Dr Lisa Stamp is a member of the Governing Body of Arthritis New Zealand and is an Associate Professor based at the Christchurch School of Medicine and Health Sciences. Dr Stamp was asked to speak at last year’s Arthritis New Zealand National Award’s dinner, following are extracts from her insightful speech:

“It was quite a struggle to decide what to talk about – because there have been many new developments recently in the field of rheumatology.

The development of new drugs is exciting, it has bought its own challenges.

By virtue of their nature – being what we call biological drugs, their development and getting them to market has been hugely expensive. This means the cost of the drug for each patient is high in dollar terms. While Pharmac, has funded a couple of these drugs it has not been without a fight. I clearly remember shortly after arriving back in New Zealand in 2004, treating a young girl with aggressive juvenile idiopathic arthritis (JIA). Her father, Richard, an ex-policeman stood over me on one occasion demanding to know why his daughter could not have access to the latest and best treatment available. I was quite intimidated at the time – he seemed to stand very close and be very angry!

As a doctor this is one of the worst situations to find yourself in – knowing something is being denied simply because of money. Luckily a new biologic agent was funded for children with arthritis and then it was only a matter of time before his daughter could access it. Luckily for adults with arthritis, Richard and Adrienne were not satisfied with the fact that only children had access and began advocating for access for these drugs for all ages. This “advocacy” included a ‘sit-in’ at the Ministry of Health building in Christchurch, and an application to the Human Rights Commission that limiting access on the basis of age was discriminatory.

At the same time the New Zealand Rheumatology Association and Arthritis New Zealand were also actively trying to get these new agents funded for adults with arthritis – but seemingly beating our heads against a brick wall. But such was the power of the patient advocate group that the head of Pharmac Peter Moodie, flew to Christchurch specifically to meet with them.

The patient voice is one of the most powerful tools and it is not to be underestimated. However being heard is going to be an ongoing challenge for us and our patients with the increasing number of new high cost medicines available.

New Zealand has also gained an international reputation in rheumatology research. New Zealand’s contribution in the field of genetics in gout and RA, as well as the underlying mechanisms and treatment of these conditions, is internationally recognised. Funding for research remains a challenge and the ongoing commitment by Arthritis New Zealand is welcomed.

Of course no research would take place without the assistance of patients. Recently we undertook a new study which required patients to spend three half days in the hospital, have multiple blood, collect all and I mean all of their urine and take something that makes you wee a lot. When I explained this to Jill, the research nurse, she rolled her eyes at me, and said how am I ever going to find anyone prepared to do that! My response was you will be surprised - although secretly I had my doubts and had all my fingers and toes crossed.

Nevertheless Jill did find the required number of patients relatively easily. Patient’s commitment never ceases to astound me – now you all know we had a little earthquake here on 4th September. As it happened that was the last day of the study and we had two patients due at the hospital at 8am for their final blood test of the three days - it was critically important – not getting it meant we would have to repeat the whole three days. I rang Jill at 7am and we decided we had to go into the hospital just in case they turned up.

We sat there and at 8.15am the first patient walked in having driven from Redcliffs – stating he considered not coming but thought “gout research must go on” and hopped in his car. The second patient turned up ½ hour later with his daughter – he hadn’t been able to open his garage door after the quake so had walked several blocks to his daughter’s house and asked her to bring him in. There is no doubt that this commitment from patients is inspiring and makes my job as a researcher much easier.

While there are a number of good things there are of course, ongoing challenges. We have currently 17 junior doctors training to be rheumatologists. Where they will find jobs in NZ is unknown – we are still understaffed in rheumatology in most areas on a population basis but funding for new rheumatology posts is limited. These are challenging financial times and for Arthritis New Zealand, along with other charitable organisations, fundraising remains an ongoing issue. Like many organisations, the financial times have bought a review of services. Arthritis New Zealand provides important services for patients with arthritis - the challenge is how to provide the best service to its clients including those in more remote areas, and in the internet age, when many are older and not used to the technology.

For me, the biggest and most important challenge for Arthritis New Zealand is to raise the public profile both of the organisation and people with arthritis. Many in the public consider arthritis to be aches and pains that everyone gets so what’s the big deal…we all know that’s not true and we need to work harder to educate the public to that effect. Unfortunately we don’t have the heart sting pulling of dying of cancer or heart disease – the challenge is to find the message that drives home how common and how serious arthritis is so it gets the attention it deserves both from health funding authorities, the public and donors.

I would like to see a more visible Arthritis New Zealand, more drugs funded for my patients, more rheumatology research in NZ – but all of that takes money.

Thanks

Dr Lisa Stamp