NZORD Newsletter 2014 #3 - 6 June 2014

Hello everyone,

In this issue:1 - Pharmac finally replies to our letter, 8 months later.
2 - Progress on contestable fund for drugs for rare disorders.3 - Bakers’ dismal efforts mean more dead and seriously disabled babies.4 - Carer payments debacle continues, and gets worse.5 - NZORD has a meeting room available in Wellington for hire.6 - Some good news to finish with.********************************************************************************

1 – Pharmac finally replies to our letter, 8 months later.NZORD sent a letter to Pharmac in September 2013 about matters we believed they were obliged to take into account in their decision process. We made similar submissions on a number of policy consultations Pharmac have been engaged in around that time. We know some issues need careful consideration, but we were surprised it took them 8 months to actually reply, and even then only after a reminder.

But the content of their letter is even more concerning. In Pharmac’s reply they say they do not consider themselves to be bound by the objectives of District Health Boards when acting as their agents in setting the schedule of subsidised medicines. This highlights one of several ways in which Pharmac has removed mention of equity, ethics or community values from its policy documents, and retreated into a narrow focus on cost utility analysis and budget management. Read a summary prepared by NZORD about how Pharmac has done this. We think this is an alarming trend that is completely at odds with the need for sound ethical practice and decision making within our entire health system. Pharmac must not be exempt from that.

2 – Progress on contestable fund for drugs for rare disorders.When Pharmac released its proposal for a new contestable fund for drugs for rare disorders, in the same week that their proposed new decision framework was put out for consultation, NZORD responded with a press release that challenged their approach on both these topics. Days later their workshop on their decision criteria consultation was dominated by discussion about access to medicines for rare disorders.

NZORD is pleased to note that some of our challenges regarding this proposed special fund have been positively responded to. Pharmac have confirmed they will issue a formal consultation document after the initial feedback is in, thus lifting the proposal from a simply informal communication into a formal policy proposal. Pharmac have also made a firm commitment to us that a Request for Proposals will be issued later this year, thus allying our fears that their proposal was simply a dampener on the issue in the election period. While we see a number of significant problems with the proposal, we are pleased that our advocacy has resulted in these shifts. We are currently preparing our ideas on how their proposal, despite its significant limitations, could be implemented in a way that delivers specialised medicines to those most in need, in the first instance.

3 – Bakers’ dismal efforts mean more dead and seriously disabled babies.When the government stopped the planned mandatory fortification of bread with Folic Acid to prevent neural tube defects, and instead agreed that bakers would be able to voluntarily fortify their products, the Prime Minister said he “expected them to deliver” on their intention to produce an effective voluntary fortification programme. The figures are out now and the report from the Baking Industry Research Trust shows a very sorry effort. Bread fortified at the end of 2013 showed no increase on the previous year’s level and at 14.4% of packaged and sliced bread, was tracking way below the Bakers’ target of 25% by the end of 2014 and 50% by the end of 2016. Data also suggests a decline in the past 2 years in the overall % of all bread by volume which is fortified. Extrapolating from the Bakers’ report it appears just under 13% of all bread by volume is now fortified, compared to the 17% estimate from 2012 (Ministry for Primary Industries Cabinet Paper 2012).

It is distressing that these results equate to missed opportunities to prevent death and serious disability in NZ babies.  Each year there are about 80 pregnancies in New Zealand affected by neural tube defects. Precise figures on the level of NTD prevention resulting from Folic Acid fortification are debated, but there is consensus that we could prevent at least 24 cases each year (MPI Cabinet Paper 2012) and more optimistic projections (Paediatric Society of NZ and Centers for Disease Control and Prevention) of perhaps 53 fewer cases each year if we had a top quality fortification programme in place. Figures from the Bakers’ own report, measured against MPI analysis, shows the Bakers efforts to date have most likely prevented only about 3 or 4 cases in 2013.

At the rate of 80 cases per year, or 12.4 NTD affected cases per 10,000 pregnancies, New Zealand has an epidemic of NTDs. It is time for urgent action by government to take this public health responsibility back from the Bakers and ensure a sound programme is put in place to protect the health of these most vulnerable babies.

4 – Carer payments debacle continues, and gets worse.NZORD joined with many groups in the NZ Carers Alliance to roundly criticise the carer payments policy brought in with a $23 million provision in the 2013 budget. Click here for our release at the time. Now, six months of implementation of that policy shows it has been a spectacular failure, with only about 100 care arrangements attracting payments under this scheme, compared to about 1600 intended. We predicted the policy would be unfair and wouldn’t work well, but even we were shocked and dismayed at the unmitigated disaster that has resulted.

Complicated criteria is much to blame, including a requirement for the person cared for having to be the employer, usually of their mother. This is an impossible barrier for those with severe intellectual disability, yet they were the majority of cases targeted within the 1600 cases intended to be funded. The policy requires a major overhaul to make it realistic and workable. Above all, the insistence on standard employment relationship between a parent and their adult child, is completely inappropriate. Standard employment law has no place within these family care situations.

5 – NZORD has a meeting room available in Wellington for hire.NZORD has a separate meeting room that is available at very reasonable rates for rare disease groups wanting a meeting place in Wellington city. The room has a meeting table that can seat up to 10 people comfortably (12 at a squeeze), a small kitchen to prepare hot drinks and snacks, and enough space in the room (8m x 6m) to spread out for working sessions and small groups. The room also comes with an electronic whiteboard, printer and a data projector.  Bookings can be made for weekday, evening or weekend use. There is plenty of nearby parking for evenings and weekends, but parking is tight during normal office hours. Enquiries are welcome, call us on 04 471 2225.

6 – Some good news to finish with.You may have seen our Facebook posting or read on Stuff about the achievements of siblings Joseph and Therese Boon, who graduated from Victoria University recently.  Both Joseph and Therese have the rare genetic condition Friedreich’s Ataxia, which affects the nervous system and restricts their motor skills from walking to note taking.  To read more on this impressive duo click here.

Edited by Lyndal Bremer and John Forman