Battle to fund treat­ments

Auckland City Harbour News - - FRONT PAGE - By JESS LEE

PA­TIENTS with a rare form of can­cer are still fight­ing to gain fund­ing for a ‘‘gamechanger’’ treat­ment.

About 250 new cases of neu­roen­docrine tu­mours (NETs), the slow-grow­ing can­cer that killed Ap­ple founder Steve Jobs, are di­ag­nosed in New Zealand each year.

The tar­geted pep­tide re­cep­tor ra­dionu­clide ther­apy (PRRT) is not funded here de­spite it be­ing a recog­nised treat­ment in other parts of the world.

Dr Mal­colm Legget was di­ag­nosed three years ago with a pan­cre­atic NET that had spread to his liver.

Learn­ing that he had an un­com­mon can­cer with no di­rect ac­cess to the lat­est tests and treat­ment was ter­ri­fy­ing, he says.

‘‘It’s like living in a black hole with ques­tions eat­ing away at you.

‘‘Wait­ing and not know­ing is worse than be­ing told you have ter­mi­nal can­cer.’’

The Par­nell car­di­ol­o­gist had to find up­wards of $50,000 to travel to the Peter MacCal­lum Can­cer Cen­tre in Australia for a spe­cialised scan and treat­ment.

The cost puts it out reach for many pa­tients.

Legget is now sup­port­ing oth­ers suf­fer­ing with the can­cer as chair­man of Uni­corn Foun­da­tion New Zealand.

The newly reg­is­tered char­ity is back­ing an Auck­land on­col­o­gist’s ap­pli­ca­tion to fund the equip­ment needed to of­fer the ther­apy in hos­pi­tals here.

‘‘This treat­ment was an ab­so­lute game-changer for me,’’ he says.

‘‘It seems to us al­most un­eth­i­cal that peo­ple in New Zealand can’t ac­cess this scan and we want to change that by hope­fully rais­ing enough money to get the equip­ment over here.’’

Uni­corn Foun­da­tion New Zealand founder Siob­han Con­roy says the spe­cialised NET scan is des­per­ately needed in or­der for doc­tors to

of ac­cu­rately di­ag­nose and treat pa­tients. The char­ity hopes to raise $300,000 to es­tab­lish the scan and cover the cost for 100 pa­tients over the next two years.

‘‘Be­yond this our hope is that the Gov­ern­ment will see the value and step in,’’ she says.

Con­roy had a num­ber of surg­eries to re­move NETs, in­clud­ing one to re­move 12 cen­time­tres of her pan­creas four years ago.

The Glen Innes mum has a hered­i­tary gene, Mul­ti­ple En­docrine Neo­pla­sia Type 1, pre­dis­pos­ing her to the can­cer.

The gene has a 50 per cent chance of be­ing passed on.

Con­roy is now can­cer-free but is tested ev­ery six months to check for new tu­mour growth.

She says be­ing aware she is pre­dis­posed to this can­cer is a ‘‘gift’’ as it gives her the best chance of catch­ing the tu­mours early. Oth­ers aren’t so lucky.

‘‘A com­ment I of­ten hear from pa­tients is they wish they had been di­ag­nosed with a more com­mon can­cer be­cause there is aware­ness, there’s ac­cess to treat­ments and there’s fund­ing there – not for ev­ery can­cer but more com­mon can­cers def­i­nitely.

‘‘Pa­tients feel that there is an injustice there and that’s a big part of what we’re try­ing to do is make it equal.’’

Dr Mal­colm Legget and Siob­han Con­roy hope to raise aware­ness about neu­roen­docrine tu­mours (NETs), a rare form of can­cer.

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