Those with rare diseases 'not treated fairly'

Thats the opinion of the Muscular Dystrophy Association of New Zealand and its Chief Executive, Chris Higgins, in relation to the current decision criteria used by PHARMAC when considering funding for treatments. Including those potentially lifesaving treatments for rare conditions such as Muscular Dystrophy and other neuromuscular conditions.

While most peoples pharmaceutical needs are met well by PHARMAC, there is a significant group of children and adults with rare disorders whose needs are not met by current decision criteria. PHARMAC dont fully take into consideration the impact of the patients health on their individual families, society and the economy, or the impact a treatment or medication may have on these. Currently it is based on the benefit to the individual only and then one of cost. This narrow view is one that will always disadvantage those with rare disorders.

This becomes an even more pressing issue, as there are a number of treatments being developed that will be shown to be safe and effective in mitigating symptoms of these severe and debilitating conditions. "It would be devastating if people were denied access to these treatments just because theyre expensive" says MDA CEO, Chris Higgins. "That simply isnt a fair outcome", he continues.

The MDA has made a submission to PHARMAC on behalf of its membership and the wider neuromuscular community, that the decision criteria used when considering funding of new treatments be changed to better reflect the needs of those with rare conditions, their families, friends and the wider community. Also to better reflect the true benefit a potential treatment could have including, for example an individual previously unable to work being able to join the workforce again and not relying on social welfare or not requiring as much in home care as prior to undergoing treatment. "By looking at the whole situation before and after, we can then gain a true understanding of the value of a new treatment" - Chris Higgins

Until this is changed we will continue to have New Zealanders unable to get the treatment they are entitled to simply because its deemed to costly to treat their conditions.

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Those with rare diseases 'not treated fairly'