Panui - March New Developments in CF Update from the Board Clinical Advisory Panel AnnouncedNew Breath4CF Deadline Orkambi Now Unfunded Prescription Medicine View this email in your browser

New Developments in CF SeminarStarship Associate Professor Dr Cass Byrnes has given an informative and insightfulpresentation for CFNZs Auckland Branch on New Developments in CF There was an impressive turn out from the CF community for her talk this monthwhich covered the latest research including the emerging new drug tezacaftorand promising new study of triple therapy which includes a new drug compoundcalled VX-440 Dr Byrnes also revealed comparisons between new precision medicines likeKalydeco and Orkambi that are not yet funded in New Zealand to current treatmentsavailable in NZ Lung Function (FEV1) Ivacaftor (Kalydeco) up 104 percent Orkambi up 35 percent Tezacaftor ivacaftor up 4 percent Inhaled TOBI up 12 percent Pulmozyme up 58 percent Hypertonic saline up 32 percent Pulmonary Exacerbations Ivacaftor down 60 percent Orkambi down 30 - 39 percent Tezacaftor ivacaftor down 35 percent

Pulmozyme down 22 percent Hypertonic saline down 66 percent Her presentation was followed by a panel discussion with Dr Byrnes and StarshipsDr Mirjana Jaksic CF Nurse Specialist Jan Tate and Physiotherapist RebeccaScoones with a lot of questions raised regarding the lack of funding for newprecision medicines in New Zealand Dr Byrnes said the high cost of medicine like Kalydeco is the only reason it remainsunfunded because she says it ticks all the other boxes for Pharmac The Branch has acknowledged the Wilks Charitable Trust for providing a grant for theseminar and to Choice Hotels for assisting with the venue The presentation was livestreamed on the Auckland Cystic Fibrosis Facebook Page and will also be availableon video next month

Update from the BoardMarch saw a very full and exciting weekend for the Board We started on Saturdaymorning with a facilitated discussion to begin developing a new strategic plan Thisplan once completed will drive the work done by the organisation for the next threeyears Certainly advocacy access to high-quality care medication and treatment andstrong links to our branches and a strong CF community were some of the prioritiesidentified by the Board The plan from here is to gather your ideas and give them full consideration in theprocess This process began at the Chairpersonsrsquo Conference late last year We willalso get feedback from in-depth empathetic interviews of some families and adultswith CF and from the upcoming CF survey of families and adults In late May a draft strategic plan will be sent out for further consultation Once itsbeen finalised a special one-day meeting of CFNZ Chairs will be held to discuss thestrategic plan and how we can implement it Day two was the March Board Meeting We would like to thank Waverley Waring whojoined us from the Auckland Branch to put forward her passionate thoughts on whereCFNZ should be heading and some insightful ideas on how to get there The Board is aware of the need to invest in the resources necessary to grow ourincome and ensure the sustainability of CFNZ Currently CFNZ is tracking welltowards a small end-of-year surplus and the Board has approved the employment ofan additional fundraiser and to contract specialist advice for our Advocacy PlanThanks to Auckland Branch which has generously offered to fund this advocacyexpertise CFNZ is also currently looking to recruit a full-time AdministrationManager Emma Nielsen has cut back her hours to 15 hours a week ndash MondayWednesday and Friday And sadly 15 May will be her final day with CFNZ An area of work that has now been completed is the empathetic interviews withfamilies of newly diagnosed and small children The information obtained from theseinterviews has been immensely valuable and is contributing to the educationalinformation in the upcoming new guides As a result we have decided to commencean equivalent piece of work with Adults with CF This work is to be jointly funded byAuckland Wellington and Hawkersquos Bay branches Wonderful Finally we have reviewed and approved CFNZrsquos Health and Safety policy documentwith the proviso that there are some areas that need further thought in particular

around the issue of travel for Fieldworkers and also a comprehensive and definitivecross infection policy You will see from this report that we really want to engage and involve our wholecommunity not just in the strategic process but specific projects We know there is awealth of people skills and energy in our CF community Please donrsquot hesitate as abranch or individual to get in touch if you think you can help - Michele Wilson CFNZ Board Member

Great Shot RyleeGood to see people taking advantage of PARIs offerto mark its 50th anniversary by donating 10 Euro(NZ$17) to CFNZ for anyone who completesa personal challenge wearing a PARI shirt and postsa photo on the PARI BOY 50th Facebook PageCongratulations to Rylee (12) of Hawkes Bay forbeing the first New Zealander to appear on PARIsFacebook Page wearing a PARI t-shirt with this greataction shot of her playing shot put Order your t-shirts through the PARI website - limittwo per order

New Clinical AdvisoryPanel AnnouncedCFNZ is pleased to announce thenew Clinical Advisory Panel set upto provide expert advice to CFNZThe Panel includes AssociateProfessor Cass Byrnes (Chair)Adult Physician Dr Mark OCarrollCF Nurse Specialists Jan Tate andCath Lamont PhysiotherapistsRebecca Scoones and TrishGoulter Dietitian Tory CrowderCFNZ Chair Jane Drumm and CFNZChief Executive Jane Bollard Itshoped the new Panel willmeet soon We will keep youinformed with any updates

Tommos Trek for MadddyMark Thomson is walking theCamino to join his father-in-law TerryWilson as he walks the Camino for asecond time followed by a film crewthatrsquos profiling Kiwis who haveembarked on the spiritual journey towalk 800 kilometres across Spain tothe cathedral of Santiago deCompostela Mark is also walking inmemory of his step-daughter MaddyStuart who passed away with CF in2016 He has kindly set up a

around the issue of travel for Fieldworkers and also a comprehensive and definitivecross infection policy You will see from this report that we really want to engage and involve our wholecommunity not just in the strategic process but specific projects We know there is awealth of people skills and energy in our CF community Please donrsquot hesitate as abranch or individual to get in touch if you think you can help - Michele Wilson CFNZ Board Member

Great Shot RyleeGood to see people taking advantage of PARIs offerto mark its 50th anniversary by donating 10 Euro(NZ$17) to CFNZ for anyone who completesa personal challenge wearing a PARI shirt and postsa photo on the PARI BOY 50th Facebook PageCongratulations to Rylee (12) of Hawkes Bay forbeing the first New Zealander to appear on PARIsFacebook Page wearing a PARI t-shirt with this greataction shot of her playing shot put Order your t-shirts through the PARI website - limittwo per order

New Clinical AdvisoryPanel AnnouncedCFNZ is pleased to announce thenew Clinical Advisory Panel set upto provide expert advice to CFNZThe Panel includes AssociateProfessor Cass Byrnes (Chair)Adult Physician Dr Mark OCarrollCF Nurse Specialists Jan Tate andCath Lamont PhysiotherapistsRebecca Scoones and TrishGoulter Dietitian Tory CrowderCFNZ Chair Jane Drumm and CFNZChief Executive Jane Bollard Itshoped the new Panel willmeet soon We will keep youinformed with any updates

Tommos Trek for MadddyMark Thomson is walking theCamino to join his father-in-law TerryWilson as he walks the Camino for asecond time followed by a film crewthatrsquos profiling Kiwis who haveembarked on the spiritual journey towalk 800 kilometres across Spain tothe cathedral of Santiago deCompostela Mark is also walking inmemory of his step-daughter MaddyStuart who passed away with CF in2016 He has kindly set up a

CFNZ Bowled OverHuge thanks to the BirkenheadBowling Club and RotaryBirkenhead which raised an incredible $8000 for CFNZ followingtheir bowling day for CF and to helpsupport one of their members -Curtis Ennor of the CF communityJane is pictured here with Curtis(left) and representatives from theBowling Club and Rotary at thecheque presentation this month This was the highest total raised forany charity by the Club which iskeen to support us again

Last Chance for CFAchievers AwardsEntries for the CF AchieversAwards close on 1 April TheAwards cover four categories -Sport Education the Arts andLeadership and are used tocelebrate the impressiveachievements of people with CFLate applications can be emailed toAwards Committee Chair DenisCurrie in PDF formatdeniscurryxtraconz and must bereceived by this Sunday Applicationform available on the website

Entertainment Books Back Entertainment Books are available for

Auckland Waikato and Bay of Plenty

Wellington Canterbury and Nelson and

Otago regions this year There are loads

Givealittle fundraising page withfunds going to CFNZ and Cure Kids

CF at School Guide The CF at School Guide for Parentsis the next new publication almostready to roll We are still looking foradvice from parents about how theymanage CF at school for theirchildren Wed love to hear any tipsand insights that could be helpful forother parents with school agechildren Contact Laura atofficecfnzorgnz Meanwhile theres been a delay onthe release of the NewDiagnosis Guide because we areseeking feedback from thePaediatric Societys Clinical Networkfor Cystic Fibrosis We do welcomeparents to review it once its ready

Orkambi Now UnfundedPrescription Medicine in NZ The medication lumacaftor has now been

listed as a prescription medicine in New

Zealand with the drug lisencing authority

Medsafe This means that people who

would like to pay for the drug Orkabmi (a

combination of the drug compounds

lumacaftor and ivacaftor) themselves can

import it from an overseas supplier

provided they have a doctorrsquos prescription

Meanwhile at this stage Vertex says it has

no plans to submit Orkambi for

government funding

New Deadline forBreath4CFApplications for Breath4CF grantsnow need to be in by 15 June eachyear to allow processing before 30June which is the end of the

of discounts in the Books along with the

chance to support CF Entertainment

Books cost between $65-$70 Most are

available early April apart from Canterbury

which is available early May You can pre-

order the Books

Auckland

Waikato amp BOP

Wellington amp Manawatu

Canterbury amp Nelson

Otago

Flu shot reminderThis years flu vaccine has beenupdated to include a new strain tocombat the Aussie flu which hashit hard in the UK and Europe Pharmac is funding a newquadrivalent seasonal flu vaccineto be available by April thatsdesigned to protect against fourstrains of influenza including twoA and two B strains includingthe life-threatening H3N2strain which overloaded thehospital system in the UK and USAwhere hospitalisation rates wereworse than during the swine fluepidemic Flu shots are free for NewZealanders with CF

Te Whero Family on Maori TVBig thanks to the Te Whero whānau who

ran in Aucklandrsquos Round the Bays to

support CF and were featured on Maori

Television this month

financial year The Breath4CFactivity grant is available for allpeople with CF ($300 for adults and$150 for under 6s each financialyear) The aim of the grant is toremove cost barriers for physicalexercise which improves lung healthfor people with CF Application formavailable here Note this form willbe available to fill out electronicallyon the new website which isexpected to go live next month

Good Links

Australia to increase access togenetic testing7 tips to prevent refluxaspirationMental health matters for lungtransplant - personal story USAustralias new Bachelor starhas a brother amp sister with CFThe difference betweenSymdeko and KalydecoIreland Dancing with the Starsjudge is interviewed abouthaving CF

Panui - sign up here

Quote of the Month CFNZ is doing such great things for all the kids and Im one of the

lucky ones I havent had nearly as many hospital admissions as some people with CF

but they still keep fighting

- Curtis Ennor - speaking at the Bowling Presentation in Birkenhead Ak

Copyright copy 2018 Cystic Fibrosis New Zealand All rights reserved

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