Multiple Sclerosis information day
20 July 2001
Speech Notes - Hon Annette King
Multiple Sclerosis information day
Good afternoon, and thank you for your invitation to speak today. It is good to see a number of familiar faces here.
I just flew in this morning from the Chathams, the remotest part of my Rongotai electorate. I always enjoy visiting the Chathams, but given the difficulties I sometimes experience getting to and from there, I am particularly pleased to be here on schedule today.
I welcome this opportunity to acknowledge the work and efforts of MS Society members, past and present. Many people diagnosed with Multiple Sclerosis have greatly benefited from the services provided by the Society, which has also provided invaluable social activities and practical assistance.
Today's event is an important step in further investigation of the role of early treatment of people with MS with disease modifying therapies. I am sure it will make a constructive contribution to the debate about this approach.
I hope that current research, which many of you are involved in, will finally unlock the secrets of the mechanics of the early phase of this disease.
My role as Minister exposes me to information about a range of conditions and disabilities, and how they impact on the quality of life of afflicted individuals.
I never forget, however, that apparently abstract facts and figures can hide the reality of numerous personal tragedies and struggles.
I believe today's event offers real opportunities by bringing so many experts, practitioners, health officials and people with MS together in the one place. It provides an opportunity to share ideas and keep up to date with recent developments. The treatment of MS is a quickly developing field of research. Keeping up is certainly not easy.
I am no expert, of course, but even a quick look through the literature shows there is a wide range of research underway.
No doubt everyone is aware of the AgResearch study of cattle with a modified genetic code containing the human myelin protein, and the promise this may hold for the treatment of MS in the long-term. While I don't propose to examine the efficacy of that study here, it is clearly an important illustration of how the field of MS research is spawning new ideas and approaches.
I am also advised of encouraging developments in studies about the potential for human stem cells to help treat MS, and of similarly encouraging results in trials of new drugs such as Fampridine.
As a mother I was also interested to read about the possibility of a link between pregnancy and the high incidence of MS among women. The possibility that MS may somehow be triggered by the presence of the tissue from an unborn baby that remains in a mother's bloodstream for decades after birth is intriguing. It might mean that auto-immune diseases such as MS may not entirely be caused by the body turning on itself.
Current research into the long-established link between the latitude where people live and the incidence of MS is also producing interesting findings. To read that part of the explanation may lie in exposure to ultraviolet B radiation, and the synthesis of Vitamin D that engenders, seems an appealing simple idea.
When I visited the United Kingdom in May I had discussions with the Department of Health on three clinical trials being conducted there using cannaboid derivatives to reduce pain and tremors experienced by MS sufferers. The results of these trials will become available in 2003 and 2004, and I look forward to what they have to tell us.
I say us modestly, of course. I realise that explanations are rarely simple in neurology and leave interpretations to the experts - you.
Indeed, there are ultimately no easy answers to treating MS on both the clinical and funding fronts. Finding a financially sustainable and cost effective way of reducing the incidence and impact of MS is not going to be easy.
Funding is clearly a pressing issue, but, as I am sure you are aware, calls for extra funding for MS research and treatments must compete against many other pressing demands on our tax dollars.
Any request for funding must be watertight. It must be possible to prove a new drug or service has unambiguous clinical benefits and is more cost effective than other health spending priorities.
In light of the continuing uncertainties about the downstream effectiveness of beta-interferon, I do not envisage any change in the basic approach to funding at this time.
When I instructed Pharmac in December 1999 to provide funding for beta-interferon, it was agreed a review should take place one year after treatment began.
Initially, in December, 1999, it was believed that 130 patients would benefit particularly from receiving the drug, which costs about $18,000 a year per patient. But by the time funding began in June last year, 180 patients met the clinical eligibility criteria developed in consultation with New Zealand neurologists.
Pharmac established an independent committee of neurologists, the MS Treatment Assessment Committee, to use the criteria to determine which patients were eligible.
Pharmac is talking to you later today, but my understanding is that the MS Treatment Assessment Committee is required to report annually to Pharmac on its activities, and to put forward any recommendations it deems necessary in terms of Pharmac's policies on beta-interferon.
Those recommendations could cover a wide range, including amendments to the current access criteria, based either on new evidence or on their experience of the first year of the current treatment programme.
That first report is now due. If the committee puts forward any recommendation to widen access to beta-interferon, Pharmac's role will be to assess and prioritise any amendments to the criteria.
It will have to do so, however, within the context of all other funding proposals it has to consider, and within the overall budget it has available to it. There will need to be a fundamental shift in the balance of clinical evidence before there can be any increase in the current funding programme.
I know our initial funding for beta-interferon gladdened many sufferers who had been unable to fund the drug themselves, but I am also aware we have been unable to provide funding to the level that many in the MS sector would like. The Government has helped New Zealanders living with MS in other ways, however.
The best example of this is the New Zealand Disability Strategy. Our vision is to provide the means to empower people with disabilities to overcome the barriers to their full participation in society, whatever their age or condition.
These are not empty words. In the foreseeable future there will continue to be many New Zealanders with MS who have to deal with the reality of living as a disabled person. They will be living in a society that continues to place barriers in the way of disabled people realising their full potential.
I congratulate you on your initiative in organising today's event, and I welcome further debate it has initiated about the role of early treatment of MS by disease modifying therapies.
The Government wants to support the prevention and treatment of MS, but must deal each day with the unavoidable and often gruelling reality of competing demands on the health dollar.
I wish you well for your remaining discussions and future work, and hope many of you can attend the Multiple Sclerosis International Federation Conference in Melbourne in October. This conference will also be an important event in raising the profile of MS.
I have appreciated speaking with you today, and I share your hope for a better future for all MS sufferers. Thank you for inviting me.