There are 8 people who desperately need a medicine to save their lives from this disease called PNH-Paroxysmal Nocturnal Haemoglobinuria( a disease that causes immune system to destroy red blood cells). The only known drug for the disease is called Soliris that needs to be taken lifelong. The cost of this drug per person for a year is $500,000 and we have people 8 people in the country that desperately needs it.
New Zealand happens to be the only OECD (Organisation for Economic Co-Operation & Development) country that doesnt fund Soliris.
If the drug is not taken, it will result in anaemia, severe stomach pain, fatal blood clots, stoke and organ failure. Patient dies within 5 years of diagnosis.
The only solution is state funding for the drug which will save the lives of 8 people.
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