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8 December 2015

MSNZ welcomes PHARMAC’s decision to fund two new first-line treatments for relapsing- remitting forms of Multiple Sclerosis


The Multiple Sclerosis Society of New Zealand (MSNZ) welcomes PHARMAC’s decision to fund two new first-line treatments for relapsing-remitting forms of MS.

The new treatments: dimethyl fumarate (Tecfidera) supplied by Biogen NZ and teriflunomide (Aubagio) supplied by Sanofi-Aventis NZ will be funded in the community and in DHB hospitals, subject to the same restrictions that apply to natalizumab (Tysabri) and fingolimod (Gilenya).

“There are approximately 4,000 people with multiple sclerosis in New Zealand,” says MSNZ spokesman Neil Woodhams. “This announcement is a really positive step forward for them.”

Access to the two new treatments comes on the back of access to Tysabri and Gilenya last year and extended access to older injectable treatments.

“This time last year PHARMAC extended the access criteria for Tysabri and Gilenya and we are seeing how that change is making a difference in people’s lives. We know from figures that PHARMAC has provided that 471 people with MS have been approved to receive Tysabri or Gilenya within the first 12 months of funding. We hope that the impact of access to Tecfidera and Aubagio will be just as positive.”

MSNZ made several other requests as part of its submission to PHARMAC in October, particularly regarding the overall entry and exit criteria for MS treatments.

“We are still concerned the overall entry and exit criteria are too tight,” says Mr Woodhams. “There needs to be some flexibility. New Zealand is the only country to have such stringent exit criteria under the Expanded Disability Status Scale (EDSS).

“Some people diagnosed with relapsing-remitting MS unfortunately experience a high number of relapses that produce disability in the long or medium term. In some instances a person may have attacks of the spinal cord that leave them with permanent disability in their movement. As per the EDSS scale this will put them over point that they can enter into treatment. However their poor recovery does not mean that they have a more progressive form of MS but are still considered relapsing-remitting.

Mr Woodhams says that there needs to be scope in the entry criteria to treat those with relapsing-remitting MS who have experienced severe relapses to the point that their recovery does not go below the currently defined entry mark.

“We remain concerned for patients who have had their first demyelinating episode (CIS) with proven MRI activity and demonstrable symptoms of MS and who would benefit from early treatment still have to wait for a significant relapse. We understand from PHARMACs feedback this would require a larger review in relation to budgets and risk/benefit analysis. Our concern is to ensure a person with MS does not have to experience disability from a relapse before they can access treatment.

“These treatments may still have an extremely positive effect on other factors affecting the persons MS. Significant disability in one area should not clinically make someone ineligible.”

In terms of eligibility, MSNZ is seeking reassurance from PHARMAC that these applications will still receive fair consideration.

“We would also value some clarification about whether applications would be accepted. PHARMAC have advised that applications can be made if circumstances are outside the criteria, however we would like more reassurance these will be fully considered.”

 

Criteria 

The full criteria under which the treatments will be funded and the announcement from PHARMAC can be read in full here:  "Notification on Decisions relating to Multiple Sclerosis Treatments - 4 December 2015"

 

Click here to open the full "Media release MSNZ welcomes PHARMAC's decision to fund two new first-line treatments for relapsing remitting forms of Multiple Sclerosis - 8 December 2014"

 

 

October 2015

Have your say!

PHARMAC Consultation on MS Treatments Aubagio and Tecfidera Now Open!


The Multiple Sclerosis Society of New Zealand (MSNZ) welcomes PHARMAC's release of a consultation document that proposes to list two new treatments for Multiple Sclerosis (MS) – dimethyl fumarate and teriflunomide and to make amendments to the Special Authority criteria relating to MRI requirements for all MS treatments.
In summary, the proposals would, from 1 February 2016 result in:

  • dimethyl fumarate (Tecfidera), supplied by Biogen NZ Biopharma Limited (“Biogen”); and
  • teriflunomide (Aubagio), supplied by Sanofi-Aventis New Zealand Limited (“Sanofi”)

 being funded in the community and in DHB hospitals subject to the same restrictions that apply to natalizumab (Tysabri) and fingolimod (Gilenya); and

  • changes to the Special Authority criteria for MS Treatments relating to MRI requirements, to ensure clarity and better reflect the intent of the criteria.

The proposed changes to the Special Authority criteria relating to MRI requirements are not dependent on the proposals to list dimethyl fumarate or teriflunomide.

Click here to download the Proposal Document from PHARMAC

Feedback sought

PHARMAC welcomes feedback on the proposals.

MSNZ is looking to make a submission on the proposal. If you would like to provide any feedback for consideration in the submission from MSNZ please email info@msnz.org.nz by Wednesday 4 November 2015. 

Alternatively to provide feedback personally, please submit it in writing by Friday, 6 November 2015 to:

Adrienne Martin
Senior Therapeutic Group Manager/Team Leader
PHARMAC
PO Box 10 254
Wellington 6143

Email: adrienne.martin@pharmac.govt.nz

Fax: 04 460 4995

 To read the submission submitted by MSNZ see the below link:

Submission from MSNZ - PHARMAC MS Treatments Consultation Document released on 16 October 2015

10 October 2014

PHARMAC'S ANNOUNCEMENT A POSITIVE STEP FORWARD FOR THE MS COMMUNITY

 

The Multiple Sclerosis Society of New Zealand (MSNZ) is delighted by PHARMAC’s announcement today that it will fund two new treatments for Multiple Sclerosis.

After years of funding submissions, culminating in a campaign this year led by MSNZ, PHARMAC has approved funding for two new treatments and increased access to those currently funded for New Zealander’s diagnosed with relapsing remitting forms of Multiple Sclerosis.

Biogen Idec’s Natalizumab (trading as Tysabri) and Novartis’ Fingolimod (Gilenya) will be funded from 1 November 2014. PHARMAC has also approved increased access to currently-funded treatments in today’s announcement.

“This is a big step forward for people with Multiple Sclerosis in New Zealand,” said MSNZ Vice President Neil Woodhams. “It means that many of those living with MS will no longer be subjected to a level of disability before their treatment is approved. This is momentous day for thousands of people living with a potentially manageable form of MS and their families. The majority of these people are young women, many of whom are mothers. Earlier access to treatments has shown to greatly reduce relapse rates and halt disease progression.

“New Zealanders have waited eight years longer than Australians to be able to access these treatments. If we can act quickly to support people with MS so that they can access the best first-line treatments then they can remain in the workplace, manage their own lives and care for their families. MSNZ’s campaign is based on an issue of fairness and equality of access. Access to treatment wherever you are in New Zealand is a democratic right.”

Strong concerns had been expressed to MSNZ that DHBs do not currently have the necessary access to resources to manage the changes these new treatments will bring about, says Woodhams. “Many of our DHBs are already understaffed. Canterbury DHB for example does not even have an in-hospital MS Nurse, despite having more than 400 people within its catchment area who are diagnosed with MS. “Nursing support is provided by our MS Society in the region, but this does come at a cost to the community and funding for these services is becoming increasingly hard to secure.”

“We are glad to see that PHARMAC have heeded our concerns and has not ignored the importance of the current treatments remaining available for use, appreciating a person’s individual clinical situation. This is particularly important for those out of the major cities where neurology services are limited. By also allowing general physicians to apply for MS treatments PHARMAC have taken a more person-centred approach making treatments more accessible and not restricted.

“It has been heart-breaking to hear repeated stories of people having to become disabled before they are approved for treatment. Thankfully we are now heading in a more positive direction.”

Further information about PHARMAC's decision, the criteria for funding and answers to questions made in submissions to the August Proposal can be found at http://www.pharmac.health.nz/news/notification-2014-10-10-mstreatments/

 

August 2014

Have your say!

PHARMAC Consultation on MS Treatments Open!

The Multiple Sclerosis Society of New Zealand (MSNZ) welcomes PHARMAC’s release of a consultation document on Thursday that proposes Natalizumab (Tysabri)and Fingolimod (Gilenya) as potential new first-line treatments for relapsing, remitting forms of MS.


PHARMAC is seeking feedback on a funding proposal involving five treatments for multiple sclerosis (MS), including these two new treatments. It is also seeking feedback on potential changes to the currently funded treatments Avonex, Betaferon and Copaxone.


In February, PTAC (the Pharmaceutical Technical Advisory Committee) recommended to PHARMAC that these new treatments be funded as new first-line treatments.


“It has been a long process to get to this point but PHARMAC’s announcement is a positive step,” says MSNZ spokesman Neil Woodhams. “Relapsing Remitting MS is one of four types of MS, affecting the highest percentage of patients. These new treatments, if accepted by PHARMAC, will be given as soon after diagnosis as possible, to patients fitting within the criteria. This is a great start for all those who will benefit from these treatments.”


Subject to a positive outcome from its consultation process, PHARMAC has suggested that Natalizumab and Fingolimod could be listed on the Hospital Medications List by 1 November 2014 and that changes to the restrictions around access to treatments that are currently funded could also be made by that date.


“This is not the end of the process,” says Mr Woodhams. “The next stage of consultation begins today. We recommend that interested parties read the consultation documents carefully as there are restrictions on the access to these treatments and changes that will be made to the currently-funded treatments.”

 Submissions on PHARMAC’s consultation document close on 29 August, 2014.


“MSNZ would like to thank everyone involved in the Patients’ Steering Group, the MS Community, neurologists and supporters who have helped to highlight the importance of funding these new first-line treatments. MSNZ has been overwhelmed with the support and commitment shown to date and we urge supporters to maintain their level of engagement during the next stage of the process and beyond.”


Consultation Documents


More information about the consultation documents:

For more information visit the PHARMAC website:

www.pharmac.health.nz/news/consultation-2014-08-07-mstreatments/


Details of the proposal, including proposed funding access criteria, and some background information can be found at:

www.pharmac.health.nz/assets/consultation-2014-08-07-mstreatments.pdf


Please note: The fingolimod component of this proposal is dependent on a multi-product provisional agreement with Novartis, for a number of other products including fingolimod, being approved. PHARMAC are consulting on the Novartis multiproduct proposal separately, see PHARMAC’s website at:


www.pharmac.health.nz/news/consultation-2014-08-07-multiproduct


www.pharmac.health.nz/assets/consultation-2014-08-07-multiproduct.pdf

May 2014

PATIENTS STEERING GROUP FOR MS DRUGS

MSNZ is aware that there is considerable interest and frustration in the non-availability of Government funded access to the MS treatments Tysabri (Natalizumab) and Gilenya (Fingolimod). MSNZ has written recently both to the Minister of Health and to Pharmac. Copies of that correspondence is enclosed. We are aware also that a number of individuals supported by their Neurologists have made their own submissions for funding to Pharmac without success.


To ensure that the very best case is put to the Government and Pharmac Neil Woodhams a member of the National committee and President of MS Auckland will coordinate a National response and to establish an steering group that will prepare suitable material for regions and individuals with in those regions for a cohesive approach.


We would be interested in the following:

  1. The names and email addresses of those who are interested in being part of this process
  2. Copies of any correspondence that may have been written to Pharmac, the Minister or local politicians and their replies
  3. Details of any verbal contact in respect of Tysabri that members have had with politicians Pharmac etc. 

To register your interest please contact MSNZ on 0800 MS LINE (67 54 63) or email info@msnz.org.nz with the subject MS Patients Steering Group.

May 2014

How can you make a stand for the funding of new MS medications in NZ?

Dear Member or Friend of the MS Community


The Patients Steering Group for MS Drugs has been established to advocate for the public funding of MS drugs. Neil Woodhams, President of MS Auckland, is leading the group with assistance of interested participants, now listed as 24 as at 20 May, who seek to have Tysabri (Natalizumab) and Gilenya (Fingolimod) treatments publically funded. 

 

MS patients in New Zealand want and deserve an adequate standard of publically funded treatment and more transparency from PHARMAC on how it determines and budgets for its funding priorities for MS medications and treatments.  

 

The MS community needs to hold both PHARMAC and our elected politicians to whom it reports to account. We seek your assistance to secure access to what are widely acknowledged as the best first line treatments for MS patients and to make the treatments available to all who would benefit from them.


As a first step we would encourage you, your family, and your friends to print off the following letter (Attachment 3) and send it to the Prime Minister, the Minister of Health the Chairman of PHARMAC and the Chief Executive of PHARMAC (Attachment 4 and 5) and to your local politicians. We encourage you to send them as many funding request letters as you are able. Please note that there are no postage costs for letters addressed to Parliament.

NB: This letter is a template for you to use. You can also write a personal letter if you so wish.

 

Resources

-   Letter explaining the current status of the Patients Steering Group for MS Drugs (this is for your information and is not the letter to be send to your MP)

-   Letter for individuals to send to their local MP, PHARMAC, Minister of Health and Prime Minister

-   Addresses for Key Politicians and Decision Makers

-   Names and Contacts of all current NZ MPs

-   The key facts about MS Drugs

-   Campbell Live Segment on Pharmac funding battle for MS Medication - Friday 30 May 2014