Two dozen rare disease patients and their advocates will front up to talk to Pharmac directly on Tuesday 15 April in Wellington. The drug buying agency is hosting a half day consultation meeting to discuss proposed changes to their decision criteria, and the patients’ attendance is being coordinated by NZORD, the NZ Organisation for Rare Disorders, working with advocacy groups for Muscular Dystrophy, Cystic Fibrosis, Lysosomal diseases and the blood disorder PNH.
They accuse Pharmac of failing to listen to the patients’ and advocates’ concerns, and welcome the opportunity to address Pharmac in person about their issues with the proposed decision criteria.
NZORD Executive Director John Forman says that over the years patients have found it extremely difficult getting their voices heard. There have been many submissions put to Pharmac which have been ignored. One example is when 98% of the submissions for the drug Soliris advocated the drug should be funded, Pharmac went ahead and declined the funding anyway.
Forman says that the most fundamental disagreement these groups have with Pharmac, is the drug funder’s narrow view of best health outcome and budget management coupled with their refusal to incorporate the right to health, equity considerations, and community values into their decision making. “The result is a group of mostly health economists acting as technocrats without a sound moral framework to guide them.”
NZORD says that Pharmac need to soften their hard line of sticking primarily to economic factors as that approach contradicts so many important documents such as the guidance of International Covenants, NZ’s Public Health and Disability Act, the NZ Medicines Strategy, and the moral frameworks that are central to our health system.
“It is very concerning to see the way in which Pharmac has surreptitiously stripped reference to moral considerations, such as equity and ethics, out of its policy documents over the past 7 or 8 years, despite those phrases being strongly represented in the legislation and other guidance documents,” says Forman.
“The proposed new version of their decision criteria is the most extreme yet. It strips all consideration of these moral factors right out of Pharmac’s policy framework. The last thing we need in New Zealand is a repeat of the late 19th and early 20th century situations where decisions were made in health, social policy and research without sound moral and ethical guidance, resulting in serious and systemic abuse of patients’ rights. But that is where we are heading, with Pharmac’s current policy direction,” he says.
“Fortunately there is now strong and growing support from most political parties and a variety of academics in support of NZORD’s call for a systems change. We want the establishment of an Orphan Drugs Access programme to provide equitable access to treatments for those with rare disorders, with that programme managed away from Pharmac.” say Forman.
Responding to last Tuesday’s release from Pharmac of a discussion document on High Cost Treatment for Rare Disorders, Forman says the groups are pleased to see their advocacy potentially now influencing policy. “But we are highly suspicious that this is a diversionary measure to try and close down the debate in the lead up to the election, as happened in the 2008 campaign where a review of the exceptional circumstances scheme was offered as a possible solution for funding of these drugs, but did not result in any significant change for rare disease patients.”
“Close reading of Pharmac’s latest proposal shows it is most unlikely to be a workable scheme. Pharmac have suggested a hopelessly inadequate budget for the scheme, and also intend that it should operate within their current framework, but that is impossibly contradictory,” says Forman.
The groups insist Pharmac’s proposed system will not be workable, and this conclusion adds to the suspicion about why this is being proposed in its current form as a “think-piece” for comment, rather than as a serious policy proposal for consultation.
“We suspect,” says Forman, “that they also know it is completely unworkable but are doing this for political expediency in an election year”.
“The patient advocacy groups are convinced that the long term solution is a system change involving an orphan drugs access programme with a realistic budget, administered away from Pharmac, and we have support for our proposal from most political parties. But until it becomes possible for that policy to be implemented we have to continue to influence Pharmac as best we can.” says Forman.