Better Breathing Magazine - Summer 2020

Summer 2020

Better Better Breathing Breathing

Conference wrap up!

Meet our Better Breathing Heroes!

NZ’s new vaping laws - what’s changed?

Be careful what you eat - the link between sulphites and asthma

e ries! W o wor here N ? e c t n en onfer om the eve t on c r ed ou ighlights f s is M Pg 6. e all the h provid

Pg 5. Is your wo rkplace toxic? Fin d out how workplace dust is affecting your health

Our Team Chief Executive Letitia Harding

In this issue...

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Office Administrator Catherine Fell

Community news We celebrate Māori Language Week, share a story from our friends at Kaikorai Valley College, and NZRSI put the call out for clinical research trials!

Donor Relations Coordinator Ruby Parker

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Research and Education Manager Joanna Turner

Grants and Fundraising Manager Harriet Cartwright PR and Comms - Head of Marketing Hannah Soult Marketing & Communications Advisor Victoria Fairweather Medical Director Dr Stuart Jones, MBChB, PhD, FRACP Chief Cultural Advisor –­­ Māori Sir John Clarke, KNZM, CNZM

Level 2, The Woolstore, 262 Thorndon Quay, Wellington 6011 PO Box 1459, Wellington 6140 04 499 4592 asthmafoundation.org.nz asthmaandrespiratoryfoundation asthmafndation asthmaandrespiratoryfoundation

ISSN 2703-4127

Meet our Better Breathing Heroes!

Breathe Better September has ended for another year and we share some of the amazing efforts our Heroes put in over the month.

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Understanding COPD COPD is a condition that affects over 200,000 Kiwis but remains woefully undiagnosed. Joanna demystifies the condition.

5

Is your worksite toxic?

Workplace dust is often invisible, but these tiny airborne particles can be a major trigger for asthmatics.

6-7

Building the foundation for better breathing - wrapping up NZRC Conference has wrapped up for another two years, we share some of our highlights from the event!

8 This magazine could not be produced without the generous funding of The Lion Foundation

P 9. Do you know what cystic fibro sis is?

We hear from on e brave Kiwi ba ttling the disease

NZ’s vaping laws - what’s changed?

We finally have vaping regulations, but what exactly has changed?

n ut o? o ce sed Mis nferen ut co ecko s Ch light h hig p.6

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Cystic fibrosis - the invisible illness Often dubbed as the ‘invisible illness’ cystic fibrosis affects many New Zealanders. One brave Kiwi shares her story.

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Sulphites and asthma Knowing your asthma triggers is key to good asthma management, but how does what we eat affect the condition?

11

Top tips for summer With La Niña weather patterns bringing a wetter and warmer summer, pollen counts are at an all time high. We go over a few tips to help keep your asthma and allergies under control this season.

On the cover...

2-year-old Macée Eva Blair and her winning art entry for the Breathe Better September art competition ‘Te Hā Ora’ under 5’s category.

Macée’s art represents “the breath of life” and is made from cuttings of flower shapes from magazines and paintings, which Macée then made into a lung collage.

We loved your entry Macée, congratulations!

Did you realise you can also read this magazine online?

Head to the link below to view every issue of Better Breathing Magazine! issuu.com/betterbreathing

ARFNZ CE, Letitia Harding

Letitia’s Message I

t has certainly been a busy, interesting and challenging year for the ARFNZ whānau.

As we wind-down for the festive season, it’s important to look back at what was achieved over the past year – despite the challenges.

This November, the Smokefree Environments and Regulated Products (Vaping) Amendment Bill and the Smokefree Environments and Regulated Products Act came into effect to finally regulate vaping. The Foundation has been advocating for the regulation of vaping products in Aotearoa since 2017, and in particular, addressing the ‘no holds barred’ marketing of vaping products to youth – it was good to finally see all of our hard work come to fruition!

Earlier this year we launched the Don’t Get Sucked In website to encourage teens not to pick up vaping (or smoking) in the first place, by challenging them to do the research and think critically about vaping. The website publishes and disseminates information and research about vaping products and their use, and sits within the wider body of work conducted by the Foundation to reduce

the appeal of vaping (and smoking) to children and young people, and to promote healthy lungs.

In November, the Foundation also formed the Vaping Educational Advisory Group (VEAG), consisting of 13 specialists in their field to regularly review the content of the Don’t Get Sucked In website and its resources. We look forward to feedback on the website from the community, and will regularly update and provide resources based on this.

Shortly, the highly anticipated inaugural Chronic Obstructive Pulmonary Disease (COPD) New Zealand Guidelines will be published which will follow on from the updated Child Asthma Guidelines, and Adolescent and Adult Asthma Guidelines published mid-2020. These guidelines are pivotal to why the Foundation exists – creating national initiatives that improve respiratory health outcomes for the 700,000 people living with a respiratory condition in New Zealand.

The work undertook to produce these guidelines was unsurmountable, not only by the Foundation’s team, led by Joanna Turner, our Research and Education Manager, but also the numerous voluntary hours of the working groups who wrote the guidelines. The Foundation is extremely fortunate to have a dedicated Scientific Advisory Board of the highest calibre involved in critical projects such as these.

On stage during the NZ Respiratory Conference opening ceremony

Finally, a highlight for the Foundation was hosting the biennial New Zealand

Respiratory Conference (NZRC). We had to make a decision very early on in the year as to whether we should invest in this face-toface conference during this unpredictable COVID-19 climate. The team had been registered as delegates or exhibitors at many national conferences this year which at the last minute had gone to ‘virtual only’, so we knew that there was always a risk that NZRC 2020 would need to do the same.

With the support from our board, it was because of this that we also invested in a simultaneous virtual conference should a COVID-19 lockdown level occur in Wellington.

We were so ecstatic to have the conference go forward, and not only that, but a record number of over 200 attendees joined us from across the healthcare sector! This year the programme included presentations on vaping, healthy homes, COVID-19, and air quality. The key highlight had to be the ‘Te Whare Tapa Whā’ plenary session, where Māori health and housing inequities, and community programmes were explored and ideas exchanged.

It’s been an interesting 2020 to say the least, but the Foundation never took our foot off the gas – we were adaptable and we delivered. We expect the start of 2021 to be no different.

Meri kirihimete

Letitia Harding

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Respiratory Community News Celebrating te wiki o te reo Māori!

During Māori Language Week (14-20 September), Heremana Te Kōpūtōtara (Sailor the Pufferfish) visited kura across Whanganui-a-Tara (Wellington) alongside his friend and presenter, Hinerongonui Kingi, educating over 400 tamariki on huangō (asthma) and ngā timatanga (asthma triggers). The shows were thanks to a partnership between the Foundation and Te Taura Whiri i te Reo Māori (Māori Language Commission).

Tauira (students) from Te Kura Kaupapa Māori o Te Ara Whanui demonstrating ngā timatanga o te mate huangō (asthma triggers)

Kaikorai Valley College bake sale

During this time, the team at the Foundation also took part in the ‘Māori Language Moment’. The ‘moment’ marked the day and the hour in 1972 that a group of Māori language champions presented a petition on the steps of parliament calling for te reo to be taught in our schools. To recognise this, the Foundation shared a few of our favourite things in a short social media video – all in te reo Māori!

Volunteers needed for clinical trials

Kaikorai Valley College student, Maddy Himburg, contacted the Foundation recently about a social justice and human rights project that she, and fellow students were working on for their social studies class.

The New Zealand Respiratory and Sleep Institute (NZRSI) are looking for volunteers to undertake studies with the following respiratory conditions: Alpha-1 antitrypsin deficiency, IPF, COPD, or severe asthma.

The students wanted to work with a well-established organisation to either volunteer, or raise funds or awareness. As a result, they decided to organise a bake sale (featuring blue cupcakes to represent the Foundation) which raised over $90 in funds!

Clinical research trials are necessary to help better understand, diagnose, treat, or cure certain diseases or conditions. Without clinical trials, many life-saving medicines would not be available today.

The Foundation welcomes fundraising initiatives throughout the year. If you, or your school or workplace would like to raise funds or awareness for asthma in New Zealand, get in touch with the team at comms@arfnz.org.nz. Thanks again Maddy, and everyone at Kaikorai Valley College - we really appreciate it!

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It is important to note that these studies have a very strict inclusion and exclusion criteria, so not everyone is guaranteed a place on the trial. There is no cost to participate, travel and accommodation costs (if needed) may also be reimbursed, and all patients will benefit from a thorough medical review - regardless of inclusion in the study, or not. If you are interested, email: research@nzrsi.health.nz for more information.

W

ow – what a September! The Foundation was blown away with our recent appeal month ‘Breathe Better September’ - the most successful to date. This year more than 60 Better Breathing Heroes set themselves a ‘Better Breathing Challenge’ and raised funds and awareness to support the 700,000 Kiwis who live with a respiratory condition. From this, our Heroes raised more than $23,000 for the Foundation, while increasing awareness about the seriousness and prevalence of asthma and other respiratory disease in New Zealand. To everyone that participated, donated, or cheered from the sidelines – thank you so much!

We would like to extend a special mention to one of our Heroes, Lisa MacKay, a qualified chef from Morrinsville, who raised over $7,000 throughout the month, with activities including, raffling off baked goods, exercise challenges, and a charity auction with items donated from local businesses.

Breathe Better September is a campaign close to Lisa’s heart, having lived with asthma since she was a child, and losing a close friend to the disease. What started out as a $500 donation from Lisa herself, became so much bigger than Lisa imagined, with her generous family, friends, and Waikato business community rallying together to support the initiative. Lisa hopes that by sharing her story, that others can be encouraged to get out and raise awareness as well.

The team here at the Foundation also joined our Heroes this

month and set an ambitious Better Breathing Challenge of rowing 700 kilometres for the 700,000 Kiwis living with respiratory disease in New Zealand. We realised very quickly that we would need some support, so we called on New Zealanders to ‘donate their kilometres’ to help us reach our goal. Thankfully we had many supporters send in their kilometres and we’re pleased to say that we exceeded the target!

New Zealand businesses also got involved in the initiative this year with Friends of the Foundation sponsorship partner eHaus getting their entire team on-board, raising $3,500 during the month – an outstanding effort! Additionally Harvey Norman NZ, a long-time supporter of Breathe Better September, once again auctioned a new bed with all proceeds going to the Foundation. The King Koil Chiro Advance Queen Bed fetched $3,000 on Trademe – thanks Harvey Norman!

We would also like to send a massive thanks to all of our generous sponsors who supported the campaign through donating goods and services: F45 North Wellington, Dyson, Essano, Ecostore, Beauty Bliss, Tea Pea, Redcurrrent, Henrietta Soaps, New World, Whittaker’s, Farrah’s, ZLand, My Food Bag, Fullair, Daily Good, Swarovski, and Bambini.

Lastly, the Foundation received a record 64 entries for the annual Te Hā Ora art competition. The Foundation was so impressed by all of the entries which now take pride of place on the wall of the office for everyone visiting the Foundation to see. A massive congratulations to Macée Eva Blair, Yet Long Leung, and Taneora Pihima-Brown who were the winners of each age category, winning a brand new scooter kindly donated by Micro Scooters!

Clockwise from top left: Letitia announcing the winners of the art comp; 9-13 years winning art entry by Taneora Pihima-Brown; under 5s winning art entry by Macée Eva Blair; 6-8 years winning art entry by Yet Long Leung; and Lisa Mackay presenting the Foundation with a cheque of her fundraising efforts towards Breathe Better September.

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Understanding

COPD C

OPD is a condition that affects over 200,000 Kiwis but remains woefully undiagnosed. COPD is the fourth most common cause of death in New Zealand, and the third most common cause of death in the Māori population. With World COPD Day recently held on November 18, and NZ’s first ever COPD Guidelines soon to be published - raising awareness for the condition is key. Foundation Research and Education Manager, Joanna Turner, helps demystifies the condition below, and provides some helpful advice on how to live life to the fullest with the condition.

How is it treated?

What is COPD?

Being diagnosed with COPD will inevitably change a person’s life, however, by taking some steps to manage day-to-day activities, some of the anxiety and discomfort that is often associated with a COPD diagnosis can be minimised.

COPD stands for chronic obstructive pulmonary disease. It’s an umbrella term used for long term respiratory diseases including emphysema, chronic bronchitis and chronic airflow obstruction.

Living with COPD means that the breathing passages (airways) in your lungs are compromised and the lung tissue is damaged, making it hard to breathe or catch your breath.

It’s estimated that 15% of adults over the age of 45 suffer from COPD in New Zealand, but many don’t know they have it, or know anything about it.

What are the symptoms?

COPD can be mild, moderate or severe depending on how badly damaged the lungs are. When a person starts to experience symptoms, such as shortness of breath, difficulty breathing (especially with exercise), a cough, presence of phlegm, bronchitis and wheezing – this means the damage has already occurred and unfortunately cannot be reversed.

Even simple activities like walking, bending down, showering and hanging out the washing can cause breathlessness. This can be very frightening for people, especially if breathlessness becomes out of control.

What causes it?

Smoking is the most common cause of COPD, and this includes being exposed to secondhand smoke for long period of time. Unfortunately, the damage occurs over a number of years, and symptoms don’t become noticeable until over the age of 40, when the damage has already occurred. Some people can also develop COPD from being exposed to noxious particles in the air, such as pollution, contaminants, dust, or chemicals.

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COPD treatment focuses largely on relieving symptoms through medication and effective management strategies. People can also make themselves feel better through regular physical activity, eating a balanced diet, conserving their energy if tired, managing breathlessness by developing breathing control techniques, developing a COPD action plan (self-management plan) alongside a health professional, minimising stress, and having support from family and friends.

For further information about COPD, see the Asthma and Respiratory Foundation’s website asthmafoundation.org.nz/your-health/copd

Breathlessness Strategies for COPD If you have COPD and are experiencing breathlessness, there are several different breathing techniques that can be used to manage this. Practice each technique to find out what suits you best.

1.

Breathing Control/Tummy Control: Place hands on tummy, breathe in (tummy goes out), breathe out (tummy goes in)

2.

Pursed-Lip Breathing: Breathe in through your nose, breathe out like through a straw

3.

Blow as you Go: Breathe in before exerting effort, breathe out while making the effort

4.

Paced Breathing: Breathe in for a few counts, breathe out for a few counts

5.

Breathe around the rectangle: Find a rectangular object such as a door frame and breathe in along the short side, and out along the long side.

Is your worksite toxic?

E

very year, thousands of people in New Zealand are hospitalised after being exposed to airborne contaminants at work. Often these contaminants can’t be seen with the naked eye, but after breathing them in over sustained periods of time, they can cause ongoing and long-term health problems, including lung disease.

Workers in the construction industry are 20 times more likely to die of exposure to harmful airborne contaminants than from a workplace accident – a big culprit is dust.

The risk is greatest when fine dust particles are inhaled during cutting, sanding, grinding, sweeping and polishing materials. This dust can also include dangerous materials such as lead oxide when working with old pipes, or the fine fibres when stripping out fibrous insulation. This risk is increased further when working on dry and exposed worksites, or when it is windy (as dust in the air increases).

While many work activities can create dust, the dust that can’t be seen is the dust that causes the most harm when inhaled. We discuss some of the risks below, and how you can stay protected in the workplace.

Wood dust Wood can be in many forms such as softwood and hardwood, and wood-based products such as MDF and chipboard. Exposure to all types of wood dust can lead to the development of asthma and can trigger asthma attacks in existing asthma sufferers. There are even specific types of wood – western red cedar and iroko – that can cause a rare form of nasal cancer (extrinsic allergic alveolitis). Exposure to any type of wood dust can cause irritation, allergic rhinitis (runny nose) and impaired lung function.

Silica dust/respirable crystalline silica (RCS) Large amounts of silica is present in most rocks, sand, and clay, and can also be found in granite and concrete.

Some silica dust is small enough that it is reaches deep inside the lungs when inhaled; this is called respirable crystalline silica (RCS).

Exposure to RCS over many years, or in extremely high doses, can lead to serious lung diseases, including fibrosis, silicosis, COPD and lung cancer.

These diseases may cause permanent disability and early death.

Accelerated silicosis (rapid progression of the disease) is particularly dangerous for those working in the stone benchtop industry as the silica content of engineered stone is extremely high at 90% – much higher than natural stone at 25-40%.

Asbestos Asbestos is classified as a category 1 carcinogen. When materials that contain asbestos are disturbed or damaged, fibres are released into the air which, when inhaled, can cause mesothelioma, asbestos-related lung cancer, asbestosis, and pleural thickening – all fatal or serious and incurable diseases which take many years to manifest. Asbestos is found in some roofing, in older insulation, textured paint on walls and ceilings, in some vinyl floor tiles and linoleum, and as backing on vinyl sheet flooring and adhesives. Anyone doing at-home DIY work, floorers, tilers, painters and decorators, and plasterers need to be aware of what materials may contain asbestos, and take the appropriate precautions when working with and destructing asbestos containing materials.

Managing these risks in the workplace In addition to silica and asbestos, there are many other types of general construction dust, fumes, and sprays that can cause respiratory illness. It’s important that workers protect themselves by wearing the appropriate personal protective equipment (PPE) including respiratory protection, and go to their doctor if they have any symptoms including frequent dry coughing, shortness of breath, and wheezing.

Under the Health and Safety at Work Act 2015, employers also have a responsibility, as far as is reasonably practicable, to keep their workers not only safe but healthy as well. This means thinking about how risks like dust can be eliminated, isolated or managed.

For more information about respiratory health in the workplace visit breathefreely. co.nz/construction or WorkSafe’s website, worksafe.govt.nz/topicand-industry/dust/ Respiratory protective equipment such as respirators are advised when working with airborne particles.

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M

Building th

ore than 200 attendees joined us from across New Zealand for the Foundation’s biennial New Zealand Respiratory Conference this past 5-6 November, making the event the Foundation’s largest conference to date.

The Foundation is proud to have delivered another two days of clinical best practice, with this year’s theme being, ‘Building the Foundation for Better Breathing’ – a reference to the recently launched NZ Adolescent and Adult Asthma Guidelines, the revised Child Asthma Guidelines, and New Zealand’s upcoming COPD Guidelines.

Health professionals from a variety of professions attended either the in-person event in Wellington, or online via the Whova app. These delegates included GP’s, nurses, pharmacists, specialists, educators, and researchers from both primary and secondary care.

Missed out on conference? Not to worry, we have collated a few of the highlights from this year’s programme below.

Day One Highlights Plenary One Conference kicked off with the first session ‘laying the Foundation for asthma management in New Zealand’ with Professor Richard Beasley covering the new Adolescent and Adult Asthma Guidelines, and Dr David McNamara taking us through the revised Child Asthma Guidelines. The release of these guidelines mid-2020 saw fundamental changes to asthma management in New Zealand based on advances in knowledge and outcomes from clinical trials.

Plenary Two This session saw Dr Stuart Jones introduce New Zealand’s first COPD Guidelines – this presentation was noted as one of the highlights of NZRC 2020.

Betty Poot covered the Foundation’s Asthma & COPD Fundamentals E-Learning Series, and Dr Amy Chan provided a thought-provoking presentation about how digital technology can aid in asthma management.

Plenary Three Here we heard some interesting insights into how COVID-19 has affected RSV rates in 2020, and an update on associated immunisations with Dr Adrian Trenholme.

Following this, Logan Heyes from PHARMAC updated us on respiratory medicines which showed a clear link to the updated NZ Asthma Guidelines.

Plenary Four Closing day one, this session spoke to Te Whare Tapa Whā, with Lady Tureiti Moxon giving us an understanding of the Wai 2575 Hauora Treaty Claim. Noelene Rapana inspired us with how cultural clinical interventions have improved health outcomes in the Bay of Plenty, and Keri Brown demonstrated how the COVID-19 pandemic revealed ‘cracks’ in Hutt housing.

the Foundation Day Two Highlights

for better breathing Plenary Seven

Plenary Five Day two kicked off with a demonstration of the links between housing, clean air and health – Raewynne Jacobs from EECA covered the Warmer Kiwi Homes Programme and the support that is available for homeowners for heating and insulation. Dr Guy Coulson from NIWA spoke to air quality and what New Zealand’s problem areas are that may affect respiratory health. People with respiratory diseases are especially vulnerable to air pollution, which exacerbates COPD and contributes to the onset of asthma - a global problem with air pollution being one of the largest environmental causes of ill health and mortality.

Plenary Six Aptly titled ‘Building towards a Smokefree 2025’ this session was particularly topical given the recent passing of the Smokefree Environments and Regulated Products (Vaping) Amendment Bill in August 2020. Fact-based presentations from Professor Hayden McRobbie on the role of ENDS (electronic nicotine delivery systems) to quit smoking, and Professor Philip Pattemore questioning if ENDS are displacing cigarettes in youth - generating a strong Q&A session.

This session focussed on how to improve patient care and promote self-management. Sue Ward and Kate Te Pou from Hawke’s Bay demonstrated how; with very little finance and lots of passion, the health and quality of life of respiratory patients could be improved.

Dr Sarah Mooney conveyed how our sedentary lifestyles have a health impact, and Susan Jones spoke to the barriers of good asthma care. Inequities and barriers to healthcare were key themes throughout NZRC 2020.

Plenary Eight This session saw delegates both laugh and cry with personal stories from Peter Atkins who lives with COPD, finding comfort and relief in singing for pulmonary rehabilitation, and Tomairangi Brown, who at only 17 years old, has had more than 150 hospital admissions for asthma and bronchiectasis.

The next NZRC will be held 2022. Photos and presentation slides are available at asthmafoundation.org.nz/our-work/nzrc

Plenary Nine This session looked to the future with a reflection on the lessons learnt from the COVID-19 pandemic and what it’s still teaching us – presented by Dr Michelle Balm, a clinical microbiologist and infectious diseases physician who has contributed to the regional and national COVID-19 response.

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NZ’s new vaping laws - what’s changed?

O

n 11 November 2020, the long-awaited vaping regulations finally came into effect, despite the process starting in parliament almost two years prior.

The amendment Act strikes a balance between ensuring vaping products are available for smokers who want to switch to a less harmful alternative, and ensuring these products are not marketed or sold to young people.

Described as the “wild west” vaping industry, regulations were required to combat the uptake of youth vaping in New Zealand – a major concern raised by the education sector in particular.

The prior law did not cover rules and regulations for vaping. For example, there were no restrictions on the advertising of vaping devices and liquid, no regulations on vape and e-liquid flavours, no framework around vaping in public spaces, and there were no product safety requirements!

•

It is now illegal to vape in a car with small children.

Some of the above legalisation has already come into effect as of 11 November, with the remaining legalislation to be phased in over 15 months.

Youth vaping – how much of a problem is it?

With no previous restrictions on marketing of vaping products, and a wide variety of attractive flavours available, recent studies show a significant rise in vaping in under 18-year-olds.

The latest ASH (Action for Smokefree 2025) Year 10 data on e-cigarette use among New Zealand adolescents shows that prevalence of regular (at least monthly) and daily use of e-cigarettes approximately trebled between 2015 and 2019, with the greatest use among Māori students.

Don’t Get Sucked In - youth vaping education

The Foundation has long been an advocate for vaping regulations in New Zealand, and submitted to the Select Committee on the Bill during the consultation phase. The Foundation is pleased to see that regulations are now finally in place, and hopes that this will work towards curbing the growing trend of youth vaping.

So what has changed in the new Act? • • • •

• •

Vaping is now prohibited in workplaces, schools, early childhood education centres and a number of other locations Advertising and sponsorship relating to vaping products is prohibited The sale of vaping products and toy vaping products to under18s is prohibited A new safety system has been introduced, which allows the Ministry of Health to recall products, suspend them and issue warnings The importation and sale of nicotine products for chewing or similar oral use is prohibited The sale of flavoured e-liquids is now limited to specialist stores, including online retailers, with shops such as dairies, supermarkets and petrol stations restricted to mint, menthol and tobacco flavours

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The Foundation recently re-launched the ‘Don’t Get Sucked In’ website to align with the new legalisation. The website encourages teens not to pick up vaping (or smoking) in the first place, by challenging them to do the research and think critically about vaping. The website is intended to publish and disseminate information and research about vaping products and their use.

It sits within the wider body of work conducted by Asthma and Respiratory Foundation NZ to reduce the appeal of vaping (and smoking) to children and young people and promote healthy lungs. The material that is on the website is all evidence based and reviewed by our Vaping Educational Advisory Group made up of a wide array of experts including registered health practitioners.

Have you seen our resources?

Vaping education posters and other resources are available as free downloads at dontgetsuckedin.co.nz

Cystic Fibrosis -

the ‘invisible’ illness C

ystic fibrosis (CF) is New Zealand’s most common life-threatening genetic disorder that affects breathing and digestion. It leads to the lungs and digestive system becoming blocked with mucus which can cause chronic lung infections and problems with weight gain and malnutrition.

There is currently no cure, however advancements in medications are giving hope to those with CF and their families.

Kelly Oliver deals with the ‘invisible illness’ every day, and now she wants to help kids who share a similar fate. The 35-year-old Hamilton woman has cystic fibrosis but admits she’s one of the lucky ones.

She’s been fortunate having a lot of financial support from her parents and has equipment that helps her deal with daily tasks.

Kelly has to use her nebuliser twice a day for 40 minutes in the morning and around half an hour at night. Hers is portable, allowing her to slip it into her pocket so she can carry on with things.

“I can hang the washing out, get my daughter up for school, get her out of bed. Whereas children being treated in the public system would most likely be using a wall nebuliser.”

In Kelly’s opinion, nebulisers are “old, loud, slow, [and] power sourced. If a kid was stuck with one on the wall you are probably looking at around two hours. And you have to have noise-cancelling headphones on because they are quite noisy.”

Kelly said there are a lot of families that can’t afford the portable nebulisers. She believes they cost around $1200 and have a life span of about five years. Extra gadgets such as filters swallow another $150 every two months.

“I know a lot of the families might not be able to afford them, they are expensive and the government won’t fund them as the other machine does the job.”

Kelly decided to help out her fellow sufferers by hosting ‘Breathing LIFE a fundraising night.’

“The Waikato CF branch covers a really big area, and some people will need to go to the hospital, they might have other kids and live in Taumarunui, so it’s petrol every day, accommodation costs, they

might need to feed their kids more. Some might not live in warm houses and need heating.

“After I started digging I realised we need lots and lots of money.”

Initially hoping to raise $15,000, Kelly ended up raising $27,000 from the event held on 17 September.

One in 25 people will carry the CF gene, which makes it the most common life-threatening genetic condition affecting New Zealand children. There are 568 people in NZ with CF, 42 of whom live in Waikato. The average age of someone with CF is 37.

“It’s called the invisible illness. Quite often people don’t know you are sick, even when I am sick I might be a bit pale, I still look normal, it’s all internal.”

Often CF sufferers are dealing with other complications of the disease - they are susceptible to asthma and diabetes because their pancreas doesn’t work properly. They often have sinus problems which require operations. Kelly admits now is a good time to have CF as there are a number of drugs coming through.

“But we need to get them into the country first, but they’re also hellishly expensive.”

Kelly’s drugs are funded but it costs between $2000 to $2500 a week to keep her alive.

She admits medication has come a long way, but New Zealand is so far behind “it’s not funny”.

“The DNA drugs are expensive, they’re $650 a packet, and I need around two a week. And the new gene drug that is coming in the States is $500,000 per person, per year.”

Kelly is currently campaigning with other New Zealander’s with CF to get access to life-saving medications such as Trikafta, Orkambi and Symdeko that are available in other OECD countries, but not currently funded in New Zealand. See cfnz.org.nz for more information, or facebook.com/trikaftaforkiwis This article was reproduced with permission from stuff.co.nz. Article credit: Jo Lines-MacKenzie. Photos: Christel Yardley.

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Sulphites and Asthma W

e’ve heard of smoke, pollen and exercise being asthma triggers, but what about sulphites?

• • •

This lesser known trigger has been shown to cause wheezing, chest tightness and coughing in a small number of people with asthma.

You can also test for sulphites using sulphite testing strips. These test for sulphite ions in water-based solutions. You can purchase these from allergy stores online.

What are sulphites?

Sulphites are naturally occurring in some foods but are widely used as a food additive to prevent microbial spoilage and preserve colour. Sulphites extend the shelflife by preventing or slowing down the growth of microorganisms, like mould or bacteria. Sulphites release sulphur dioxide gas (SO2), which is the active component that helps preserve drinks, foods and medication.

What foods may contain sulphites?

Sulphites can be found in soft drinks and cordials, dried fruit (especially dried apricots), wine, fermented foods, and processed products such as sausages and hamburger patties.

How do I know if a food contains sulphites?

Under the Food Standards Code, added sulphites must be declared on the label of a packaged food when present in foods in concentrations of 10 mg/kg or more with the following additive numbers: • 220 Sulphur dioxide • 221 Sodium sulphite • 222 Sodium bisulphite

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223 Sodium metabisulphite 224 Potassium metabisulphite 228 Potassium bisulphite

How are sulphites regulated?

The use of preservatives is regulated in New Zealand and can only be added to specified foods. They also can’t exceed the maximum permitted level (MPL) given in the Australia New Zealand Food Standards Code and the Food Act 1981.

The Ministry for Primary Industries has the statutory obligation to ensure food safety standards are being met.

How do I know if sulphites are a trigger for me?

It’s estimated between five to 10 percent of people with asthma may have adverse reactions to sulphites, resulting in wheezing, chest tightness and coughing. These symptoms are more likely when asthma is poorly controlled.

However, most people with sulphite sensitivity do not have positive allergy tests and there is currently no reliable blood or skin allergy test for sulphite intolerances. A food challenge under supervision of a clinical immunology/allergy specialist may confirm or exclude sensitivity.

Foods that contain sulphites Sulphites can be found in a variety of foods and beverages. We have listed a few of these common items below.

Dried fruit Dried fruit such as apricots, and pineapples are among the foods highest in sulphites, with raisins and prunes containing between 500 and 2,000 parts per million.

Pickled foods Pickles, relishes and foods made with vinegar, except distilled white vinegar, contain sulphites.

Dehydrated potato chips To preserve the life of the potato, many pre-cut and processed potato items such as crisps and chips contain sulphites.

Fermented drinks Sulphites naturally occur in the grapes and hops used to make wine and beer. They prevent the growth of the bacteria that make the drink go cloudy and literally turn the alcohol to vinegar.

Soy produce Soy protein products like soy sauce and tofu have naturally occurring sulphites as part of the fermenting process.

Jams and preserves Jam preserves, jellies, and marmalades all contain sulphites due to the pectin gelling agent they contain.

Top Tips for Summer W

ith international holiday plans on hold, many Kiwis will be hitting the road this summer, here’s some tips to keep your asthma and allergies in check while on holiday.

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Plan ahead When stopping off in towns and cities across the country, check the pollen calendar and local air quality health index before you start your day. If there is poor air quality, try and find indoor activities to reduce the potential irritation of your airways, which can lead to breathlessness and coughing. Estimated pollen levels can be checked on the NZ Metservice website at www.metservice.com.

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Be early

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Stay hydrated

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Chat with your doctor

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Locate your nearest medical facility

Be prepared As the temperature rises and pollen counts increase, you may find yourself experiencing asthma symptoms. It is important that you are prepared and have your inhaler, spacer, mask (if you always use one) and your asthma action plan with you when travelling. It’s also a good idea to keep all these items together in one small bag for quick access.

Be smart If you know it’s going to be a hot and sunny day, be smart about what activities you have planned and mindful of where your medication is. This means making sure you have your medication nearby and kept in a cool place, such as the glove compartment in the car (in the shade), or the bag you carry - to avoid it being in direct sunlight.

Stay cool If your asthma is triggered by hot and humid weather, you can help take control of your asthma by staying cool. While driving, use the air-con rather than putting the windows down. This will reduce the amount of pollen blowing into the car which can irritate your airways.

Use your Asthma Action Plan Before you travel, make sure your asthma action plan is up to date, and you are aware of your triggers. Having an asthma action plan enables you to identify when your asthma symptoms are flaring up and what to do when this happens.

We know that the hottest time of day in summer is in the afternoon.

To avoid the sweltering heat, plan your outdoor activities in the morning when the air quality is best, and the temperature is lower.

While this tip may seem obvious, it is so important to drink lots of water and stay hydrated. Whether you are making a pit stop in a rural town or driving long distances, we suggest that you always keep plenty of water with you.

If you know your asthma flares up in the summer season, or is triggered by hot and humid weather, it would be a good idea to speak with your doctor about your asthma treatment and make sure it’s right for you. Heat and humidity can worsen allergies with many triggers like pollen, dust and mould being more prevalent in this season also.

When travelling, make sure you know where the nearest medical centre is. If you have pre-planned the route you are driving, we suggest you note down all the medical centres you will pass just in case you need to get non-emergency help quickly.

Be aware of La Niña weather patterns this summer

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he combined effects of the warmth, humidity, and wet weather thanks to La Niña creates optimal growing conditions for pollenproducing weeds, grasses, shrubs, and trees - a major trigger for many with asthma and allergies.

Exercise caution as the warmer weather continues, and ensure you have enough non-expired medication on you for your travels - well before the Christmas break when most medical practices are closed.

The key thing to remember is a summer break doesn’t mean an asthma medication break - so don’t get caught out! It’s important to take your medication as prescribed, even if you don’t have symptoms.

11 Better Breathing

Symbicort.

A fast-acting reliever when you need it, that can help prevent asthma attacks. ®

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To find out more visit oneinhaler.co.nz

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Fast relief of asthma symptoms starting in 1–3 minutes Reduce the risk of asthma attacks, whilst taking Symbicort as prescribed by your doctor 1

®

If you require further information about your medication ask your doctor or pharmacist. SYMBICORT Turbuhaler Consumer Medicine Information is also available at www.medsafe.govt.nz ®

®

Keep using your asthma medication as prescribed by your doctor until they tell you to change. Your doctor may prescribe Symbicort Turbuhaler in a different way or for a different indication to that which is described here. Follow your doctors directions carefully. Usually you do not feel any side effects when you use Symbicort. The most common side effects of Symbicort are mild irritation in the throat, coughing, hoarseness, thrush (of mouth or throat), headache, tremor and palpitations, pneumonia in patients with COPD. Tell your doctor if any of these or other unusual effects bother you.

Symbicort is a prescription medicine for the treatment of asthma and COPD. For asthma: Anti-inflammatory reliever therapy (Symbicort 200/6); Anti-inflammatory reliever plus maintenance therapy (Symbicort 100/6; 200/6), maintenance therapy (Symbicort 100/6, 200/6, 400/12). For COPD (Symbicort 200/6, 400/12). Symbicort has risks and benefits. Ask your doctor if Symbicort is right for you. Use strictly as directed. If symptoms persist see your doctor. Symbicort is fully funded on the Pharmaceutical Schedule. Normal doctor’s charges and pharmacy fees apply. Ingredients: budesonide/formoterol 100mcg/6mcg, 200/mcg/6mcg, 400mcg/12mcg. For product details check the Consumer Medicine Information, CMI, at www.medsafe.govt.nz.

Reference: 1. SYMBICORT Turbuhaler Consumer Medicine Information. Available from https://www.medsafe.govt.nz/Consumers/cmi/s/ SymbicortThaler.pdf. Last accessed 17 November 2020.

Symbicort, Turbuhaler are trademarks of the AstraZeneca Group of companies. AstraZeneca Limited, PO Box 87453, Meadowbank, Auckland 1742. For Medical Information enquiries or to report an adverse event or product quality complaint: Telephone (09) 306 5650 or via https://contactazmedical.astrazeneca.com Or email Medical Information enquiries to medinfo.nz@astrazeneca.com. 000611. NZ-1217. TAPS NA 12521. November 2020. ®

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Got asthma?

Just one puff, once a day, to help you breathe easier for a full 24 hours 1

Ask your doctor if Breo Ellipta is right for you.

breoellipta.co.nz

100/25mcg

FULLY 100/25mcg FUNDED FULLY FUNDED

Reference 1: Breo Ellipta Data Sheet, GSK New Zealand, available at www.medsafe.govt.nz. Accessed 30/03/20 Breo® Ellipta® (fluticasone furoate/vilanterol trifenatate inhaler 100/25mcg per inhalation) is a Prescription Medicine. Breo Ellipta is used for the regular treatment of asthma (12 years of age and older) and Chronic Obstructive Pulmonary Disease (COPD). Breo Ellipta 100/25mcg is a fully funded medicine; Breo Ellipta 200/25mcg is a private purchase medicine (dose indicated in asthma only). Use strictly as directed. Breo Ellipta is not for relief of acute symptoms. Always carry your reliever inhaler. Do not discontinue Breo Ellipta abruptly. This medicine has risks and benefits.

Tell your doctor: If you are taking any other medicines or herbal remedies, you have liver disease, heart problems, high blood pressure, pulmonary tuberculosis (TB), infection of the lungs (pneumonia) or weak bones (osteoporosis). Side effects may include: Headache, common cold, oral thrush, pneumonia, infection of the nose, sinuses or throat, flu (influenza), pain and irritation at the back of the mouth and throat, inflammation of the sinuses, weakening of the bones, leading to fractures. If symptoms continue or you have side effects, see your doctor, pharmacist or healthcare professional. For more information including additional side effects, see Breo Ellipta Consumer Medicine Information at www.medsafe.govt.nz. Normal doctor’s office visit fees apply. Ask your doctor if Breo Ellipta is right for you. TAPS NA 11935 PM-NZ-FFV-PSTR-20MAY0001

Find your local Society!

Did you know that ARFNZ is affiliated with many asthma societies across New Zealand who are here to provide you with support, rehabilitation and nursing assistance with your respiratory condition?

Horowhenua Breathe Easy Group iandlmckenzie@xtra.co.nz LEVIN 0279521439 06 3688069

MahiTahi Hauora 28-30 Rust Avenue WHANGAREI 09 438 1015 MahiTahi Hauora 182 Commerce Street KAITAIA 09 408 3142

Asthma & Respiratory Management BOP reception@asthmabop.org.nz www.asthmabop.org.nz 254 Chadwick Road TAURANGA 0800 276 267

Eastern Bay of Plenty & COPD Support Group COPD@drct.co.nz Disabilities Resource Centre 141 King Street WHAKATANE 0800 227 363

Asthma Waikato info@asthmawaikato.org.nz www.asthmawaikato.org.nz 18 Claudelands Road HAMILTON 07-838 0851 Manawatū Breathe Easy sjorgi64@gmail.com Palmerston North 0272420669

Gisborne & East Coast Asthma Society lynlolohea@hotmail.com 14 Kennedy Street GISBORNE 06-868-9970

Nelson Asthma Society asthma.nelson@xtra.co.nz 9 Cambridge Street RICHMOND 03 544 1562

Breathe Hawke’s Bay admin@breathehb.co.nz www.breathehb.co.nz 199 Dickens Street NAPIER 06-835-0018

Asthma Marlborough Inc asthma.marlborough@xtra.co.nz Marlborough Community Health Hub 22 Queen Street BLENHEIM 03-579-1609 Southland Asthma Society southlandasthma@xtra.co.nz Federated Farmers 70 Forth Street INVERCARGILL 03 214 2356

Tu Kotahi Māori Asthma Trust anne@kokiri-hauora.org.nz 7-9 Barnes Street Seaview LOWER HUTT 0800 939 462

CanBreathe office@canbreathe.org.nz www.canbreathe.org.nz 196 Hills Road, Edgeware CHRISTCHURCH 03-386-0278

Asthma Otago otagoasthma@xtra.co.nz Dunedin Community House Cnr Moray Place & Gt King Street DUNEDIN 03-471-6167

North Otago Asthma sec.noasthma@gmail.com 0277535711

About ARFNZ Asthma and Respiratory Foundation NZ is the national authority for respiratory illness within New Zealand. ARFNZ develops and supports respiratory health best practice through partnering, research, training and education, and continually works towards increasing awareness of respiratory illness within New Zealand.