A National PID Service?
A National PID Service?
Recently a group of our immunologists and scientists published a paper in the NZ Medical Association's Journal advocating the case for a national service for PID patients throughout the country.
(The entire paper is available to view on our website Here! , under "PID Education!)
For those living in a main centre with access to local immunologists, you have no idea how fortunate you are!!
Many PID patients in smaller centres have never seen an immunologist, and those fortunate enough to have a referral must travel quite a distance in order to be evaluated. Follow up is difficult, as it involves taking time off work or school to return. Many patients are "lost" from the system when they move from one District Health Board to another. Consistent care and follow up are unavailable to these people with known rare disorders.
In fact, as this paper shows, there is "a serious maldistribution of clinical immunologists" in New Zealand. Christchurch and Wellington together have two adult immunologists, and a part time paediatric allergist works in Wellington. Otherwise, ALL the others are employed in Auckland. While some immunology outreach clinics are held in other centres, these are not widespread.
Assoc. Professor Rohan Ameratunga and his colleagues are proposing a service which would offer:
1) a seamless transition from paediatric to adult services,
2) regular immunology clinics in regional centres,
3) improvement and consistency of care throughout all DHBs [including availability of genetic testing], and
4) cost savings, particularly to the smaller DHBs.
The idea has been mooted for many years, but the catalyst now is a recent audit undertaken by the NZ Blood Service of SCIG/IVIG use. "The majority of symptomatic PID patients require lifelong immunoglobulin replacement." However, this comes at a cost of more than $1M over a lifetime, and is funded by local DHBs.
The audit of 10 DHBs showed that the criteria for SCIG/IVIG use are not consistent when adult PID and non-haematological secondary immunodeficient patients have NOT been seen by an immunologist.
This benefit has been shown recently, for instance, when an adult patient with a "transient" deficiency of "infancy" was able to discontinue long term IVIG (and remain well) after being reviewed by an immunologist. What a relief to learn that monthly infusions were no longer necessary for good health!
Immunologists are also qualified to prescribe alternative immunoglobulin product for a specific patient, when necessary. Allergies to antibiotics, chronic sinus disease and other issues make regular and uniform clinical care desirable for all patients.
While there would be additional costs to set up and maintain a national PID service, the authors have calculated that "$6M of immunoglobulin prescriptions per year may not comply with UK or Australian guidelines". The financial and patient care benefits would be major.
The NZ Blood Service strongly supports such a new service. One reason (beyond being more equitable) for this is the high increase in the use of SCIG/IVIG in recent years. Sadly, "New Zealand is no longer self sufficient in the production of SCIG/IVIG". This requires NZBS to import product, at significant cost for non PID patients.
While there are downsides to a national PID service, such as requiring immunologists to travel to regional centres regularly, and extra new immunology positions required in Wellington, Christchurch and Auckland, there are upsides, as well. Reduced hospitalisation costs and upskilling of regional providers working alongside the immunologists at clinics are clear benefits.
We are grateful to our immunologists and the NZBS for examining the issues of blood product usage and access to immunology care throughout the country. It will be of great interest to see where all this leads.
What do YOU think????
When the concept of a National PID service is presented to the Minister of Health, IDFNZ membership agreement or disagreement would be a factor in the considerations.
Please take one minute now to email us at email@example.com or go online on our website www.idfnz.org.nz and let us know the following:
....... YES, I support a National PID Service
....... NO, I do not support a National PID Service
....... I am uncertain at this time
That's all! Of course, if you have extra thoughts you'd like to share, feel free to do so. Perhaps there are specific challenges you are facing accessing treatment in your area of New Zealand?
We value the feedback of our members. Your wellbeing is our goal.