Issue No. 35 January 2021

INCORPORATING

Volume 10, Issue 4 Polio Oz News December 2020 — Summer Edition

Inside this issue: From the Editor Page 3 In Memory of Rebecca Round Page 4 Two Articles from The World-wide Fellowship of Polio Warriors Page 5 What's Polio Got To Do With General Practice In Australia ? Page 6 Is There Need For A Siesta? Page 7 Polio Australia’s Submission to the Disability Royal Commission Page 8 Rogues’ Gallery Page 9 Polio Australia’s Media Release re. NDIS exclusion of polio survivors Page 10 Tasmanian Report to Polio Australia AGM Page 11 Don’t Forget Page 12

Polio Oz News (See Page 14 for Inside this issue) Pages 13 to 39

January 2021 Arthur’s TAS POLIO NEWS Page 1

SUPPORT GROUP INFORMATION

The Post Polio Support Groups are continuing to operate as usual. The EASTERN SHORE Post Polio Support Group of predominately residents of Ho- bart’s Eastern Shore is currently not meeting due to the Covid 19 virus. Contact David Shirley on 62287462 for further information. ~~~~~~~~~~~~~~~~~~~~~~~~~~ Please Note The GLENORCHY Post Polio Support Group no longer meets on a reg- ular basis but its members still keep in contact with each other. Peggy Garland is still the contact on 62491014. ~~~~~~~~~~~~~~~~~~~~~~~~~~ PLEASE NOTE The WEST TAMAR Post Polio Support Group meets at the Riverside Hotel, 407 West Tamar Highway, Riverside at 12 noon on the 3rd Monday each month over a light luncheon. Anyone is welcome to join us Contact Ron & Jan Storay on 63265523 for further information. ~~~~~~~~~~~~~~~~~~~~~~~~~~ These groups do provide an excellent opportunity to meet with other polio survivors and share ideas and hints on making life easier for us. The old saying “A problem shared is a problem halved” is very relevant for polio survivors. This has been clearly demonstrated at the Polio Health and Wellness Retreats organised by Polio Australia which have been held in each year for the last nine years, where up to seventy (70) polio survivors and their spouses/carers gather to share their experienc- es with others in a similar position. Why not join a support group near you? If there is not one, why not start one? It only takes a phone call to someone you know who has also had polio and it can grow from there.

Kindly printed by the office of Senator Wen- dy Askew (Liberal, Tasmania) whose sup- This newsletter is compiled as a service to Tas- mania’s Polio Community by Arthur L. Dobson port is greatly appreci- following the demise of the Post Polio Network— ated. Tasmanian Inc. It is available on subscription from Arthur and you will find the appropriate form of the back page of this newsletter. Please note that free copies will no longer be pro- vided to Doctors, Health Centres etc. but will still be provided to other organisations in ex- change for their newsletters.

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graves of children who would have died without From the Editor having seen a doctor and therefore the cause of Welcome to 2021, I hope it death would not have been recorded. brings us more joy than we In the two decades prior to the introduction of experienced last year. the Salk Vaccine polio was the third highest Just after I posted the Octo- cause of recorded death from major infectious ber issue of this newsletter I disease after Diphtheria and Whooping cough. Following the introduction of this and the Oral was informed of the passing of Rebecca Round and a trib- Sabin vaccine the death from polio dropped to ute to this inspirational lady almost zero. follows on the next page. In addition to this polio was regarded as a dirty With the closing of the Polio Library I decided to disease by the general population and many have a another look at some of the informative families deliberately hid the fact that family items it contains starting with ‘The Great members may have been infected in the very Scourge’, a book published in 1995 and written real fear of being ostracised by the general com- by Anne Killalea covering the polio epidemic of munity. This makes it impossible to provide any- 1937-38. where near an accurate number of people who were affected which is demanded by the govern- This work is based on Anne’s research and inter- ment authorities so as to justify providing appro- views with many polio survivors and medical and priate assistance to todays polio survivors. health professionals who lived through that epi- demic which with 421 cases per 100,000 head of One thing that stands out through out this book population reported was the second worst polio is the dedication of the health professionals and epidemic the world has experienced and had a volunteers to the task of trying to look after the death rate of 8.1%. The worst being in Iceland in victims often with very limited equipment and 1924 with 480 cases per 100,000 head of popula- supplies. These people worked what today tion. In Victoria in 1936-37 135 cases per would be regarded as totally unacceptable hours and many were on duty 24 hours per day 100,000 head of population were recorded mak- ing it the second worst epidemic in Australia. snatching small periods of rest/sleep on the hos- pital wards. They were not highly trained nor The first recorded case in this epidemic was a paid more than a pittance by todays standards. seven year old boy from the Launceston suburb of Inveresk and it is believed the virus arrived by Thanks to the dedication of these people and the ship from Melbourne. Despite road blocks being determination of the polio victims themselves put in place at places like Glen Dhu, to try and many of them went on to have very productive prevent the disease spreading to the North West lives and successful careers however it is becom- the virus spread rapidly around the state. ing increasingly obvious that those of us engaged in more physical occupations are suffering more Over the years I have met a number of the peo- from the late effects of polio/post polio syndrome ple mentioned in this book and have great admi- due to the irreparable damage done to our neu- ration of them and what they had to go through. ro-muscular system. As noted Physiotherapist, Margaret Mack, told me they were flying blind as at that time there was PLEASE—Have a another look though the Li- no standard treatment laid down to deal with po- brary list I included in the October Issue of this lio, either the epidemic or the patients them- newsletter and if there are any items there that selves. you would like just let me know and I will get it to you at no cost to you. It doesn’t matter who The controversy over the health professional or where you are. verses Sister Elizabeth Kenny methods of treat- ment raged throughout this period but from what This newsletter may be a bit later than usual as I I have read it should never have occurred as po- have been having computer problems which I lio affected its victims in so many different ways hope have now been fixed by the purchase of a new computer which I am learning to use so I and what helped some was not effective for oth- ers. If people had swallowed their pride the best apologise in advance for any deficiencies that treatment was probably a combination of aspects may be present. of both treatments, indeed many of Sister Ken- Unfortunately every time you change computers ny’s ideas have been incorporated into physio- or programs you have to go through a whole new therapy over the years but yet the controversy learning experience which I find rather difficult still rages. with my limited understanding of information What we must remember is that at that time technology (IT). health services, roads and transport were very I hope you had an enjoyable festive season with different than what they are today. family and friends and we can all look forward to One of the most alarming facts is that most of a much kinder 2021. the cases were in rural areas and many of them would never have been reported due to limited communication. A visit to many country ceme- Kind regards, Arthur teries will reveal a disproportionate number of

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In loving memory of Rebecca c.j. round 1930—2020

From page 107 in ‘The Great Scourge’ “Two sisters, Rebecca (eight) and Winifred (thirteen) Lucas, accommo- dated in separate parts of the Laun- ceston hospital, had not seen each other in three years when an older sister brought them together for a photograph.” Their mother rode her bicycle 52 miles from Railton each Sunday for three years to visit them.

The 23rd September, 2020 was a sad day for Tasmania’s polio community with the passing of Rebecca Round (nee Lucas). She was a staunch advocate for polio survivors and was always willing to speak out on our behalf whenever the opportunity arose and used her leadership skills to encourage others to do the same. Rebecca never let her disabilities hold her back and loved travelling, regularly sailing on the tall ship ‘Lady Nelson’ as part of the crew where she was also a founding member of the ‘Lady Nelson Trust’. She also visited Antarctica by ship from South America and was fasci- nated that whilst the humans were told not to interact with the pen- guins these birds did not observe the same rules. Among her many other interests was the Royal Hobart Botanical Gardens where she was a guide for many years. She will be missed.

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A Personal Story. I recently received (Also from the Polio Warriors newsletter) a copy of ‘Le com- munique - Number One of our readers, Ceci Flanagan-Snow, from 8’ from The World- New Brunswick in Canada, wrote to tell us about wide Fellowship of her life over the last few months and how she Polio Warriors and overcame huge obstacles. She was very serious- the front page arti- ly ill at the end of February and went to hospital cle caught my eye. where she had to spend her 70th birthday, then returned home to 'lockdown' because of the Co-

rona virus. Here is her story from this point: Lifestyle and Home Remedies - "I was incredibly from the Mayo Clinic website weak. Between PPS and age I've learned (USA) that I don't bounce ‘Having to deal again with an illness you thought back as quickly as I was in the past can be discouraging or even once did no matter overwhelming at times. Recovering from the ini- how determined I am tial illness required drive and determination, but to simply "get at it". now the late effects of polio require you to rest At that point the re- and conserve your energy. strictions about stay- ing home and practic- Here are some suggestions: ing tremendous Limit activities that cause pain or fatigue - amounts of hygiene Moderation is key. Overdoing it on a good day were in place. In my can lead to several subsequent bad days. condition, quite frank- Be smart - Conserving your energy through life- ly, I was thrilled. I style modifications and assistive devices doesn't could rest and recuperate with no guilt because mean you're giving in to the illness. It just people were being discouraged from any unnec- means you've found a smarter way to deal with essary contact. It was a relief to stay home it. guilt-free. Stay warm - Cold increases muscle fatigue. Our little corner of the world has escaped the Keep your home at a comfortable temperature worst of the pandemic - and I'm grateful. I'm and dress in layers, especially when you go out. now happy to meet up (occasionally) with a few close friends. We sit in someone's garden and Avoid falls - Get rid of throw rugs and loose have coffee and catch up". I've taken up bicy- clutter on the floor, wear good shoes, and avoid cling as a way to get around town, enjoy the slippery or icy surfaces. sights, sounds and smells of the world and get a bit of exercise. BUT, this spring I bought a new e-bike. It has 5 levels of pedal assist so I don't Maintain a healthy life- have to excessively exert myself to get up a hill. style - Eat a balanced If I'm really tired I can ride it like an electric diet, stop smoking and scooter and the battery will get me home (just decrease caffeine intake have to be careful to keep it well charged before to keep fit, breathe easi- setting out - then I'm good for up to 40 km). er, and sleep better. There was a time when I would have eschewed any kind of assistance in my life but now, dealing with muscle weakness due to polio, and age I'm

willing to admit it - I need help sometimes. For Protect your lungs - If your breathing is im- we polio warriors, that's the toughest thing in paired watch for signs of a developing respirato- the world to say. ry infection and have it treated promptly. Don't I was 3 when I was paralyzed by polio and I smoke, and stay current with your flu and pneu- worked my little behind off to overcome it and monia vaccines. regain func- Coping and Support tion. I've Dealing with the fatigue and weakness of post- fought it all of polio syndrome can be difficult physically and my life but psychologically. You might need to rely on your now, if l want friends and family. Don't hesitate to tell them to enjoy my what kind of help you need. Consider joining a remaining support group for people with post-polio syn- years, it's drome. Sometimes talking things over with peo- time to admit ple who have similar problems can help you that help is a cope. Ask your doctor about support groups in good thing." your area.’

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If Rotarians would like to assist they can contact Spinal Life Australia created the brief Ross Duncan, Executive Manager, Member Ser- story below about the online education vices, Marketing and Fundraising on rdun- module and the GP brochure about Late [email protected]. Permission has been grant- Effects of Polio. They have made the ed by Spinal Life Australia (under a Creative brochure for GPs available for others to Commons licence) to reproduce the printed man- use under a Creative Commons Licence, ual for GPs as long as Spinal Life Australia is to enable other interested countries etc acknowledged as the source of the information. to use it without having to seek permis- The brochure is available for download at sion from SLA. https://www.spinal.com.au/resources/post-polio/ This article was taken from the Mornington Ross Duncan, Spinal Life Australia Peninsular Post Polio Support Group News- letter I wish to thank the editor for its use here. What's polio got to do with I have copies of the above brochure which I general practice in Australia ? can supply to you on request. Arthur

A lot, as it happens! GP’s play an essential role in supporting the health and wellbeing of Austral- ians. While there are not definitive figures, it is estimated that there are tens of thousands of Australians who survived polio infections in child- hood years, only to experience a return of polio related issues in their later years. Spinal Life Australia, a disability support agency, specialis- ing in supporting people with spinal cord dam- age, has created what is believed to be the world’s first online education module for GP’s that health professionals can complete as part of their ongoing Continuing Professional Develop- ment. The online education module helps medical pro- fessionals increase their ability to: • Describe the burden associated with the late effects of polio in the Australian population; • Identify patients experiencing the late effects of polio and assess the impact on the patient; • Implement management strategies within a multidisciplinary framework to reduce the burden of late effects of polio, and; • Access resource for supporting patients expe- riencing the late effects of polio. In the first two months since the module became available through online education portal ThinkGP, over 100 medical professionals have completed the module. The feedback indicates that those completing the education module have found it to be rewarding, with more than 90% of enrollees stating that the module met their expectations. As a health professional, you may not be aware of patients living with the late effects of polio, but it is likely you have some patients that sur- vived polio. This online module has been pro- duced to help you identify and better support the polio survivors in your practice. GPs can access the online module by clicking on www.thinkgp.com.au/education/polio2020 Spinal Life Australia has approached New Zea- land, Scotland and Canada to see if they can as- sist in adapting the program for those countries. January 2021 Arthur’s TAS POLIO NEWS Page 6

tests like: “Don’t wanna sleep!” fearing interrup- tion of play and fun. Because their growth de- pends on it, they should not be weaned off the siesta too early. Let us see what an expert rec- ommends. According to Dr. Francoise Delormas, a young child should only be humoured “when it [the si- esta] is not a physiological need for him” any- more. Little children require midday rest until the age of four or six years. Infants up to six months of age need three naps during the day; two naps until one year; and one after 15 months. Some children stop napping after four years; others continue to six. Each child does according to his or her body needs. Mothers should watch for certain indicators. If Is there need for a Siesta? the child does not sleep within half an hour of Mariam A. Alireza, Arab News being in bed in a quiet atmosphere, he or she then does not need the nap. However, if by the WE have all heard or embraced the siesta habit early evening the child becomes grumpy, edgy, at some point in our lives. Siesta is the Spanish or hyper, then he or she should continue taking word for the afternoon nap and qayloulah is its the daily siesta, but with Delormas’ suggestions. equivalent in Arabic. This long-time practice is still respected in the Arab world (the Middle East)  The siesta should be taken immediately after and Latin and Mediterranean countries. It is said lunch or within the early afternoon. The hu- that Prophet Muhammad (PBUH) practiced the man body usually demands it at this time to qayloulah and recommended it. It is an ideal rest and renew vitality for the remaining of way to jumpstart energy and stimulate the brain the day. half way through the day, getting rid of lethargy  The length of nap differs from child to child produced by the noon heat in order to restart and according to his or her body needs. A si- work afresh. esta should neither exceed two hours nor In the West and Northern countries, the siesta is should it be taken after 4:00 pm. It is difficult not observed or not required due their more en- to arouse a child from very deep sleep. Long ergising colder climate and shorter daylight siestas make night sleep come with difficulty hours. However, because of recent longer work- and push it off to late hours. ing hours, health care providers recommend a 20  Avoid total darkness and complete silence. to 30 minute power nap after lunch break to re- Absolute blackness and stillness can give the charge energy and release stress in order to im- child the feeling of night. The child wakes up prove health and work performance. groggy and makes the siesta disturb the A recent Greek study indicated the importance of body’s biological clock. a 30-minute nap after lunch. It reduced heart To convince a small child to have an afternoon attacks by 37 percent in those who napped at nap, you should appeal to his or her intelligence least three times a week for as little as 30 and logic. Show him or her that you, too, need minutes. Blood pressure was shown to decrease the break. Set an example. Explain that a considerably during a siesta of less than an hour. growing child’s body requires sleep to develop. The mere act of sleeping appears to relax the Children can be surprisingly logical. After the heart; produce physiological benefits; lower age of six, children tend to outgrow their need stress; and extend healthy life. for a siesta, because their bodies and brains Rather than relying on stimulants (caffeine and have different demands (moving, running, play- sugars) to restore false energy and alertness, ing, interacting, reading) in order to grow and employees who work long hours should be en- develop. Each child reacts according to his or couraged to nap after lunch in order to refresh her personality, need, and mood. We should al- their enthusiasm and reactivate their creativity in low them the space to develop physically and order to enhance wellness, productivity, and effi- mentally. Their bodies have to grow and their ciency. personalities and talents blossom. They should not be constrained. Watch the process of their On the other hand, extended naps disturb night growth and enjoy it. Play the shepherd who pro- sleep. Studies show that sleep-deprived chil- tects his sheep. Guide them without crushing dren and adults lean toward obesity, because it their creativity and inspiration. encourages midnight snacking. Late sleepers require adjustments to correct their biological Mariam A. Alireza is a holistic science specialist. clock prior to practicing siestas. While siesta This article was also courtesy of the may be optional for adults, it is absolutely neces- MPPPSG Newsletter. sary for babies, toddlers, and young children. Some active children appear to reject it with pro-

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As you all should be aware by now the majority of Australia's Polio Survivors are excluded from the NDIS (National Disability Insurance Scheme) due to the cut off age of sixty five years (65). Polio Australia has been working behind the scenes to have this injustice rectified and the following articles are examples of what is be- ing done to alert those in power of this injustice.

Polio Australia Submission to the Disability Royal Commission Summary Under the National Disability Insurance Scheme Act 2013, disabled persons over 65 are excluded from coverage by the National Disability Insurance Scheme ("NDIS"). Many polio survivors incurred their disability, known as "Infantile Paralysis", as children in the 1950s polio epidemic. Although it happened decades before their 65th birthdays, they are denied access to disability insurance coverage that they would otherwise share with all other disabled Australians. It is patently absurd to punish sufferers of Infantile Paralysis for being too old. Polio Australia contends that banning polio survivors over 65 from NDIS coverage is abusive and discriminatory, and entails an explicit and systemic potentially life- threatening neglect of an entire category of disabled persons. It is abhorrent that they are subjected to a demeaning "welfare" model of assis- tance for disabilities, which involves attempting to shoe-horn disability support into ad hoc Aged Care Packages not designed for addressing disability, whereas all other age groups among disabled persons have the benefit of an individually tailored "insurance" model of assistance under the NDIS. Inevitably, therefore, requirements are not met and the result is neglect. In an additional violation, the Age Discrimination Act2004 ("ADA") was amended especially to forestall complaints against the exclusion from the NDIS. Polio Australia contends that the exclusion is unlawful in that it blatantly infringes, inter alia, Articles 1, 5, and 25 of the Convention on the Rights of Persons with Disabilities (CRPD). The violation is officially conceded in the Explanatory Memorandum to the NDIS Bill 2012. Further, the pre-emptive amendment of the ADA to preclude complaints is inherently an admission of discrimination, being effectively a "pardon in ad- vance." Attempted justifications of the violation fail to meet the Guidelines on Permissible Limitations to Human Rights issued by Attorney-General's Department. Conclusion As well as being unlawful, the exclusion is unconscionable and abusive in that it imposes severe unnecessary hardship upon polio survivors through no fault of their own. It is especially mean-spirited in that the affected polio survivors are a numerically limited closed set of persons, a dwindling cohort in fact. For govern- ment to "wait them out", banking on mortality over time to rid it of people it ap- parently condemns as a burden is clearly unacceptable conduct. Principal Recommendations for Change (others listed in the full Submis- sion) The NDIS Act be amended so that polio survivors over 65 are eligible for the NDIS. The NDIS Act be amended to remove the exclusion of disabled persons over 65.

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The poster below is reproduced courtesy of several Polio Australia Board Members

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January 2021 Arthur’s TAS POLIO NEWS Page 10

those people who forward TAS POLIO NEWS on by email to their own contacts as this al- For most of the past year the board so enables more people benefit from the in- meetings of Polio Australia have formation each issue contains. been held via Zoom, one of a num- Billie is continuing her work with the UTAS ber video conferencing mediums Medical School helping to educate medical that are now available via the com- students about the problems polio survivors puter networks. This is a far better face. Her own experience with open heart method of holding such meetings surgery and orthopaedic issues has enabled than the telephone conferencing her to clearly display to the hospital and al- previously used and due to the lied health staff the difficulties we face when travel restrictions in place owing to undergoing major surgery. My own health the COVID 19 virus this years AGM issues have also made health professionals for Polio Australia was also held via consider that the late effects of polio may be this medium. the cause on many more issues than previ- ously considered. The following is the report for Tas- mania that I prepared for that While she retired from her role with Polio meeting in November. Australia I was pleased when Maryann Li- ethof was appointed to the Board of Polio Australia as an independent member as her knowledge and skills are so valuable to the organisation. Tasmanian Report to Polio Australia Among a number of our contacts to pass away recently was Rebecca Round. Rebecca AGM 2020 was a staunch advocate for polio survivors and was always willing to speak out on our behalf whenever the opportunity arose and Billie Thow and I continue to represent Tas- used her leadership skills to encourage oth- mania on the Board of Polio Australia only ers to do the same. She never let her disa- because no one else has expressed any in- bilities hold her back and loved travelling, terest in doing so. regularly sailing on the tall ship ‘Lady Nel- We have both made it clear that we do not son’ as part of the crew where she was also have the sole rights to this position but will a founding member of the ‘Lady Nelson continue doing it as long as we are able or Trust’. She also visited Antarctica by ship until someone else expresses an interest in from South America and was fascinated that doing so as we believe our state is entitled whilst the humans were told not to interact to representation on any national organisa- with the penguins these birds did not ob- tion. serve the same rules. Among her many other interests was the Royal Hobart Botani- In last year’s report I mentioned our belief cal Gardens where she was a guide for many that there was not enough interest to justify years. She will be missed. the cost and effort involved in conducting information sessions for polio survivors. Prepared by Arthur L. Dobson This situation remains unchanged. We do appreciate the attention been given to polio survivors in this state by Polio Aus- tralia staff but we have still not been able to identify the younger immigrant polio popula- tion that may exist here. TAS POLIO NEWS is the principal means of communication with polio survivors in this state and I wish to thank the editors of the other newsletters who freely share their arti- cles so that the information gets spread as widely as possible. So many more people get to see the articles from Polio Oz News which I include in full in each issue so that those people who don’t have internet access can also benefit from the valuable infor- mation it contains. I also wish to express my appreciation to

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DON’T FORGET The following information to help you cope with the Late Effects of Polio/Post Polio Syndrome are available from me at no cost you. You only have to ask.  The Polio Library (The contents of which were included in the October issue of this newsletter.  The Polio Australia Factsheets (Which have been mentioned a number of times in this newsletter. I have an abundant supply of these and I can bind them into a booklet form if you wish.  The Late effects of polio (A guide to management for medical professionals produced by Spinal Life Australia and recognised by the Royal College of General Practitioners as an Accepted Clinical Resource. It is a useful source of information for anyone wanting to know more about us and our health and disability issues. I am also able to reprint many articles on subjects related to polio and its late effects and supply them to you.

Important Note Please read before proceeding. The following pages comprise the Summer 2020 Issue of Polio Oz News, the news- letter of Polio Australia. In these pages you will find many words underlined and/or advising you to click here or something similar. These messages only apply to the original version of Polio Oz News which is only available online. It can be found by just typing Polio Oz News into your browser. I reproduce this newsletter in a printed format so that those people who don’t have access to an online computer can have access to the valuable information that it contains. The links mentioned above are not available in this version. Arthur

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Volume 10, Issue 4

Polio Oz News December 2020 — Summer Edition

Australia’s Been Free Of Polio For 20 Years

By Emily Doak "I can't move any of my joints from my knee ABC Riverina down, but I've never had the movement in the joints from my knee down anyway—you don't Australia's been free of polio for 20 years, miss what you don't know," he said. but doctors say we still need to vaccinate "When I was about 11 years old I went into hos- Source: www.abc.net.au—30 October 2020 pital for about two months and I had a big opera- It has been 20 years since Australia was declared tion called a triple arthrodesis, where they sort of free of polio, thanks in no small part to the intro- cut the muscles and fuse your ankles to keep duction of vaccines in the 1960s—but doctors say them at the right angle. I had to repeat a year it is still important to get the jab. of primary school, I had the callipers, the full bit. My Dad knew some boot makers and they made Key points: me a little pair of football boots, everything had • Polio is a highly infectious disease that can to be specially made." lead to long-term disability, paralysis and Mr Wait said despite the challenges he had never death let the impact of his polio stop him from doing • Australia has been polio-free since 2000 what he enjoyed. "Even when I was in my teens I went to the As many as 40,000 Australians experienced • school counsellor and said I wanted to work in paralytic polio in epidemics during the 1930s the motor trade," Mr Wait said. and '50s He was told he would be better off working in a The vaccine is included in the Australian child- bank, where he could just stand behind a coun- hood immunisation schedule. ter. According to paediatric infectious diseases spe- "I wasn't having that," he said. "I got an appren- cialist Phil Britton, from the Children's Hospital at ticeship with the NRMA as a panel beater from Westmead, 95 per cent of Australian children get there a few other panel shops and then eventual- vaccinated. ly TAFE teaching—yeah, I've had a good life. We "Australia got rid of polio through vaccination still go away in the caravan and I've just bought and needs to maintain this because there is still myself a little mobility scooter for getting around. polio in the world," Dr Britton said. "We think I think there's a lot worse off than I [am]." part of our global responsibility to the children of the Photo: world is to continue Wagga Wagga to maintain Aus- man Doug Wait tralia's polio-free contracted polio status because we when he was are aiming for eight months eradication of this old and can't infection." remember life Living With Polio without the im- pacts of the dis- Wagga Wagga resi- ease. dent Doug Wait was eight months (ABC Riverina: old when he con- Emily Doak) tracted the dis- ease.

National Patron: Michael Lynch AD CBE

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[Polio Oz News Page 2]

Polio Australia Representing polio survivors throughout Australia PO Box 500 Kew East Victoria 3102 Phone: +61 3 9016 7678 office@polioaustralia. org.au

President—Gillian Thomas OAM [email protected]

Vice President—Gary Newton [email protected]

Secretary—Maryann Liethof mar- [email protected]

Treasurer—Alan Cameron [email protected]

Editor—Maryann Liethof [email protected]

Inside This Issue Australia’s Been Polio Free for 20 1 Years Presidents Report 3 From The Editor 3 Clinical Practice Workshop Update 4 Vaccines And Viruses 4 Community Programs Update 5 Health Professional Outreach 6 Polio Awareness Month 2020 6 Supporting Polio Australia 7 More About Australian Polio Sur- 8 vivors Nutrition and Immunity 10 Polio Survivor Reflects 12 Polio Survivors Receiving Awards 13 New SLA Resources For GPs 15 GPs And NDIA Collaborate 15 The Eradication Fight Must Go On 16 Couch Conversations 18 David Onley’s Polio Story 19 Royal Commission Reports 20 Polio-Related Research 21 GPs Called To Help 22 Nerve Pain Explained 23 Could Covid-19 Lead To Measles 24 The Campaign To Wipe Out Polio 24 Unless otherwise stated, the articles in Polio Oz News may be reprinted provided that they are reproduced in full (including any references) and the author, the source and Polio Australia Inc. are acknowledged in full. Articles may not be edited “There shall be eternal sum- or summarised without the prior written approval of Polio Australia. The views mer in the grateful heart” expressed in this publication are not necessarily those of Polio Australia, and any products, services or treatments described are not necessarily endorsed or recom- ~Celia Thaxter~ mended by Polio Australia. January 2021 Arthur’s TAS POLIO NEWS Page 14

[Polio Oz News Page 3 ]

President’s Report “still here”! Probably like many of you At our recent Annual General Meeting (held via as we spent more time Zoom) we welcomed two new members to the than usual at home this Board: Helen Leach, representing Polio SA, and year, I have been discover- Ian Holding, representing Polio WA. There were ing some interesting videos also some Executive changes: Gary Newton was on YouTube. Recently, elected as Vice President, and Maryann was these have included the elected as Secretary. Profiles of all Board mem- many works of musician, bers can be found here. On the reporting side, satirist and mathematician our 2019-2020 Annual Report can be read online Tom Lehrer. The title of or downloaded here, while our 2020–2022 Stra- his 1965 live album “That tegic Plan is available here. Was The Year That Was” seemed to sum up 2020 for me! My year was a Following the AGM, we heard from our National series of ups and downs — if yours was the Patron, Michael Lynch AO CBE, who brought the same, I hope there were more ups than downs, Board up to date on his promotional endeavours and that 2021 will be more stable for all of us. on our behalf. Polio awareness and Polio Australia both got a We are farewelling our Resource Manager, Dar- great publicity boost early in the year with a 4- lene Felsch, this month. Darlene has been work- page spread in the Good Weekend magazine. ing with us since August 2019 and has been a Not long after, the country was grappling with great help in setting up a number of policies and the challenges of COVID-19, and parallels were procedures in both finance and human resource soon being drawn with previous polio epidemics. management, as well as providing secretariat As a result, I was invited to participate in an epi- services to the Board and assisting the Team sode of the ABC Radio Big Ideas program with funding proposals. With her contract con- “Vaccines and viruses: a history of pandemics” cluding, Darlene is moving on and we wish her (p4), fittingly broadcast at the start of October’s well in whatever direction her career now takes Polio Awareness Month. The remainder of Octo- her. ber was frenetic with many media interviews and On behalf of both the Board and the Team, I the opportunity to co-write an Op-Ed (p16) wish you Seasons Greetings — we look for- with Sarah Meredith, from Global Citizen, on ward to continuing our advocacy, infor- polio eradication and the need to keep sup- mation and education services for you over porting polio survivors — because we are the coming year. Gillian From the Editor 2020 has certainly will, undoubtedly, be a familiar story for been a year to remem- many readers. ber—and to forget! I’m sure most of us are General Practitioners (GPs) are featured in three breathing a sigh of relief articles (pages 15 and 22), and it’s excellent to that it’s almost over . . . see our front-line medical practitioners so en- However, believe it or gaged. not, there has still been a Recommendations from the Aged Care Royal lot going on in relation to Commission have been summarised for rele- things-polio — as you will vance to polio survivors (p20); although the Dis- read in this bumper edi- ability Royal Commission Report (p21) continues tion! The Polio Australia to be a ‘work in progress’. Many articles look at Team has continued providing what services they the need for polio eradication to continue. Alt- could throughout the year, and have all provided hough Australia was declared polio-free 20 years their program updates. ago, the fight continues in other countries — es- COVID-19 has challenged all of us in many and pecially with the added complication of COVID- varied ways, which is reflected in several of the 19. Could COVID-19 Lead To Measles And Polio articles included in this Summer Edition of Polio Epidemics and The Campaign To Wipe Out Polio Oz News. If one of your challenges has been ad- (p24) provide detailed descriptions of the com- hering to a less-than-ideal diet, then Melinda plex reasons why we are still battling with polio Overall’s piece on Nutrition And Immunity (p10) and other viruses such as measles. might just nudge you back on track. I hope these, and the numerous other bits and Past President, Dr John Tierney, and current pieces I have curated for this edition, are of in- President, Gillian Thomas, have been recognised terest. I am now editing Polio Oz News on a vol- for all their passionate work over the years on untary basis (having ‘retired’ in 2019) but still behalf of polio survivors (p13); and John has manage to find much to inspire me in the ‘polio turned his skills to writing Opinion pieces for the world’. Best wishes for The Season! print media. In The Last Great Epidemic (p12), he reflects on his own experience of polio which Maryann

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[Polio Oz News Page 4 ] 2020 Program Update: Clinical Practice Workshops By Michael Jackson Spinal Life Australia Healthy Living Centre in Polio Australia Clinical Edu- Cairns. There I delivered 3 workshops and a cator community session (on behalf of Steph who was stranded in Melbourne!), and also presented at a This year has clearly been local Rotary Club meeting. It was a hectic few an unusual one for this days but it was rewarding to get out and deliver program. 2020 started the workshops and meet survivors in a location with a complete staff Polio Australia staff had not visited before. change— Paul Cavendish had handed on the role to Three workshops were set up to be delivered via me in late 2019, and in Zoom in mid-November, mid-December, and mid January Rachel Ingram -January. The November session had three pro- moved on with her assis- fessional attendees and went smoothly on quite tant role being taken up by Paulette Jackson in limited advertising. We currently have 13 regis- late March. Paulette has done a tremendous job tered for the Zoom workshop in December, and 6 assisting the clinical educator and the rest of the in January. If this mode of delivery proves to be team this year. viable, we will seek to offer the workshop via this mode as well as live throughout 2021. The coronavirus pandemic arrived in mid-March just as numerous workshops were due to take A workshop was scheduled at Port Pirie, SA in place. This resulted in many other work-from- early December, however several days after home projects coming to fruition in the absence plans had been finalised the Adelaide outbreak of multi-state travel for the workshops. occurred, necessitating rescheduling of the work- shop and a delay in visits with other profession- Workshops Delivered in 2020 als, survivors and facilities in Adelaide. A Toowoomba workshop was cancelled in mid- Over the winter a four-part online webinar series March due to low registration before the event. was presented and recorded as foundation infor- 16 other workshops scheduled in 2020 were also mation for health professionals, drawing on some cancelled due to the pandemic, with the intent of of the workshop material. Professionals receive rescheduling when facilities were re—positioned no professional development credit for viewing for live education and travel between states was these videos, but they can access recorded infor- unrestricted. Rescheduling took place optimisti- mation on the topic at their own convenience. cally for regional Victorian workshops in late win- These videos are also being used to supplement ter, but then the outbreak in Melbourne oc- an e-Learning course for aged care workers. curred, requiring a further reschedule into 2021. This course is in development and due to be In early November I was able to visit the new rolled out in early 2021. Vaccines And Viruses: A History Of Epidemics With Paul Barclay Big Ideas: ABC Radio National Program Duration: 56min 28sec Broadcast: 4 Oct 2020 Recorded: 29 Sep 29 2020. Collabora- tion with the National Museum of Austral- ia COVID-19 seems like a contagious virus without parallel, but Australia has been hit by devastating pandemics before. The Spanish flu killed 15,000 Australians in 1919, smallpox decimated the Aborigi- nal population, HIV/AIDS once claimed 1000 Australian lives a year, and polio caused paralysis in tens of thousands. This panel discussion examines the history of viruses and vaccines and their impact on Australian so- ciety and science. Speakers Peter Doherty—Laureate Professor, Microbiology and Immunology, University of Melbourne; winner, 1996 Nobel Prize for medicine. Dr Peter Hobbins—historian, Artefact Heritage Services, University of Sydney, State Library of NSW. Gillian Thomas—President, Polio NSW, Polio Australia.

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[Polio Oz News Page 5 ] Community Programs Update

By Steph Cantrill (check the time in your location!)—Aged Care Community Programs Man- Question and Answer session. We’ll have a ager representative from the Department of Health talking to us about aged care services and an- As this rather unusual year swering your questions. draws to a close, we are looking towards 2021 with To register for this session, please go to: some hint of optimism for www.bit.ly/PolioAgedCareQandA. the return of face-to-face Zoom Chats As well as webinars, we’ve also had events for our community a number of more informal Zoom meetings. It programs. But this has was great to get people together over Polio definitely been a year of Awareness Month to share their stories and learn learning, and switching to from each other. There have been a few votes virtual sessions has had some lasting positives for monthly open Zoom chats to continue on an for sure. ongoing basis— watch this space! We’ll definitely Videos do our best to continue the regular virtual chats through 2021 as we return to the busy schedule In the last few months, we have slowed down a of face-to-face sessions. bit on making videos, but they’re still available for viewing. Check at our YouTube channel, click We’ve also had a couple of smaller chats, specifi- “Playlists” and select “2020 Videos for Polio Sur- cally for people who are already NDIS partici- vivors” (or any of the other playlists you’re inter- pants and those who think they’re eligible for the ested in viewing). Alternatively, you can go to NDIS. This is a good way for people to share tips the Polio Australia Facebook page and click on accessing the scheme and getting the most “videos”, and scroll through the range of videos out of your plan. we’ve posted there. Please contact me at [email protected] Webinars if: The last few months saw a spate of Zoom webi- • You are interested in joining our future NDIS nars for the polio community, which were well- chats attended and greatly appreciated. We’re ex- • You would like to be update about any other tremely grateful to our presenters, from a range Zoom chats of health professional and lived experience back- grounds, for giving their time to share valuable • You have ideas for future webinars information with us. The recordings of those vid- I would like to wish everyone a very happy fes- eos will be viewable on our YouTube channel and tive season, and I hope you are able to connect Facebook page soon. with loved ones despite some ongoing re- Our next webinar is on the 14th of December at strictions. Here’s to a fresh start in 2021! 11.00am Australian Eastern Daylight Saving time

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[Polio Oz News Page 6 ]

Health Professional Outreach

By Michael Jackson • Spinal Life Australia for GP resources and Polio Australia Clinical Educator planning a Brisbane conference The Clinical Advisory Group now has 18 mem- • Dr Nigel Quadros to write a MedicSA article bers from a diverse range of specialty fields who and develop a telehealth clinic concept are able to comment on post-polio questions and • DiverseWerks to have CALD translation of our topics. A LinkedIn professional group has been Migration Services fact sheet operating for a few months now with Clinical Ad- visory Group members, serving as a discussion • University of New England researchers to platform for members using LinkedIn. write and publish a meta-analysis and system- atic review Three clinical topic videos were created and pub- lished on the Polio Australia YouTube Channel, • The University of Queensland Rural Clinical and are freely available for viewing. School to developing rural LEoP education op- A research study written in partnership with UNE portunities academics, Evaluation of exercise for people who • HealthPathways to publish a LEoP pathway in are polio survivors: A systematic review and me- Metro South Queensland ta-analysis, has been reviewed and is undergoing edits, with a publication timeframe within the • The National Disability Insurance Agency to next few months. create a LEoP Snapshot for NDIS providers Partnerships The Year Ahead Numerous partnerships were developed during Looking forward into 2021, we anticipate that the year to work on various projects where our live workshops will resume in February after the capacity to do so would have been limited other- distractions of Australian clinicians’ summer holi- wise. The quite diverse list includes: days have passed. In the short to mid—term, it is obvious that the delivery of any live workshops will be contingent on mitigating for and contain- ing any COVID outbreaks across each Australian state. Despite this uncertainty, we have many projects to complete and opportunities to take to reach our program outcomes.

Polio Awareness Month 2020

By Paulette Jackson • And finally, Global Citizen partnered with RE- Administration Officer SULTS AU, UNICEF Australia, Rotary Interna- tional, and Polio Australia to host a World Po- In October, we celebrated lio Day event on 21 October (you can view Polio Awareness Month the event here). and the theme was Past Pandemic Survivors. Bunnings provided a generous donation to sup- With the acronym of PPS, port our Treasure Hunt where we asked you, our you can see what we did members, to find unknown polio survivors. We there… had two lucky winners who found survivors, and each winner received $250 in Bunning’s gift It was a busy month with cards. a lot happening. The staff were also busy with various media out- • Maryann put together a pictorial review of lets. Polio Australia’s 10 years of Polio Awareness Month campaigns. There were articles in The Senior, Croakey, and Illawarra Mercury. Big Ideas, ABC Focus, and • Steph hosted weekly Zoom Sessions where ABC Australia Wide interviewed Gillian Thomas polio survivors shared their stories and dis- and Alan Cameron. Also, Gillian, Steph and Mi- cussed various topics. chael spoke at various Rotary Clubs. You can check out all of our articles and interviews on our Dr Stephen de Graaff, a rehabilitation physi- • Media Coverage Page. cian based out of Victoria was kind enough to host an informative Question & Answer ses- Overall, it was a successful month of awareness, sion with polio survivors. education, support, and outreach. The Polio Australia staff look forward to next year! • Many survivors also shared their stories on our Still Here website.

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[Polio Oz News Page 7 ] Supporting Polio Australia Polio Australia would like to thank the following individuals and organisations for their generous sup- port from September to November 2020. Without you, we could not pay our rent, core operating ex- penses, or management staff! If you would like to see how your ‘living bequest’ can support polio survivors now, click on the follow- ing link: www.polioaustralia.org.au/donations-bequests/ or contact the Polio Australia office on Ph: 03 9016 7678 or Email: [email protected].

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[Polio Oz News Page 8 ] More About Australian Polio Survivors By Michael Jackson Polio Australia Clinical Educator Our late 2020 survey has yielded some interesting preliminary information. 183 polio survivors have responded to date, reporting on their post-polio related health, their changes in ability over time, their use of health professionals, and their support services use. This group alone represents over 12,000 years of lived polio experience! 35% of the respondents to this survey had not completed the other survey we did early in 2020, which had 734 respondents. Combining these totals, at least 800 unique Australian polio survivors have responded to our electronic surveys in this year. For this article, several items from the current survey have been selected for further discussion. Oth- er aspects will be investigated in future PONs. Current Worst Symptom Only one symptom can be chosen on this question—a different question asks about all current symp- toms being experienced. The un-labelled symptoms were each reported less than 5%, and the ‘2 more’ noted on the key were sleeping difficulty and restless legs. Health professionals are likely to ask this question of the polio survivors they treat, so it is useful for them to know the most usual worst symptoms reported by the survivor group. Focussing on and im- proving someone’s worst symptom can have a big impact on quality of life. It is no surprise to see on this pie chart that fatigue (23%), muscle weakness (20%), and polio- specific pain (11%) are the most common responses for this question.

Mobility Profile This question asks about how a polio survivor moves in their environment. Only one level could be chosen. These levels are related to the numerous functional ambulation levels used in research on walking ability. This information helps health professionals understand a polio survivor’s equipment and education needs, and fall risk. The chart (following page) shows us that of those who responded to this survey, 38% require no bracing or devices to walk, and 19% rely to some extent on a wheel- chair or scooter to be mobile. It is important for professionals to be aware of this variability in mobili- ty so that they are ready to help a survivor presenting at any functional level. (Continued on page 9)

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[Polio Oz News Page 9 ] More About Australian Polio Survivors (Continued from page 8)

Support Service Use The majority of respondents to the survey used some combination of support services, but 31% used none of the services listed. Any service that was used by a respondent could be chosen on this ques- tion. The average age of the respondents is 73 years old, and this explains why the NDIS option has a low percentage. 25% of respondents only used Aged Care. However, 52% of those using Aged Care also used at least one additional support service. This reinforces Polio Australia’s position that Aged Care in itself does not provide enough support for many aged polio survivors. Only 16% of respondents using the NDIS in this survey used another service. Polio Australia continues to work to improve the availability of appropriate level of services to meet the needs of those who do not qualify for the NDIS.

Thank you to those who have responded to our survey to date! The survey remains available for polio survivors to fill out through to the end of this year if you were not aware of this earlier. The larger the number of survivors responding, the surer we can be with the information provided. Add your responses now! The background information on the survey is here: www.polioaustralia.org.au/polio-survivor-survey-health-abilities/ The direct link to the survey is found here: https://forms.gle/VPYYnGz5aaeuiLtU7

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[Polio Oz News Page 10] Nutrition And Immunity

By Melinda Overall JP • Eating a healthy and varied diet to obtain a Nutritionist and Counsellor—Overall Nutrition wide range of immune-supporting vitamins and minerals. The immune system is a complex beast that acts as the body’s defence system helping to fight • Getting some sunshine for vitamin D which threats including, bacteria, viruses, fungi, para- plays an important role in modulating the im- sites and microbial toxins. The immune system mune system. incorporates many different organs, cells, and • Practising good personal hygiene. tissues such the skin, spleen, thymus, gut, lymph nodes and tonsils/adenoids, lymph fluid, • Practising proper food hygiene and handling. bone marrow, specific cells, enzymes, and stom- • Engaging in exercise and/or movement as ach acid. you can tolerate: exercise is anti- Broadly speaking we have two lines of defence. inflammatory and promotes circulation of Innate immunity is our first line of defence, it is white blood cells that play a key role in im- non-specific and aims to prevent threats enter- munity. ing our bodies (it includes our skin). Adaptive immunity, or acquired immunity, our second line • Managing stress: stress encourages the re- of defence, targets threats specifically. It takes lease of pro-inflammatory cytokines time to develop and activate. The body produc- (chemical messengers) and can encourage es antibodies when exposed to a threat such as the reactivation of latent viruses. a virus or bacteria. Once developed, antibodies • Meditation: meditation and massage have remember what the body has done on previous been shown to improve immune system func- threat exposure, and when next we are exposed tion, reduce blood pressure and stress. to the same threat, adaptive immunity activates more rapidly and effectively. • Sleeping well: sleep supports the initiation of an adaptive immune response, promotes Many seem to focus on immunity during autumn healing and reduces stress. and winter which coincides with cold and flu sea- son. Now that we have moved into summer and • Reducing smoking: smoking impacts the Covid-19 seems mostly under control in Australia body’s ability to produce proteins to make and New Zealand, it’s easy to take our immune antibodies and reduces levels of antioxidants systems for granted. It’s hot, it’s sunny, and it’s in the body. not cold and flu season, so why worry about the • Reducing alcohol: alcohol can increase in- immune system now? flammation and cause dysfunction of the im- Often through flu and cold season many people mune system. try to ‘boost’ their immune system with high doses of vitamin C or echinacea. The reality is • Managing weight. that like all other body systems the immune sys- Wherever possible it is important to use food in tem requires year-round support as it needs to preference to ingesting nutritional supplements be able to move into action whenever we are to support your immune system. If you think exposed to common threats such as colds & flus, that you can’t get enough nutrition through your food poisoning, water contamination, diseases diet then supplements might be appropriate but that lay dormant after exposure/symptoms it is important to consult with a nutritionist, (Epstein-Barr virus that causes glandular fever, pharmacist or other health practitioner before Varicella zoster that causes chicken pox and taking any supplements including anything ‘off shingles) and many others. the shelf’ or ‘over the counter’ as they may in- A robust immune system won’t mean that we teract with medications. never get sick but we might have fewer illness- Good health and a robust immune system need es, shorter illnesses, milder symptoms and bet- constant work even when it’s not cold and flu ter recovery from illness. Interestingly, recent season. observations suggest that dysregulation of the Go well. immune system is common in people with post polio syndrome (Singh et al, 2019). Reference Can we boost our immune system or should we Shing, S. L. H., Chipika, R. H., Finegan, E., Mur- aim to support its regulation? ‘Boosting the im- ray, D., Hardiman, O., & Bede, P. (2019). Post- mune system’ is a popular theory but my think- polio syndrome: more than just a lower motor ing is that trying to boost the immune system in neuron disease. Frontiers in neurology, 10. times of need won’t be as effective (or perhaps even possible to the extent required) as support- ing the immune system year-round. So my view See page 11 for Melinda’s Nutrient Table is that our best bet for developing a robust im- mune system and good health looks a little like this:

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[Polio Oz News Page 11 ] Nutrients That Support The Immune System

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[Polio Oz News Page 12 ] Polio Survivor Reflects On The Last Great Epidemic

Opinion Piece By Dr John Tierney AM the notorious Double Thomas Splint (a diagonal Source: newcastleherald.com.au cross shape), was designed to keep the child's body limbs immobilised and straight. Medieval —28 October 2020 torture chambers would have been proud of such an invention. I was unaware of this suffering as I made my pilgrimage from Eden on the far south coast of NSW to the Camperdown Children's Hospital in Sydney for my annual checkups. The visits through the wards containing dozens of young polio survivors were traumatic. Many were in iron lungs because they would die within 10 minutes if they were taken out of these breath- ing machines. The 'luckier' ones were immobi- lised in hospital beds. There has never been any treatment to cure polio or its deadly after- effects. PAST EPIDEMIC: John Tierney pictured last year when he received a Queens Birthday Honour for In the polio children's wards, parental visits were his role as patron and past president of Polio often not encouraged. For these preschool chil- Australia. Picture: Simone De Peak dren, it was felt that the departure of the parents after the visits could be 'upsetting'. Sometimes On a hot January afternoon in 1946, the country parents could only ever see their young disabled doctor hurried from attending a polio case at a children through glass screens. Even now, PTSD home in Cooma to the local hospital to deliver counselling is needed for many of these polio me. survivors in their later years. Ten years before the Salk vaccine became avail- However, there were some useful techniques for able, the doctor brought the poliovirus with him stopping the limbs becoming more distorted, but on his fingers. It was a pity that he didn't wash these were uncomfortable, painful and some- his hands more thoroughly. Ten thoughtless times had long-lasting effects. Even now, at seconds dramatically switched the direction of night, I never sleep on my back. Why? Because my future life path to one of slow deteriorating between the ages of two and seven, I had to physical disability over 74 years — so far. sleep in this position with my left leg in a fitted Only people over 70 would recall the terror that plaster cast. This could be easily slipped on be- families felt during the polio epidemics that fore bed. However, with the weight of the plas- blighted Australia about every 10 years between ter, I couldn't turn on my left or right side. 1910 and 1960, before the widespread use of the When I reached my 40s, I developed terrible Salk and Sabin vaccines. back trouble. An MRI image revealed that I was The poliovirus presents like flu, but overnight it developing the Late Effects of Polio (LEoP). In can do irreversible damage to the body's nerves, 1994, the scan revealed: spinal scoliosis and ste- muscles and joints. nosis, collapsing disks in the lumbar region, ar- thritis, and three bone spurs growing into the When polio strikes, it kills off many of the nerve spinal canal, giving the cord at these points very connections that run from the brain down the little wriggle room. Managing this condition spinal cord to the muscles. The remaining properly is vital when your body is deteriorating nerves then unevenly pull on the skeleton. Polio at between 2 per cent and 6 per cent a year. will do more damage to either the left or right Where you are on this spectrum depends a lot on side and the top half or the bottom half of the how you exercise. For the past 15 years, I have body. In my case, it was lower and left. stayed on the 2 per cent side, by doing 30 My worst damage from polio was initially in my minutes of gentle hydrotherapy three times a left leg and foot, leaving me with a thinner and week. shorter leg. During the day, to assist with keep- My 74-year journey with polio and its late effects ing the leg straight, I wore an iron calliper on my have created some gaps in my life, but we play left leg until the age of 12. the cards that we are dealt. I would have loved In my 1950s childhood, hospitals were part of an to have skied like my father, or played golf twice annual routine for tracking my ongoing disability a week into my 70s like my eldest brother, or caused by polio. I was one of the lucky ones be- gone a lot further in championship tennis. Danc- cause I only went for checkups. ing has been another big gap. Pam, my wife of Many years later, I heard shocking stories from 52 years, is an accomplished dancer. She really drew the short straw with me. fellow polio survivors who had been kept in hos- pitals for years of ongoing therapy. One device, (Continued on page 14)

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[Polio Oz News Page 13 ]

Polio Survivors Receiving Awards Former Polio Australia President, Dr John Tierney AM PhD, and current President, Gillian Thomas OAM, have both been awarded Australian Honours, recognising their outstanding service and contri- butions to Australia’s polio survivors. This was in June 2019 and January 2020 respectively. Howev- er, before they could receive their medals, along came Covid-19. Australian Honours and Awards recognise the outstanding service and contributions of Australians. Recipients come from right across the country and from all walks of life. While some well-known peo- ple receive awards, many more are known only to those they help and serve day-in day-out. All re- cipients are worthy of recognition and celebration. John and Gillian were finally awarded their medals on 17 September 2020. As both recipients live in New South Wales, the Investiture Ceremony was held at Government House, Sydney, hosted by Her Excellency, The Honourable Margaret Beazley AC QC. The Ceremony was livestreamed for those who were unable to attend the presentation due to severe- ly limited numbers. Click this link if you would like to view the presentations. Video timing is at 11:15 for John and 21:55 for Gillian.

Polio Australia and Polio NSW President, Gillian Thomas (left), had a busy September, also receiv- ing a NSW Volunteer of the Year Award: Sydney City and Eastern Suburbs. The NSW Volunteer of the Year Awards are an an- nual program run by The Centre for Volunteering to recognise the outstanding work of volunteers in every region across NSW. The awards are in their 14th year and have grown to become one of the largest celebrations of volunteering across Aus- tralia. The Centre for Volunteering CEO Gemma Rygate Gillian receives NSW Volunteer of the Year Awards: Syd- said: “The past 12 months have thrown up chal- ney City and Eastern Suburbs by Zoom on September 29 lenge after challenge for communities across the state and volunteers have continued to give their all in the face of this tremendous adversity. “These awards are our way of saying thank you and reminding everyone across the state of the value of volunteering. “Congratulations to our awards winners announced today and thank you to all our finalists, nominees and the volunteering community across NSW.” Click this link if you would like to view a short promotional video of the NSW Volunteer of the Year Awards. Gillian appears towards the end at 0.57 mins. - Ed

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[Polio Oz News Page 14 ] We’re Still Here! 2020—Fourth Runner Up Lyn Glover, Gold Coast, Australia Source: Post-Polio Health International—October 2020 I have been the Facilitator for the Gold Coast Post Polio Network for 12 years now. We are under the banner of Spinal Life Australia here in Queensland of which I am a volunteer. We have Monthly Meetings and Guest Speak- ers, who I organise. I also outsource information on polio, newsletters, e-newsletters, and articles, which I take along to these meetings as well. I have 40 polio survivors of which 25+ attend these Monthly Meetings. We are all so different. Some members have a visible disability and others don't, but we are all in this battle together. We have lost one member who was at a nursing home in this pandemic. Gold Coast Post Polio Network are very upbeat and friendly. We care for each other, which is why these meetings are so important in accessing the community. Our current project is collecting and recycling postage stamps and selling them to collect enough $AUD for collared shirts with our logo to wear proudly at meetings, events and out in the community. My Monthly Meetings were suspended due to the pandemic. My last meeting was in March. So Zoom, Facetime, Facebook, mobile, and emails were my main contact with my Polio Family. I spent most days at home and only went out in the community for doctor appointments or shopping. I was able to catch up with both of my daughters and grandchildren as restrictions were lifted. I was also able to attend online church service every Sunday, which was a blessing. I also attended prayer group via Zoom on a Thursday. During the pandemic, my younger daughter got married, and we were blessed with a birth of a baby girl. I still to date wear my face mask which my eldest daughter made for me. I also self-distance, when possible, use wipes, and am very aware of my surroundings when I go out—being a polio survivor for now 62 years. Memories I have of polio are the sound of the iron lung, being put in a cot with iron bars like a cage, my double Thomas splint, and only seeing my family once a week through a glass window. A yellow cross was put on my family's door to notify POLIO was present, that is why I won- der now what the future will hold for survivors of Covid-19. See all October’s Polio Awareness “We’re Still Here! 2020” Award Winners on Post—Polio Health International’s website here

Polio Survivor Re- flects (Continued from page 12) Sometimes, but not often, I reflect on what might have been. I am not a vengeful person, but if I could find that careless doctor who de- livered me in 1946 without washing his hands thorough- ly, I would sue the bastard. Newcastle East's Dr John Tierney AM is a former president of Polio Austral- ia and was awarded an AM in 2019 'For signifi- cant services to polio sur- vivors'. October 25 was World Po- lio Awareness Day.

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[Polio Oz News Page 15 ] New Spinal Life Australia Resource For GP’s

GP’s And NDIA Collaborate On NDIS Resources GP’s And NDIA Collaborate By Kymberly Martin Source: Freedom2Live.com.au—4 November 2020 The Royal Australian College of General Practitioners and the National Disability Insurance Agency have developed new resources to help GP patients with disability navigate the NDIS. RACGP spokesperson, Dr Lara Roeske said the new resources are a positive step forward to improve the experience for patients. “We welcome this opportunity to engage with the NDIS,” she said. “GPs play an important role in helping patients navigate the scheme and a GP is often the first place people turn to for healthcare and is also a key entry point for patients to the NDIS. “GPs are often involved in the crucial early stages of working through a patient’s potential scheme eligibility. We assist patients with information gathering, providing relevant documents and supports, and remain caring for our patients throughout their NDIS journey.” (Continued on page 16)

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GP’s And NDIA Collaborate (Continued from page 15)

As a mother and carer of a son living with disa- bility, Roeske said that navigating the NDIS can be challenging. “GPs have also found it difficult and we recognised there was great scope to im- prove the involvement of general practitioners, and in turn, the experience for patients.” NDIA spokesperson, Shannon Rees said the NDIA was grateful to the RACGP for its feedback and support to ensure these new resources in- formed GPs about NDIS criteria, the process of eligibility and accessing the scheme. “It was important that we developed resources that were practical, informative and useful. These resources have been co-designed with GPs, for GPs—so they can more easily support their patients who might want to apply for the The introduction of independent assessments, NDIS.” which will remove existing barriers to accessing the NDIS in addition to these resources, supports The new GP resources include a suite of practical training videos, a checklist guide to considering a a more streamlined process for patients seeking NDIS access. patient’s NDIS eligibility and a brochure with in- formation on how other stakeholders, including The resources are available online here. NDIS partners, allied health professionals and practice nurses, can support patients to navigate the NDIS.

The Eradication Fight Must Go On

20 Years After Australia Was Declared Today, 29 October, marks the 20th anniversary Polio-Free, The Eradication Fight Must of Australia being declared free of polio, an infec- Go On tious disease that terrified the community through the 1940s and 1950s in particular, and Editor: Marie McInerney continues to impose a “sting in the tail” for polio Authors: Sarah Meredith and Gillian Thomas survivors today. Source: www.croakey.org—29 October 2020 The world is just a beat away from total eradica- tion, with the disease now only still endemic in Afghanistan and Pakistan, but COVID19 has dis- rupted efforts — more than 50 million children worldwide missed their essential polio immunisa- tion this year. In the article below, Sarah Meredith (far left in the feature image), Country Director of Global Citizen Australia and Gillian Thomas OAM (front), polio survivor and President of Polio Australia, mark the anniversary and call on the Australian Government to commit an extra $10 million to the Global Polio Eradication Initiative and to con- tinue supporting polio survivors in Australia. Sarah Meredith And Gillian Thomas Write: As Australia celebrates its 20th anniversary of being polio-free today, cases of this highly con- tagious virus continue to circulate in Central Asia, and the battle to reach every last child globally with the polio vaccine is more important than ever. (Continued on page 17)

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The Eradication Fight Must Go On (Continued from page 16)

The 20th anniversary marks the Royal Commis- child would become too upset once visiting time sion for the Certification of Eradication of Polio- was over. This commonly led to long-lasting myelitis confirming that, based on a range of ev- feelings of abandonment. idence, there is no transmission of wild po- Other recurrent themes are of houses being fu- liovirus in Australia. migated, being strapped into splints, months or It is hard to believe it was only 64 years ago even years spent away from home undergoing that Australian children were immunised with the treatments, working hard and long to get move- Salk polio vaccine for the first time and Australia ment and function back, and of sounds and must continue to maintain vaccine herd immuni- smells recalling vivid and often unpleasant mem- ty to keep the disease at bay while polio still ex- ories of those times. ists in the world. Polio survivors became resilient, driven and suc- While applauding the success of polio immunisa- cessful. But they would rather have been im- tion in Australia and acknowledging the critical munised. challenges currently facing the Global Polio Erad- Lessons From And Threats For Polio ication Initiative (GPEI), we must not forget the legacy this terrible disease has left on our coun- The world has fought hard to eradicate polio, and try. we are 99.9 per cent of the way there but the risk remains. For decades before the Salk vaccine became available, polio epidemics had regularly been Despite now only being endemic in just two terrifying our community, leaving thousands of countries, Afghanistan and Pakistan, polio has Australians paralysed in their wake — mostly the potential to affect up to 200,000 people per children. year within 10 years if left unchecked. The World Health Organization (WHO) states The COVID-19 pandemic also poses serious that one in 200 polio infections will lead to irre- threats to eradication goals, after door-to-door versible paralysis. Amongst those paralysed, 5- vaccination campaigns were paused in March be- 10 per cent will die when their breathing muscles cause they did not comply with global physical become immobilised. distancing recommendations. Much like COVID-19 today, poliovirus can spread As a result, more than 50 million children world- fast, far and wide and undetected, spreading wide missed their essential polio immunisations rapidly before cases of paralysis are seen. this year. As most people infected with poliovirus have no The race is now back on to recommence vaccina- signs of illness, they may never know they have tion programs. been infected. However, they are still infectious The world’s efforts to eradicate polio is one of and can spread the virus. the best examples of global cooperation in health This means that as few as one case of paralysis responses and provides the framework for how can indicate a polio epidemic. community-based solutions can be rolled out on such a mass-scale. There is no cure for polio; it can only be pre- vented through immunisation. One of the key learnings from polio eradication is that surveillance and mapping of the health re- It is estimated that 40,000 Australians contract- sponse are fundamental to understanding the ed paralytic polio, plus a larger number of people spread of the disease and how to reach every who unknowingly had a mild, undiagnosed case. last child. Likewise, we’ve learnt that attitudes Australia is also home to a number of younger towards vaccination and education campaigns survivors from countries where polio was more are critical linchpins to success. recently eradicated or is still endemic. The true heart of the polio eradication initiative is Polio survivors recall frightening times spent in its education component, with local vaccinators isolation — their parents were only able to see working in every part of the world in very dan- them through a window and their siblings were gerous locations. often banned altogether. The COVID-19 response will need to draw from There was no certainty about how well, or in fact the learnings of the polio response as it is truly whether, those who contracted polio would re- one of the great success stories of our world. cover. These initiatives take time and require confi- dence from the community in the vaccine, which Once out of isolation, parents were only able to any COVID-19 vaccine will need. visit their children once a week and many had to travel long distances by public transport. Even (Continued on page 18) then, visits were often curtailed because their

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The Eradication Fight Must Go On (Continued from page 17)

The pausing of polio vaccination programs in 55 The time lag from the initial infection to this sec- countries and accompanying social distancing ond phase varies but is commonly around 30 measures have reduced COVID-19 risks for com- years. The onset is usually slow and steady. It munities and frontline workers in the developing may occasionally develop suddenly and progress world. at an irregular pace. Symptoms sometimes Meanwhile, the wealth of experience, and the emerge after a period of physical or emotional resources and infrastructure of the Global Polio strain, or after a period of immobility. Eradication Initiative (GPEI) are now being uti- The late effects cause a range of debilitating lised by national governments to help address health effects. Support is therefore also crucial the challenges of COVID-19 in multiple ways, for polio survivors and will be needed for an esti- including crisis response, risk communications, mated 90 years after the final polio case. and disease surveillance. A federal grant provides Polio Australia with But this shift in priority this year means that the funding to educate health and medical profes- polio program is now facing a major budget sionals on the late effects. shortfall, and more support is needed to get This one-of-a-kind initiative bridges knowledge back on track for polio eradication while also and generation gaps, better enabling the health keeping everyone safe from COVID-19. management of those Australians who have Sting In The Tail been affected by polio. This is absolutely critical. Australia has been an incredibly generous sup- We hope this will continue until the last Australi- porter of the Global Polio Eradication Initiative an polio survivor needs it. (GPEI), committing $113 million since 2011 but The hope of a polio-free world is in our grasp. there is now a need for extra funding borne out We cannot stop at the final hurdle, and an in- of unique and unforeseeable circumstances. creased effort now will save lives. That is why we have launched a new campaign It should give us all hope in a time where fear is seeking further federal funding of $10 million to high, that if we come together we can beat this help bridge the funding gap. You can go to deadly, preventable disease. www.globalcitizen.org right now to take action For more information on Global Citizen, visit and ask Australia’s Foreign Minister Marise Payne www.globalcitizen.org to make this new commitment. Contact Polio Australia at For those for whom the vaccines came too late, www.polioaustralia.org.au for more information there is a ‘sting in the tail’ of the virus. Years and support. after contracting polio, survivors can develop a range of biomechanical and neurological symp- toms now recognised as the ‘late effects’ of po- lio.

Couch Conversations By Gary Newton Polio Australia Vice President Earlier in the year I was approached by the Rota- ry Club of Frankston North (Victoria) to be their guest speaker as part of Polio Awareness Month. In particular, they wanted me to speak to the Club about my lived experience with polio, my involvement with Polio Australia and the late ef- fects of polio. After that talk, which was done in October for World Polio Day, I was contacted by Bev Unitt to be a guest on her “Couch Conversations” video to expand on my earlier talk to Frankston North Rotary. Although based in Queensland, Bev saw my orig- inal talk as she is also a member of the Rotary Club of Frankston North. Link to the 22 minute video interview here

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[Polio Oz News Page 19 ] David Onley’s Polio Story

By Derek Miller W5 Producer Revealed: Desperation during the polio epi- demic brought troubling treatments Source: www.ctvnews.ca—27 November 2020 TORONTO—You’ve probably heard about David Onley. He is remarkable for lots of reasons. He was Canada’s first news reporter with a visible disability. He’s been a dogged advocate for ac- cessibility, and of course he was Ontario’s repre- sentative to the Queen as the 28th lieutenant- governor. You probably haven’t heard about the time a man held a knife to his throat and threatened to kill him. When Onley was three-years-old he contracted polio, a virus that left thousands of Canadian children dead or with permanent disa- es, which were extremely painful. The doctor bilities. In Onley’s case, it affected both of his stopped and asked Onley’s parents and grand- arms and his legs. parents to leave the house. You might think it was because it would be traumatic to see their He spent seven months at Toronto’s Hospital for little boy in such pain. That wasn’t the half of it. Sick Children. His parents could only visit once a week, and could only see him through a window. “He didn't want them to see him when he pulled That separation had a lasting effect, perhaps as out his knife and put it to my throat and said, poignant as the virus itself. ‘You move this leg or I'm going to slit your throat right now and let you bleed to death. Now move “That was worse than not seeing them at all be- the leg,’” recalls Onley. Onley was terrified. But cause after a while you just sort of forget about the threat was effective. “You know what? I them,” Onley said from his Toronto home. “It moved the leg and I moved the arm and I moved creates major separation anxiety.” whatever he wanted me to because I believed When Onley returned home, a new anxiety set in him,” he said. — one that came from the doctor who was in He never spoke a word of the violent threat to charge of his physiotherapy. anybody at the time. The treatment lasted sev- “When he would arrive, it was like the scene out en days a week for months. At the end of it, On- of the Exorcist,” Onley recalled. “The man with ley could ride a tricycle, walk and even run a bit. the black bag on the poster and the silhouette. I That sort of physiotherapy wouldn’t fly today, of was initially terrified.” course. It would be headline news and result in As it turns out, it wasn’t the black bag and im- the doctor getting his licence pulled. However, posing silhouette that Onley needed to worry the “ultimate tough love,” as Onley describes it, about. It was the doctor’s technique. Onley was worked. His parents saw substantial improve- chosen for a controversial therapy, called “The ment over the months of the unorthodox treat- Kenny Method.” It was named after Elizabeth ment. Kenny, who was an Australian self-taught nurse Onley is not traumatized by the memory. In fact, credited by some as one of the pioneers of mod- he speaks affectionately of his time with the doc- ern physiotherapy. tor, who he felt genuinely cared about his reha- Her method was specifically meant for polio sur- bilitation. He can even laugh about it. vivors and involved applying strips of hot, wet “I've never had difficulty following orders from cloths to damaged limbs and then ‘exercising’ that time on,” he said. Years later, as an adult, them, which meant physically stretching them Onley met the doctor again. “He could see that I the way they should normally move. The prem- had definitely recovered and I knew it meant a ise was that it would prevent deformities and great deal to him. We had some great conversa- build up muscles. It was painful. It was also tions. He’s a great man,” says Onley. effective. Two years after Onley contracted the virus, Dr Onley doesn’t recall the physician’s full name, Jonas Salk developed a polio vaccine, saving but he certainly can see him when he closes his countless children from the debilitating effects of eyes. He was a local practitioner from Onley’s the epidemic’s worst cases. The vaccine took hometown of Midland, Ont. and made the trip to decades to fully take control of the disease and Scarborough to administer the Kenny Method in Canada didn’t declare itself polio-free until 1994. the kitchen of Onley’s grandparents’ home. That’s been the same case for most of the world, On the first day, the physician began the exercis- (Continued on page 20)

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David Onley’s Polio Story (Continued from page 19) where the virus has almost completely been your family health provider. eradicated. However, that’s beginning to Onley, now 70, can’t say enough about the im- change. COVID-19 has disrupted immunization portance of vaccinations. “Had the polio vaccine programs around the globe and now new polio existed in the Tuesday before Labour Day 1953, cases have begun to show up in places where I would have got it and my life would be com- the virus was once held at bay by the vaccine. pletely different,” he said. Eighty million babies have now missed critical Although he went on to have a long and success- vaccines, prompting the World Health Organiza- ful career, Onley wants people to know that just tion to sound the alarm and ask countries to re- like with COVID-19, polio has long-term effects. instate their vaccination campaigns. For him, lifelong effects include post-polio fatigue If you’re wondering if your child can still be vac- and, of course, mobility challenges. He says cinated during the COVID-19 pandemic, contact when a vaccine for COVID-19 comes along, no one will need to threaten him with a knife to get one.

Aged Care Royal Commission Recommendations

By Gillian Thom- as President During October, Equity for people with disability receiving recommendations aged care from the Counsel By 1 July 2024, every aged care recipient with a Assisting the Aged disability or disabilities, regardless of when ac- Care Royal Com- quired, should receive through the aged care mission were up- program daily living supports and outcomes loaded to the Royal (including assistive technologies, aids and equip- Commission web- ment) equivalent to those that would be availa- site, where the ble under the National Disability Insurance complete recom- Scheme to a person with the same or substan- mendations can tially similar conditions. also be download- ed. Annual reporting to Parliament by the Disa- bility Discrimination Commissioner and the Some relevant rec- Age Discrimination Commissioner ommendations from polio survi- By 1 July 2024, the Disability Discrimination vors’ viewpoint are Commissioner and the Age Discrimination Com- below. These Assis- missioner should be required, as part of the new tive Technology for All (recommendations sup- National Disability Strategy, to report annually to port what the ATFA) national alliance (of which the Parliament on the numbers of aged care re- Polio Australia is a member) has been campaign- cipients with disabilities who are 65 years old or ing for. older and their ability to access daily living sup- ports and outcomes (including assistive technol- Assistive technology and home modifica- ogies, aids and equipment) equivalent to those tions category available under the National Disability Insurance From 1 July 2022, the Australian Government Scheme. (and, from 1 July 2023, the Australian Aged Care The Commissioners delivered an interim report Commission) should implement an assistive on 31 October 2019, a special report on technology and home modifications category COVID19 and aged care on 1 October 2020, and within the aged care program that provides are required to provide a final report by 26 Feb- goods (including aids and appliances) and ser- ruary 2021. vices that promote a level of independence in daily living tasks and reduces risks to living safe- ly at home. The assistive technology and home modifications category should continue within the new aged care program from 1 July 2024.

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Disability Royal Commission Report

By Kymberly Martin The 561-page document details the experiences Royal Commission of many people with disability, as well as the reasons they are exposed to violence, abuse, ne- — release of Final Report delayed glect and exploitation. “The interim report is an Source: Freedom2Live.com.au important milestone in the work of the Royal Commission,” Mr Sackville said. —4 November 2020 “The report explains the approach the Royal The Disability Royal Commission interim report Commission is taking. The task confronting us is has been published, without any recommenda- formidable, but we are committed to completing tions, however chairman, Ronald Sackville, has the work in a way that will help bring about requested a 17-month extension to September transformational changes in the laws, policies 2023 to release a final report. and practices affecting people with disability. He said that the pandemic has hampered the In the past 50 years, significant progress has work of the Royal Commission, particularly its been made in addressing the harsh and at times public engagements, but the interim report has cruel and inhuman treatment of people with dis- been presented within the time specified in the ability. Terms of Reference. “People with disability now have a voice through The report said people with disability experience their representative organisations and the NDIS attitudinal, environmental, institutional and com- has been established, but welcome as those munication barriers to achieving inclusion within changes are, a great deal remains to be done,” Australian society. It shows that a great deal he said. needs to be done to ensure that the human rights of people with disability are respected and Accessible Word and PDF formats, an Easy Read that Australia becomes a truly inclusive society. guide and Easy Read Summary, and an Auslan video summary are available.

Polio—Related Research Into Brain Network

By Aisha Abdulla, PhD Source: alsnewstoday.com—1 December New research into the motor networks of polio survivors shows the brain may “rewire” itself in neuro- logical diseases, leading to a reorganization that also may serve as a potential biomarker of amyo- trophic lateral sclerosis (ALS) [motor neuron disorder] and other motor neuron disorders, a study re- ports. Published in the journal Clinical Neurophysiology, the study, by researchers at Trinity College Dublin, is titled “Altered Supraspinal Motor Networks in Survivors of Poliomyelitis: A Cortico-Muscular Coher- ence Study.”

Summary provided by Michael Jackson, Polio Australia’s Clinical Educator This study noted that, in polio survivors, the electrical signature of intense muscle activation (as seen in the brain) is used by polio survivors to complete a light (10% effort) motor task (thumb-finger pinch). This signature was most strongly observed in those who experienced polio before 18 months of age. Human brains develop considerably during the first few years of life, and disruption to motor and feedback loops can cause disor- ganisation in the brain as it tries to work out how to engage a limb to move. Polio survivor’s brains in this study are do- ing widespread brain work for less demanding movement tasks than someone who has not had polio, and have been doing so since their initial polio rehabilitation.

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GPs Called To Help Track Down Polio-Loke Viruses

By Doug Hendrie Source: www1.racgp.org.au—11 November 2020 The samples are necessary to differentiate enter- Is polio over? Not yet, with polio-like en- ovirus-linked AFP from those linked to the more common Guillain-Barre syndrome. teroviruses on the rise and vaccine-derived poliovirus seeing a resurgence overseas. Research co-author and paediatric infectious dis- eases physician Dr Phillip Britton told newsGP the new enteroviruses are cropping up through po- liovirus surveillance programs. “These two strains, A71 and D68, have caused problems in North America and East Asia over the last 15 years,” he said. “That’s why report- ing cases of polio-like illness in children is really important. Sending specimens as early as possi- ble to reference labs to test for these is often overlooked. “From a GP perspective, it might come to your attention from hand, foot and mouth, fever and rash in young children. If there was a cluster in your area, sending a swab to reference labs to find out what viruses are around could be worth- while.” Dr Britton says NPEV can lead to permanent inju- ries. GPs have been called to be on the lookout for new non-polio enteroviruses (NPEV) that can “There are several from the 2013 outbreak left cause acute flaccid paralysis, or even death. with permanent spinal cord injury with long-term sequelae of paralysis, and several who had simi- Four children died in a 2013 outbreak of the A71 lar long-term consequences from the D68,” he enterovirus strain in Sydney, which can circulate said. in mild form and cause hand, foot and mouth disease. More than 100 others had severe neu- “It can be quite a devastating illness, and very rological issues. much like polio in the ’50s and ’60s.” Meanwhile, a worldwide rise in cases of circulat- In better news, the NPEV strains do not appear ing vaccine-derived poliovirus has led to re- to be as infectious as poliovirus, which led to searchers calling for a continued focus on main- mass outbreaks throughout the 20th century. taining Australia’s high rates of polio vaccination. “Polio is more explosive and more widespread,” Researchers are concerned about the A71 and Dr Britton said. the D68 strains of NPEV, in particular, both of “I don’t want to suggest this is as big a problem, which can manifest in mild forms as the hand, but we certainly need to monitor [NPEV strains], foot and mouth disease that commonly affects as they have the potential to become a big prob- young children. lem.” The D68 poses risks due to its links to a newly While the viruses have been known to science for recognised condition, acute flaccid myelitis decades, the NPEV strains now causing concern (AFM), with a recent Communicable Diseases In- are constantly evolving. telligence bulletin warning of ‘growing evidence “One thing about these enteroviruses is they’re of a causal link between AFM and outbreaks of very error-prone in how they replicate, with a non-polio enterovirus species, in particular enter- real ability to recombine parts of their genetic ovirus D68’. makeup with other viruses,” Dr Britton said. New research in the Journal of Paediatrics and “That’s one of the real concerns — they’re much Child Health calls for increased awareness and more like the flu virus, which is constantly vigilance for these NPEV due to the challenges to changing and different.” identification and the risks to public health. This mutability means that while the poliovirus The research suggests doctors should request vaccine has been remarkably successful, produc- stool samples in suspected cases of acute flaccid ing a vaccine for NPEV strains is much harder, paralysis (AFP) and inform the Paediatric Active according to Dr Britton. Enhanced Disease Surveillance Network and the Australian Paediatric Surveillance Unit. (Continued on page 23)

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GPs Called To Help (Continued from page 22)

Polio experts say that, for every known case, China has been leading the push to a vaccine for there are about 2,000 infections in the popula- the A71 strain, which has been responsible for tion, according to Nature. more than 120,000 severe cases and more than The issue stems from the older poliovirus vac- 3,300 deaths between 2008 and 2015. cines used across much of the world, which rely “China has had the biggest problem with this vi- on weakened virus forms. These can, in rare cir- rus. But no one knows how stable these vaccines cumstances, lead to a reversion to virulence. are over time. For the D68, there is no vaccine,” “It's a catch-22; the older polio vaccines are in- Dr Britton said. credibly effective in controlling wild polio, but a Polio Re-emerges In A New Guise very small proportion revert and can cause dis- ease, especially in populations where vaccination The new concerns come even as poliovirus is on rates are low,” Dr Britton said. the ropes. The dreaded disease it could cause, poliomyelitis—which caused permanent paralysis “In our region, Papua New Guinea and the Philip- in less than 1% of infections—led to one of the pines have seen significant outbreaks of vaccine- world’s most successful vaccination programs. derived poliovirus.” Two out of three wild poliovirus strains have While Australia uses inactivated polio vaccine, been eradicated in the last five years, and all of which cannot revert, people could be at risk if Africa is now polio-free. vaccination levels drop. With wild polio now found only in Afghanistan “Having high rates of this vaccine at a population and Pakistan, the world was anticipating the im- level is still incredibly important to protect us minent eradication of the dangerous virus, in from importation of poliovirus,” Dr Britton said. what would have been only the second virus— “We’ve got 95% vaccination rates amongst chil- after smallpox—to ever be wiped out. dren, the highest rate it’s ever been. We can’t But as the current coronavirus pandemic shows, lose focus on this incredibly important virus. viruses pose a constant threat. “If the community at large understands how im- While poliovirus was brought down to its lowest- portant these diseases are at a global level and ever levels in 2019, a recent resurgence of vac- in Australia, we can see that vaccination rate cine-derived poliovirus challenges the long continue to rise. hoped-for victory. There have been more than “I’m very aware GPs are at the front line of vac- 460 cases of this form of polio worldwide this cinations and maintaining confidence in the com- year—more than four times the number in 2019. munity.”

Nerve Pain Explained

When pain continues longer than the time expected for an injury to heal (usually longer than 3 months), it is known as chronic pain. Nerve pain, often called neuropathic pain, is a type of chronic pain that affects about 1 in 20 Australians. Find out more about managing your nerve pain and strategies to help you live with your condition. Nerve pain is caused by damage or injury to the nerves that send messages to the brain to signal pain. Nerve injury can result from medical conditions such as shingles, diabetes, stroke and HIV. Nerve pain is often described as shooting, stabbing or burn- ing sensations. Skin can become numb to light touch or warm objects. Sometimes, things that are not usually painful can cause pain (eg, contact with bedsheets). Nerve pain can affect your sleep, mood and daily activities. It is important that nerve pain is diagnosed accurately by your GP. After that, you can decide together on how best to manage your condition. Check the NPS Medicinewise website for clear, concise infor- mation: www.nps.org.au/consumers/nerve-pain-explained

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Could Covid - 19 Lead To Measles And Polio Epidemics

Source: www.healtheuropa.eu surgence of the disease, resulting in as many as —9 November 2020 200,000 new cases annually, within 10 years. UNICEF and the World Health Organization are Dr Tedros Adhanom Ghebreyesus, WHO Director calling for emergency action to avoid potential -General, said: “COVID-19 has had a devastating measles and polio epidemics as COVID-19 dis- effect on health services and in particular im- rupts normal immunisation programmes. munisation services, worldwide, but unlike with COVID, we have the tools and knowledge to stop The COVID-19 pandemic is disrupting immunisa- diseases such as polio and measles. What we tions across the globe, and both UNICEF and the need are the resources and commitments to put WHO are now calling for emergency action in or- these tools and knowledge into action. If we do der to protect the most vulnerable children from that, children’s lives will be saved.” these deadly and preventable childhood diseas- es. A next-generation, novel oral polio vaccine and the forthcoming Measles Outbreak Strategic Re- The organisations issued the urgent call to ac- sponse Plan are expected to be deployed over tion, estimating that $655m (€551.66m) — the coming months to help tackle these growing $400m for polio and $255m for measles — will threats in a more effective and sustainable man- be needed to address dangerous immunity gaps ner, and ultimately save lives. in non-Gavi (The Vaccine Alliance) eligible coun- tries and target age groups. “We cannot allow the fight against one deadly disease to cause us to lose ground in the fight Protecting The Most Vulnerable against other diseases,” said Henrietta Fore, In recent years, there has been a global resur- UNICEF Executive Director. “Addressing the gence of measles with ongoing outbreaks in all global COVID-19 pandemic is critical. However, parts of the world, with measles at its highest other deadly diseases also threaten the lives of number for two decades in 2019. Protection millions of children in some of the poorest areas against measles and polio through vaccine pro- of the world. That is why today we are urgently grammes has been majorly disrupted during this calling for global action from country leaders, year’s unprecedented health pandemic. donors, and partners. We need additional finan- cial resources to safely resume vaccination cam- At the same time, poliovirus transmission is ex- paigns and prioritise immunisation systems that pected to increase in Pakistan, Afghanistan, and are critical to protect children and avert other many under-immunised areas of Africa, and fail- epidemics besides COVID-19.” ure to halt the spread would lead to a global re-

The Campaign To Wipe Out Polio

By Jason Beaubien The Campaign To Wipe Out Polio Was Go- ing Really Well ... Until It Wasn't Source: www.npr.org—30 October 2020 The multibillion-dollar global effort to eradicate polio hasn't just stalled. It's moving backward. When the Global Polio Eradication Initiative be- gan in 1988, roughly 350,000 kids a year were paralyzed by the virus. By 2016 that number had been driven down to 42 cases of any type of polio anywhere in the world. But now cases are on the rise and expected to climb even further in the coming months. So far this year officials have tallied more than 200 cases of wild polio and nearly 600 cases of the vaccine-derived form of the disease. Most Notes of the vaccine-derived strains of polio are in Afghanistan and Pakistan, but now these rogue 1. Vaccine-derived polio is a strain of the virus strains of polio are also turning up across much that originated as part the oral polio vaccine of sub-Saharan Africa, Yemen, Malaysia and but has managed to circulate, reproduce and the Philippines. regain strength in places with poor sanitation.

(Continued on page 25)

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The Campaign To Wipe Out Polio (Continued from page 24)

Notes (Cont.d) And there's no sign that the Taliban are going to 2. Through Oct 20. lift the ban. Source: WHO Cases are rising so dramatically in Afghanistan and Pakistan that WHO has authorized the rein- Credit: Jess Eng/NPR troduction of a trivalent oral polio vaccine that Vaccine-derived polio is caused by remnants of was pulled from circulation—with a lot of fan- earlier versions of the live virus used in the oral fare—in 2016. The trivalent oral polio vaccine is polio vaccine. The vaccine can be shed through also known as the "Sabin vaccine," for its devel- faeces. In places with poor sanitation, the vac- oper, Albert Sabin. cine can be spread through wastewater. Over The Sabin vaccine contains live, weakened virus time, the virus from the oral vaccine can repli- particles from the three strains of polio, Type 1, cate, regain strength and become just as virulent Type 2 and Type 3. It's easy to administer—just as the original virus against which it's supposed two drops in a child's mouth. It's the original to protect. workhorse of the global polio eradication cam- And worst of all most kids born after 2016 have paign and allowed health workers to wipe out the no immunity to the most prominent vac- disease in many parts of the world in the second cinederived polio strain because that strain was half of the 20th century. thought to be on the verge of elimination and is But by 2016 the Sabin vaccine appeared to have no longer included in the primary oral vaccine outlived its usefulness. Wild forms of Type 2 and they would have received. Type 3 polio were no longer found in nature. What's more, millions of children have not re- What's more, the Type 2 portion of the vaccine is ceived vaccines because of conflict and lack of the source of most of the new "vaccinederived" access in Taliban-controlled areas of Afghanistan strains of the virus now causing more paralysis and Pakistan plus pandemic lockdowns. than the original wild forms of polio. So in April 2016 the Sabin vaccine was set to be pulled out "2020 has been a terrible year and will continue of circulation by every country in the world at the to be a terrible year," says Michel Zaffran, head same time. The elaborate process was called of the Global Polio Eradication Initiative at the "The Switch." World Health Organization in Geneva. According to this new strategy, oral vaccines The pandemic is part of the problem. In March, without Type 2 would still be administered in WHO ordered a pause to all polio eradication some countries—carrying out mass vaccination campaigns to make sure vaccinators going door campaigns in which every kid has to get a shot is to door weren't unwittingly contributing to the far more complicated than just putting two drops spread of COVID-19. That order was lifted over of the Sabin vaccine in a child's mouth. the summer, but "as a result, 30 to 40 countries have not conducted mass immunization cam- Overall, however, low-income countries would be paigns," Zaffran says. "During that period, up to encouraged to start immunizing children with the 80 million children have been left unprotected injectable form of the vaccine. The injectable is against polio." known as the "Salk vaccine" for its developer, Jonas Salk. This is what's used in the United The fear is that with so many children now sus- States and other wealthy nations. It protects ceptible to polio, outbreaks could erupt, particu- against all three types of polio. It does not con- larly in areas with poor sanitation where the vi- tain live virus and thus does not pose a threat of rus can thrive. creating vaccine-derived strains of the disease. And then there's the role the Taliban have played But immediately after The Switch there was a in stymieing vaccination efforts. "For the last 28 global shortage of the injectable version. months, there was a ban on polio activity in the southern provinces controlled by Taliban," says Regardless of the type of vaccine being used, the Mohammedi Mohammed, head of immunization primary impediment to making polio the second for UNICEF in Afghanistan. human disease (after smallpox) to be eradicated is that polio transmission has never been "Twenty-eight months! It's enormous," he says stopped in the Afghan-Pakistan region. Every of the amount of time that vaccinators have been other country in the world has managed to get barred by the Taliban from doing door-to-door down to zero cases, even if some of those coun- polio vaccination drives. "If we continue like tries continue to deal with occasional vaccine- this, soon we will have three years of children derived flare-ups. that were born but not vaccinated. So we are building up the susceptibles for a mega-outbreak."

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[Polio Oz News Page 26 ]

The Campaign To Wipe Out Polio (Continued from page 25)

Polio Is Making A Comeback Africa Declares Wild Polio Is Wiped Out— Yet It Persists In Vaccine-Derived Cases In Afghanistan the government, along with UNICEF and other aid agencies, is attempting to Polio isn't a priority for the Taliban or many local find new ways to gain access to Taliban areas. residents, he says. "The community starts to They're launching expanded health services at say, but why do you always offer the two [polio] clinics in Helmand, Kandahar and Uruzgan prov- drops? What about the rest? I mean, we are not inces to vaccinate kids against not just polio but dying of polio. We are dying of measles. We are numerous other diseases. dying of diarrhoea. We are dying of pneumonia. So please help us out." "People in these three provinces are really the most underserved people of the entire country," In one of the last sanctuaries for wild polio in the says UNICEF's Mohammed in Kabul. "There's no world, Mohammed says the hope is that children water projects. There's no schools. The nutri- will get vaccinated for polio—and measles and tion is a disaster." other preventable diseases—through these new basic health services campaigns.

Photo: A health worker administers a polio vaccine to a child in Afghanistan's Kandahar province. Tali- ban opposition to vaccine campaigns have left millions of children unprotected against the virus. Javed Tanveer/AFP via Getty Images

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[Polio Oz News Page 27 ]

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