There is hope in the pipeline for those affected with Rare Diseases and Disorders such as myself going forward.
It’s been a busy start to the month for those interested in Health Reforms & policies here in NZ, as the Health Minister Andrew Little announced this week that the Government has urged the drug funding agency Pharmac to focus on equity and collaboration.
According to an article on Radio New Zealand’s (RNZ) website Andrew Little said that “the government had agreed in principle with most of the 33 recommendations put forward by a panel of independent experts” who were tasked with doing an in-depth review on Pharmac.
He went on to say that, “Pharmac will need to engage more with other parts of the health system and the public” and that “a strategy for rare disorders also needed to be developed“. But the strategy was to be the Ministry of Health’s responsibility with Pharmac’s involvement, “so we will fundamentally change the way we approach rare disorders“.
This is potentially welcome news for those like myself who suffer with a rare disease or disorder where funding for medications that have been proven overseas to work are limited due to cost and accessibility issues, or are only available for certain conditions and not others.
However, radical action is needed urgently to tackle the delays patients face in getting the latest drugs for a raft of diseases and conditions, health advocates say, after the review found “deficiencies” in its decision-making.
In another article from RNZ, a woman who had her bowel removed while she waited for drugs that would probably have prevented her from having major surgery hopes the Pharmac review will mean others don’t have to suffer the same fate as her.
The final report (which is available here) calls for Pharmac to develop an updated medicines’ strategy over the next year and ensure it is assessing whether it funds medicines using an equity approach.
Overall the review painted a devastating picture of a decision-making process failing Māori, Pacific and disabled patients and those with rare disorders.
But advocates say Pharmac can’t begin to address its shortfalls while its mandate remains to get the best health outcomes for eligible people within its budget.
Cancer and Rare Disorder advocates in an article on stuff are calling for more radical changes to be made after the review was released, and patient advocates question the plan to tackle entrenched inequity in a RNZ article saying that the devil is in the detail when it comes to exactly how Pharmac will address these issues of inequity.
Rare Disorders NZ who offer a central starting point for patients and families affected by rare disorders, and helps families, patients and healthcare providers find essential information and support groups have released a statement saying that they are overjoyed that the Health Minister has instructed Pharmac to develop a Rare Disorder Strategy.
On their facebook page they post they recognise that “this is a huge moment for the rare disorder community in NZ after years of tireless advocacy by so many in the community“.
Scoop an independent news website also ran an article about AstraZeneca New Zealand welcoming the release of the Pharmac Review Final Report and the Government’s commitment to the majority of the recommendations in it.
AstraZeneca New Zealand and Australia’s Country President Ben McDonald said that regardless of a patients stage of disease or prognosis, they should have equitable access to the best available treatments.
He went on to say that they “look forward to working collaboratively with the Government, Medsafe, Pharmac, the medical community and patient organisations to ensure the science validating the benefits of new medicines for patients is better understood, so New Zealanders do not have to wait longer than is necessary or miss out on treatments which will prolong their life and improve the quality of the time they have left.”
In the interim people such as myself will hold out hope that in due course medications that are available within the system already but only for certain conditions will become more widely available to those that need them.
Also that for those people that aren’t able to access them because their condition doesn’t fit certain criteria due to existing funding allocations will be able to do so.
As the cost of medications or a lack of funding should not be a barrier to people accessing better health and well-being in this day and age.
Check out my latest health update and more information about my condition Scleroderma, Raynaud’s and Interstitial Lung Disease here.
The life and times of Perry... 