarding the numbers of people diagnosed and their localities, were used by PHARMAC to calculate the potential uptake of these treatments—estimated to be 400 in the first 12 months. At the one-year mark, 30 November 2015, 514 applications had been submitted for funding, of which 485 were accepted, nine pending, 14 deferred and eight declined.

In December 2015 it was announced that two further treatments, Tecfidera® and Aubagio®, were to be funded and made available under the same funding criteria. MSNZ once again submitted to PHARMAC (in October 2015) in support of this move and advocated for extensions to the entry and exit criteria. We again sought support and input through consultation with our membership and networks. These treatments were made available from 1 February 2016. Some changes were made to the criteria; however, we feel there are still improvements to be made, and are continuing to discuss our concerns and suggestions with PHARMAC. We are particularly concerned about the strict entry and exit criteria: there are a number of PwMS who do not fit the criteria at entry, but for whom early access would be highly beneficial. With advice from medical professionals we have continued to raise our concerns with PHARMAC and are hopeful that, as the treatments become better understood in New Zealand, there will be flexibility within the system. We thank PHARMAC for its continued willingness to engage with us to ensure that people with MS receive the best access to services and treatments. We are pleased to see the growing commitment to ensuring that PwMS are receiving the best treatments available.

We are receiving extremely positive feedback from people accessing treatment, with people returning to work and being able to manage their lives with fewer relapses, hospital admissions, and less need for support.

MORE ABOUT MS

Multiple Sclerosis Logo About MSNZ
Who we are and what we do?

MSNZ is a non-profit organisation formed to support people with MS in NZ

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Regional Support
What do our Regional Societies offer?

A wide variety of support and services for people affected by MS

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Contact your society
Contact a specialist MS Field Worker

To find out about the supports and services available to you in your area

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