Nov 23, 2021, 2:27 PM
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ASK: Establish an innovative acceleration fund for PHARMAC to reduce pressure on the NZ health system.

We, the collective voice of the rare disorder community, are writing to raise the urgent need for additional funding for medicines for our community. Providing accelerated funding for medicines is critical to keep those with underlying medical conditions and compromised immune systems safe and out of hospital during the anticipation of COVID-19 Delta variant in our communities

It is assumed that hospitalisations will increase during potential widespread community transmission and that will place significant additional pressure on our already stretched health system and ICU units. As kaitiaki for our nations health and to ensure tangata whenua safety it makes sense for our nations leaders to reduce the current need for these vital services.

Many in the rare disorder community have health conditions that put them at a higher risk of hospitalisation, and more frequently than others. Our 2019 survey of the rare disorder community, found that one in three people were in hospital for an average of 16 days per year, and one in twenty people were in ICU for an average of 8 days per year. Many currently do not have access to treatment that could see them avoid hospitalisation due to available treatments not being publicly funded.

As part of our COVID-19 response plan we have already allocated a $25 million innovation acceleration fund for products so why not for treatments that can save lives? Countries such as the United Kingdom have protected those at high risk of hospitalisation by allocating emergency funding for medicines for those with underlying medical conditions.

Those in the rare disorder community in Aotearoa New Zealand are feeling particularly vulnerable with COVID-19 spreading in the community. The Government can help to protect them by increasing funding to Pharmac to fund the medicines on their Options for Investment list immediately. Doing so will protect the lives of those at high risk and reduce demand on the health system.

We look forward to your positive response to providing additional funding to help those in the rare disorders community.  We cannot imagine a New Zealander who would not support an investment like this.

Mal De embarquement Syndrome support Group New Zealand

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