Announcement: PHARMAC consultation: proposal to widen access and transition the process for funded access to multiple sclerosis treatments

Pharmac have released public consultation on a proposal to widen access to funded multiple sclerosis treatments and transition access from the Multiple Sclerosis Treatment Assessment Committee (MSTAC) Panel to a standard Special Authority.

Please follow this link to read the proposal and recommended changes to the Special Authority for access.

Your Feedback is Important

Pharmac are asking for feedback on this proposal.

Consultation closes 4pm Friday 18 December and feedback can be emailed to mstaccoordinator@pharmac.govt.nz.

Alternatively Multiple Sclerosis NZ are seeking testimonials from people who will be impacted by the proposed changes to include in our submission. If you would like to be included in this please send your testamonial to amanda@msnz.org.nz. Thank you.

Please feel free to circulate this to others who may be interested.

Media Release from Multiple Sclerosis New Zealand – 27 November 2020

No More Dreaded 500 Metre ‘Walk of Shame’ For Kiwis With MS?

A six year battle to allow multiple sclerosis patients continued access to vital funded drug treatments may soon be over, with news that Pharmac is finally considering extending its points-based system for patients with more developed disease.

“After years of persistent lobbying to remove a rigid and non-evidence based treatment barrier, this is welcome news for many of the 4000 New Zealanders living with multiple sclerosis” says Multiple Sclerosis New Zealand (MSNZ) President Neil Woodhams. “If adopted, patients will be allowed to continue accessing MS treatments that are clinically proven to delay or stop progression for far longer than is currently the case”.

Pharmac has now issued a consultation document seeking feedback on a proposal to allow patients to remain on MS treatments until they progress past a score of 6 out of 10 on the Expanded Disability Status Scale (EDSS) used for measuring disability. The changes, if adopted, will take effect from March 1st next year. Currently, all patients have their drug access stopped automatically if their EDSS score either increases by more than 2 points or exceeds 4.5 points and shows no sign of improvement within six months.

As things stand right now, being granted continued access to their drugs requires patients to perform a 500-metre walking test, unaided and without stopping, at their annual clinical review– a stressful ordeal, dreaded by many patients. This new Pharmac proposal, if passed, would dramatically reduce the total walking distance required from 500m down to 100m, allow for use of walking aids, and can be done up to 6 months before their annual renewal date. While MSNZ would like to see other factors considered when assessing treatment benefit, such as improved or stabilised fatigue and cognition, it accepts that this reduced walking distance would be a significant improvement for patients.

“The current outdated and prescriptive Pharmac walking criteria have cruelly and prematurely cut many Kiwi patients adrift from continued access to beneficial treatments” says Woodhams. “The physical and emotional toll of this has left many feeling abandoned with nowhere left to turn, at a time when they need those treatments most and are still benefitting greatly from them. The current annual 500m ‘walk of shame’ is an ordeal one world-leading neurologist has described as ‘inhumane’. The pressure of having to complete it has left MS patients distraught, fearful and tearful for far too long. It’s high time it was ditched”.

The Pharmac proposal is also seeking feedback on the potential removal of the Multiple Sclerosis Treatment Assessment Committee (MSTAC). This means that treatments would be available on special authority issue by a neurologist or general physician, provided that the patient has MS in accordance with current disease definitions. This will dramatically speed up the process for earlier treatment access, taking pressure off the country’s under-resourced neurologist workforce who are currently bogged down with the bureaucracy of the current system. The changes would also mean that some people who have stopped treatment too early will be able to again access it, as long as they fit the new criteria.

MSNZ is still very disappointed and concerned patients will continue to be denied or delayed in starting these treatments until they have a second MS episode. This has been described by one health professional as “asking a stroke patient to have a second stroke before being treated”.

“Patients with early-stage, clinically definite MS still won’t be able to get timely access to treatments until it can be proven they’ve had a second ‘attack’ or episode of symptoms” says Woodhams. “Insisting on a second ‘attack’ risks some patients suffering permanent serious disability before therapies are made available to them – disability they may never recover from. Pharmac must now adopt the internationally-accepted 2017 McDonald Criteria which many other countries follow, allowing an MS diagnosis based on other clinical factors. There’s credible research that MS treatments work best when they’re prescribed to patients as soon as they are diagnosed to improve long-term brain outcomes, yet Pharmac appears reluctant to acknowledge the international evidence around this”.

MSNZ is also seeking clarification from Pharmac that no MS patients currently nearing the current stopping criteria or due for their annual review between now and March 1st next year will risk their treatment being stopped while the proposal is under consultation.

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Andrew Cushen

Trustee

Andrew is an independent corporate affairs and strategy consultant, working and living in Auckland. He has previously held senior positions in a number of corporate and not-for-profit entities in New Zealand.

Across his career, Andrew has worked as a funder of research projects (albeit in different areas than medicine and health), served in a number of not-for-profit governance roles, and been successful in developing and implementing collaborative funding models to extend investment in research and community programmes.

Andrew’s interest in Multiple Sclerosis stems from his father’s diagnosis with progressive MS in the early 2000s, and he is keenly interested in research, treatment and management approaches that may lessen the impact of MS on those diagnosed and their families.

Julia Howell

Trustee

Julia is a qualified nurse and midwife, with a varied career including specialising in eating disorders, primary healthcare, and management.    

Julia, in partnership with a GP, set up an outpatient clinical trials unit (Southern Clinical Trials). Under her leadership this grew into a network of 6 sites across NZ. This network merged with another one in 2021 to form PCRN, NZ’s largest clinical trials network. Julia is currently working as joint COO for PCRN.

Julia’s daughter was diagnosed with MS aged 14 and she has been intimately involved with her management over the years.

 

Jan Campbell

Trustee

Born in Ōtautahi Jan trained as a nurse in Christchurch, as a midwife in Winchester, UK and has a degree in philosophy with particular interest in healthcare and business ethics.

After working in the public health system in the UK and NZ, Jan joined Roche Pharmaceuticals based in Auckland in 1999. As a respected senior leader and Medical Director, she established a medical division over the ensuing 20 years responsible for significant investment in clinical trials in NZ, developing a top-class global medicine information service, compassionate medicine supply for kiwis in need, pharmacovigilance oversight and a team working closely with patients, specialists, MEDSAFE and PHARMAC to support the safe and appropriate use of Roche medicines.

As a retiree Jan has volunteered for Mercy Hospice in Auckland and the WBoP Museum in Katikati. Now living in Ōtepoti, Jan sits on both the MS Research Trust and MSNZ executive committees with a keen interest to ensure people with MS get a fair go in NZ.

Dr Elza Cloete

Trustee

Elza is a Neonatal Paediatrician at Christchurch Women’s Hospital. Originally from South Africa, she moved to New Zealand in 2006 and completed her specialist training in Auckland.

Subsequent to that she embarked on doctoral studies at the University of Auckland’s Liggins Institute and obtained a PhD investigating congenital heart disease in new-born babies.

Elza received the Vice-Chancellor’s award for best doctoral thesis for her research and is the author of several research publications. She moved to Christchurch in 2020 for a work opportunity in clinical practice.

Elza was diagnosed with MS in 2012 and brings a consumer perspective and research experience to the Trust.

Dr Ernie Willoughby

Trustee

Dr Willoughby has been a consultant neurologist at Auckland City Hospital (1979 to 2021 – now retired, emeritus) and clinical associate professor at Auckland University School of Medicine.

He directed the MS clinic at Auckland Hospital, has had a long association with the Auckland and NZ MS Societies, and is a member of the International Medical and Scientific Board of the MS International Federation.

Dr Brian Linehan

Independent Trustee

Dr Brian Linehan is a retired pathologist who was previously Managing Director of Medlab Hamilton.

He is currently Chairman of the Tranmere group of investment companies and a Director of a number of other private companies. In 2014, he retired after 12 years on the Council of the University of Waikato where he was Pro-Chancellor.

He is a past Chairman of the New Zealand Medical Association, past Chairman of NZMA Ethics Committee, past President and Chairman of CMAAO (Combined Medical Associations of Asia and Oceania) and past Chairman of IANZ (International Accreditation NZ).

Brian was diagnosed with MS in 2007 but is still active and mobile.

Peter Wood - JP, BCom, AGNZ, ACIS, FNZTA

Treasurer

Peter gained his commerce degree at Victoria University of Wellington and has been practising as a Chartered Accountant initially in Wellington and then in Tauranga.

Peter was a respected and trusted advisor to many businesspeople.
He is now resident in Auckland and consultants to a limited number business clients.

He has also served his community through involvement with Jaycees, Lions and Rotary clubs and a number of charitable trusts.

Peter is currently the Treasurer of Multiple Sclerosis Auckland and a trustee of the Multiple Sclerosis Auckland Trust. Peter is a Justice of the Peace and a member Governance New Zealand and is a Fellow of the NZ Trustees’ Association.

Neil Woodhams

Trustee

Neil is an independent health management consultant who has had an extensive career in health management as a senior manager or consultant to government, DHBs, primary care and community providers. 

Neil is President of MS New Zealand and a trustee of the MS Auckland Region Trust. Neil was also President of MS Auckland until he stepped down from this role mid-2020 to concentrate on his national roles.

Neil’s wife was diagnosed with MS in 1994. One of his four sons was also diagnosed in 2010.

Neil strongly believes in the objectives of the NZ Multiple Sclerosis Research Trust and has advocated for the establishment of the Trust for over 10 years.

Sir William Gallagher

Trustee

Sir William is renowned as a motivational, pragmatic and hands-on businessman in and outside of New Zealand and has a reputation both as a dynamic leader and one of NZ’s most astute businessmen.

Still very involved in the daily operation, he maintains regular contact with customers in the 130 countries in which Gallagher products are sold spending up to 150 days a year on the road representing the company and its philosophies and emphasising the ethics and integrity of his professional and personal dealings.

His achievements have been officially recognised by a string of awards, the latest to mark his commitment to enterprise and leadership skills being his Knighthood in the 2010 New Year’s Honours List. He was also the 1996 winner of the prestigious Excellence in Communication Leadership award, the first time in its history that it had been awarded outside of North America. He also received an MBE in 1987 followed by a Companion of the New Zealand Order of Merit (CNZM) in 1998.

Sir William Gallagher - KNZM, MBE. HonD

Patron

Sir William is renowned as a motivational, pragmatic and hands-on businessman in and outside of New Zealand and has a reputation both as a dynamic leader and one of NZ’s most astute businessmen.

Still very involved in the daily operation, he maintains regular contact with customers in the 130 countries in which Gallagher products are sold spending up to 150 days a year on the road representing the company and its philosophies and emphasising the ethics and integrity of his professional and personal dealings.

His achievements have been officially recognised by a string of awards, the latest to mark his commitment to enterprise and leadership skills being his Knighthood in the 2010 New Year’s Honours List. He was also the 1996 winner of the prestigious Excellence in Communication Leadership award, the first time in its history that it had been awarded outside of North America. He also received an MBE in 1987 followed by a Companion of the New Zealand Order of Merit (CNZM) in 1998.