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September 2015
PATRON Dr Richard Pembrey AM, MB BS, MD, FRACP, FRCPA
NEWSLETTER
HAEMOPHILIA FOUNDATION AUSTRALIAN CAPITAL TERRITORY
Welcome Spring!, and goodbye another Canberra winter, the coldest I can recall since I moved here from Melbourne over 10 years ago. Just around the corner now is the 17th Australian & New Zealand Conference at the Gold Coast from 1-3 October.
Also coming up is Haemophilia Awareness Week, running from 11-17 October 2015. This is an important time for the haemophilia community, providing an opportunity for individuals and families, as well as haemophilia foundations such as HFACT, to take
part in a campaign to raise funds and awareness about haemophilia, von Willebrand disorder and other bleeding disorders. A significant event during Haemophilia Awareness Week is to hold a local Red Cake Day, on your own or with a group. More information about Red Cake Day can be found on the web at
www.haemophilia.org.au/redcakeday. HFACT is considering options on how to contribute to Red Cake Day.
Planning for the HFACT Coastal Camp in 2016 is continuing. See the camp notice on page 2 for preliminary information.
The HFACT Committee has recently developed HFACT's inaugural Code of Conduct. The Code was developed as a means of assisting HFACT in meeting its mission of improving the well-being of the haemophilia community through mutual support, networking, advocacy, and striving for optimal health care. The introductory statement of support for the code from the HFACT committee appears in this newsletter. The full document is too large to print in this newsletter, but it is publicly available on our web site. I encourage you to read it.
On a final note, it was great to see a good turnout for HFACT's annual mid-winter dinner. Great food, great company and a great night all round. I would like to express a thank you to Dr Nalini Pati and James Slade from the Canberra Hospital for their speeches and advice, and a special thank you to HFACT's patron, Dr Richard Pembrey AM, for his sage words and continuing support of HFACT.
Claude Damiani
President
President’s Report
Page President’s Report .............................. 1
Women’s Wisdom .............................. 2
HFACT Coastal Camp 2016.................. 2
Message from Clare ........................... 3
Membership Subscriptions Now Due .. 3
Health Funds That Cover MedicAlert Membership ................................ 3
HFA Delegate’s Report ....................... 4
Haemophilia and Travel Insurance ..... 5
Code of Conduct Statement of Support .................. 7
Dates for Your Diary ........................... 7
Results of the Fundraising BBQ .......... 8
Haemophilia Contact Numbers ........... 8
Our Mission ........................................ 8
Acknowledgement of ACT Health ....... 8
Contents
Guest speaker Dr Nalini Pati.
L to R: Len Minty, James Slade, Elliott,
Rebecca Minty and Dr Richard Pembrey
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Date: Friday 8th April—Sunday 10th April 2016. Note, this is the first weekend of the ACT and NSW school holidays.
The venue is Camp Longbeach, just north of Batemans Bay A quiet bush setting by the beach not far from Canberra. Accommodation options include cabins and camping. A range of facilities for gentle and sporting activities. We need your expressions of interest before we can finalise the venue and make
bookings. A mixed program of fun leisure activities and informative sessions. Catch up with old friends and make new ones. Supervised fun stuff for children during the sessions. Plenty of time for the adults to relax and have fun too. Subsidised by HFACT - a small contribution to the cost will be required.
Email us at: [email protected] with your name, the number of adults and children and topics of interest.
We’ll be in touch. RSVP by 8th October 2015
The Women's Wisdom group has met twice since we last reported for the newsletter. Two very different gatherings. The first, in May, was an afternoon with Alison Ware, a therapeutic harpist. We were intro-duced to harp music, the role of music in healthcare and had the opportunity to handle and try out a number of different harps. We even discovered some potential talent amongst the group. Alison
spoke about activities for children and how she uses music to provide comfort, deep rest, relaxation and support. Her music was lovely and we definitely wish to invite her par-ticipation in future HFACT activities (maybe the camp next April).
On 30th August a smaller group gathered for an unstructured get together. Discussion ranged across a number of topics as we enjoyed a
cuppa in the late winter sunshine.
Many thanks to Clare Reeves (May) and Janet Sloan (August) for hosting these sessions. Our next gathering will be in November and will proba-bly focus on the outcome of the conference in October and the HFACT coastal camp next April.
Jenny Lees
Women’s Wisdom
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Message from Clare
In the June newsletter we provided details of medical bands and bracelets. Since then we have received the fol-lowing information from MedicAlert.
A number of health funds are now providing full or part of the cost of a MedicAlert membership and medical ID, which makes joining and renewing more economical. To date the following health funds are providing cover for MedicAlert membership:
If you belong to one of these funds, then ask MedicAlert for a tax invoice to claim your entitlements through your health fund.
HAEMOPHILIA FOUNDATION AUSTRALIAN CAPITAL TERRITORY
Springtime Greetings
I am on leave from 10th August to 24th September. During my absence social worker Ben Chapman has been em-ployed by HFACT to cover my position as counsellor. Please make Ben wel-come. He is a very experienced social worker and is keen to make himself available to the bleeding disorder com-munity whilst I am away. He can be contacted on the counsellor’s mobile 0409 830 472.
I look forward to seeing many of you at the 17th Australian & New Zealand Conference ‘Facing the Future Togeth-er’ in October.
Clare
HFACT Counsellor
Health Funds That Cover MedicAlert Membership
Since we received that message from Clare, she is now on leave and has
been in contact. Here she, and husband Warren, are making new friends
while visiting the famous Murano glass factory in Venice.
Membership Subscriptions for 2015/16 Now Due
A reminder to all current members and potential members that mem-bership subscriptions for 2015/16 are now due. A membership appli-cation / renewal form accompanies this newsletter.
Annual membership remains at $5 for single membership and $10 for families.
Please note that even if you pay your subscription electronically, we would like you to return the com-
pleted forms, either via post or email, as we often discover that contact details in our database are out of date. We are endeavouring to bring the database up to date and your assistance in this regard would be appreciated.
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HFA Delegate’s Report
Hi everyone. I have not long re-turned from attending the national Haemophilia Foundation council meeting held early August in Mel-bourne. I've been asked to men-tion a few items that may be of interest to you:
17th Australia and New
Zealand Haemophilia
Conference We would like to encourage you to attend the upcoming Haemophilia Conference to be held at the Gold Coast. The national conferences are really tremendous events aimed at the local haemophilia and bleeding disorders community. This year, the program will deal with many of the issues affecting the bleeding disorders community and will be an exciting, interactive and stimulating conference.
In particular I want to highlight that a roundup of current issues for people with bleeding disorders and HIV is the focus for a session on HIV in the upcoming confer-ence. Expert speakers are being invited to speak on, amongst other topics:
New HIV treatments.
Living with co-morbidities.
New hepatitis C treatments and their success rates in HIV/HCV co-infection.
Ageing, resilience and other psychosocial issues.
There will also be time for ques-tions and answers with all the speakers. For registrations and further information on the confer-ence please go to:
www.haemophilia.org.au/eventsandawards/2015-gold-coast-conference
World Hepatitis Day World Hepatitis Day was celebrat-ed on 28 July 2015. This year marked the start of a national hep-atitis C health promotion campaign for the bleeding disorders commu-nity.
The theme was: It’s time for ac-tion! Know if you were exposed to hep C; get tested; have a liver check; ask about treatment (#timeforaction) .
The key messages were developed by the HFA World Hepatitis Day Working Group from recommen-dations by the HFA Hepatitis C Think Tank and were reviewed by the Australian Haemophilia Centre Directors' Organisation (AHCDO).
For further information on World Hepatitis Day and watch "the time for action" video and download the infographic please go to:
www.haemophilia.org.au/bleedingdisorders/world-hepatitis-day-2015
HFA Education Resources
in development There are two new resources to be developed in the area of women with bleeding disorders:
Carrying the gene (haemophilia)
Living with a bleeding disor-der (including living with symptoms).
Drafting of "Carrying the gene" booklet is well underway. It will contain personal stories of affect-ed women.
A few planned updates for existing resources:
Von Willebrand disorder booklet - to be revised and reprinted in the next year. A 2-page VWD fact sheet will also be prepared at the same time.
Haemophilia folder: for par-ents of newly diagnosed children - very popular with parents and haemophilia treatment centres, the fold-er is being revised and re-printed as a priority.
Medicine X Medicine X is a new initiative that explains medical information to teenage and young adult patients. It is creating a state-of-the-art digi-tal app to explain haemophilia to teenage and young adult patients in Australia. The app uses a graph-ic-style storyline of a young man with haemophilia visiting a Medi-cal Centre of Excellence (Medicine X) to learn more about haemophil-ia, how it affects him and the is-sues he needs to consider. The target group is 15-18 year olds with haemophilia. The program is likely to be completed within the next few months.
For further information on publica-tions please go to HFA's website: www.haemophilia.org.au/publications
Cheers,
Maria Wensing HFACT Delegate to HFA
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Haemophilia and Travel Insurance
HAEMOPHILIA FOUNDATION AUSTRALIAN CAPITAL TERRITORY
People with bleeding disorders face a range of challenges during their lives. Thankfully economic, medical and social progress has meant that people in Australia with a bleeding disorder today have access to much better care and treatment that those before. Improvements in quality in life for many have been significant. How-ever, challenges remain, including in the area of travel insurance.
For my sins, I previously worked in a role which enabled me to better understand the way insurance companies work, and the law which governs the way insurance companies can operate in Austral-ia. I feel some of this knowledge is worth sharing.
Its All About Risk Insurance is all about risk. High risk means high insurance premiums, and conversely low risk low premi-ums. Insurers consider individuals with certain pre-existing medical and/or mental health conditions, including bleeding order sufferers, as high risk. That is, high risk of a claim against a travel insurance policy being made, and additional-ly, that that claim would be costly. As a result, some insurers refuse to cover some individuals with cer-tain pre-existing conditions. More commonly, travel insurers will offer cover but with exclusions for a range of pre-existing injuries or medical conditions, which may include the wide range of bleeding disorders. If so, this essentially means that these insurance poli-cies would, depending on the terms and condition of the policy, cover things such as lost luggage, loss or theft of goods, and cancel-lations, but not cover medical costs associated with pre-existing
medical conditions, such as a bleeding episode for a bleeding disorder sufferer. Reading the fine print of an insurance policy (the Product Disclosure Statement), in particular in relation to which pre-existing conditions a policy will or will not cover, is important in this regard.
Buying Insurance Travel insurance can be purchased directly through an insurer, wheth-er by phone or through the inter-net, via a travel agent, or even through a credit card – many cred-it cards offer travel insurance as a complimentary card feature, usual-ly triggered once a certain amount of money has been committed or spent on travel expenses using the credit card in advance of the travel taking place. An insurance broker can also assist in procuring insur-ance. It is worth individuals with a pre-existing condition, including bleeding disorders, noting that if you apply directly to an insurer, and are refused cover, then this could count against you when ap-plying to another insurer, as it’s common for insurers to ask if you have been refused insurance by another insurer. Providing a mis-leading response could invalidate the policy in the event a claim is made.
Isn’t It Discriminatory? Some people may consider the approach of insurers towards peo-ple with pre-existing medical con-ditions as a form of discrimination. It may well be in the traditional sense, however, the law recognis-es that insurance is all about risk, and insurers need to charge premi-ums which reflect differing levels of risk. The relevant legislation
allows insurers to discriminate on the basis of age or other risk fac-tors, enabling them to charge more or less, or alternatively offer, or not offer insurance cover. How-ever, insurers are only able to dis-criminate, according to the law, if the discrimination is:
based upon actuarial or sta-tistical data on which it is reasonable for the discrimi-nator to rely; and
reasonable having regard to the matter of the data and other relevant factors; or
in a case where no such ac-tuarial or statistical data is available, and cannot rea-sonably be obtained, rea-sonable having regard to any other relevant factors.
So Who Offers Cover? Unfortunately, there are few insur-ers that offer cover. All this said, there are some insurers which have and continue to offer travel insurance for people with bleeding disorders, including BUPA (which covered my sister-in-law’s child who has haemophilia), Allianz and OneCover. These insurers com-monly require a comprehensive application form to be submitted, with medical details and history provided. Accordingly, the individ-ual medical circumstances of each individual are assessed, and in the event insurance cover is offered, an additional premium covering the risk associated with a bleeding disorder is added to the "regular" insurance premium.
When applying for insurance for pre-existing conditions, allow plen-ty of time before you travel for the
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Haemophilia and Travel Insurance (cont.)
insurer to assess your application, as they may require additional in-formation from your doctor.
Additional Premiums Given that insurance is about risk, one would expect that mild suffer-ers with few bleeds would be charged a lower premium than severe sufferers who bleed more often. Nevertheless, the insurance premium would be significantly higher, in the order of two to three times, and in some cases more, than a similar policy for a person without a bleeding disorder (that is, for a person of same age, travel-ling to the same place for the same length of time), irrespective if one is mild, moderate or severe. When I last travelled with my children, each of their travel insurance pre-miums was, from memory, more than twice that of mine.
Insurers May Change It is important to note that an in-surer that covers one individual with a bleeding disorder may not cover another. It may not always be clear why. Furthermore, an insurer may cover you one time, but refuse to do so another. This is because insurers are always ad-justing their internal policies based on a whole range of factors, in-cluding in response to large claims made against travel policies.
I’ve heard of anecdotal stories of claims into the tens of thousands of dollars being made by bleeding disorder sufferers following an in-ternational trip. In my case, one insurer which covered my two sons for one international trip sub-sequently refused to cover the
sons for another trip less than one year later.
Domestic Travel
Insurance Difficulty in getting travel insur-ance for international travel doesn’t extend to domestic travel. For travel within Australia, travel insurers are restricted from offer-ing cover for medical expenses, as this impinges on the domestic health insurance industry – only health insurers are allowed to offer insurance for medical costs incurred in Australia.
Further, the need to cover medical costs domestically is diminished given our universal health system which enables all Australians ac-cess to medical care at a public hospital. Given the limitations on covering medical expenses, do-mestic travel insurers are not very much concerned with one’s health status, including in respect of pre-existing conditions. Nevertheless, it is still worth considering getting domestic travel insurance for lost luggage, cancellations, car rental excess coverage, etc.
Can You Afford to Travel
Without Insurance? The lesson for us all is that procur-ing travel insurance for people with a bleeding disorder is not easy, at times frustrating, and in some cases (very) costly. Howev-er, the consequences of traveling internationally without travel in-surance could be financially cata-strophic. For example, a 2 week hospitalisation in the USA could easily surpass $100,000 in medical costs…Yes, more than $100,000.
The cost may not be so large in other countries for a similar length of hospital stay, but consider the costs if you were required to be medically evacuated back to Aus-tralia in the event of a significant bleed in a developing country.
Don’t rely on reciprocal health agreements to cover your medical costs. These agreements, with a range of countries including New Zealand, Italy, UK, Finland, Ireland and Malta , only cover an Australi-an resident travelling in one of these countries for essential medi-cal treatment. I cannot advise what constitutes essential medical treatment. It may or may not cov-er a bleed. I would suggest you get advice before travelling in the event you were to rely on these reciprocal agreements for your medical cover. For more details see www.humanservices.gov.au/customer/services/medicare/reciprocal-health-care-agreements
Unfortunately, travel insurance is just one of the many challenges the bleeding disorders community faces. However, there are posi-tives. There are some insurers that continue to offer travel insur-ance for people with bleeding dis-orders. It just requires shopping around to find them. Consider that the silver lining.
Claude Damiani
Editors note: If you are having trouble obtaining travel insurance, it may be worthwhile to talk to HFA. Although they do not publish the names of in-surer’s who offer insurance, they do get feedback from members around Australia about which insurers are currently offering travel insurance and under what circumstances.
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Statement of Support from President and the Committee
To assist in meeting our mission of improving the well-being of the haemophilia community through mutual sup-port, networking, advocacy and striving for optimal health care, the HFACT Committee decided that we would de-velop and operate under our own Code of Conduct.
A Code of Conduct is important tool for the Committee; it can positively shape the culture of HFACT; it sets out the standards of behaviour expected of the committee members and employee(s); it should help solve ethical dilem-mas we face and sets standards aimed at preserving the integrity and reputation of HFACT.
Our image of HFACT is directly affected by our actions. The way to maintain the respect and confidence that HFACT deserves is to know what is expected and to accept responsibility for our own behaviour. All committee members and employee(s) are bound by the code.
We have five main tenets of our Code of Conduct;
We act honestly and with integrity
We value and maintain our professionalism
We act professionally at all times and strive hard to maintain a positive image of HFACT
We respect privacy and do not misuse information
We strive to be good citizens and achieve community respect
The Committee has agreed that the Vice-President will be the Code of Conduct Manager. The Vice-President is re-sponsible for overseeing the development, promotion and maintenance of the Code of Conduct and, with the Pres-ident, adjudicates any breaches and report to the Committee on any breaches including any action taken.
If you believe that a member of the Committee and/or its employees have breached our Code, then please contact Tim Crowden or Jenny Lees in the first instance.
Regards,
Claudio Damiani (President), Tim Crowden (Vice-President), Jenny Lees (Treasurer), Rebecca Minty (Secretary), Ma-ria Wensing (Delegate), Wanda Haponik, Julia Minty, Len Minty, Marylou Minty, Janet Sloan and Fred Wensing (Committee Members) Haemophilia Foundation ACT.
The full Code of Conduct, including the corresponding roles and responsibilities of committee members, comes to ten pages, too large to incorporate into this newsletter. The documents are publicly available on the HFACT web site at www.hfact.org.au/Committee.htm. If you want to read them but cannot access the web site or would prefer to be sent a print-ed copy, please contact a member of the committee or email the newsletter editor at [email protected] .
HFACT Code of Conduct
Dates For Your Diary
Thursday 1 - Saturday 3 October 17TH Australian and New Zealand Conference
8 October 2015 Please send in expressions of interest in attending the 2016 coastal camp
11-17 October 2015 Haemophilia Awareness Week
Tuesday 13 October HFACT Annual General Meeting and Conference Wrap Up
November Women’s Wisdom - details to be confirmed.
10-12 April 2016 HFACT Coastal Camp
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HAEMOPHILIA FOUNDATION AUSTRALIAN CAPITAL TERRITORY
HAEMOPHILIA FOUNDATION AUSTRALIAN CAPITAL
TERRITORY
PO Box 331 MAWSON ACT 2607
Haemophilia Contact Numbers
Canberra Hospital Switchboard: 6244 2222 Web site: www.canberrahospital.act.gov.au
Haemophilia Treatment Centre: 0481 013 323 (Mon to Fri 9am - 5pm) Via email: [email protected]
Physiotherapy: 6244 2154
Paediatric Day Stay Centre 6174 7372
Haemophilia Foundation ACT President: 0412 839 135 [email protected] Counsellor: 0409 830 472 [email protected] Secretary: [email protected] Web site: www.hfact.org.au
Haemophilia Foundation Australia Office: (03) 9885 7800 or 1800 807 173 Web site: www.haemophilia.org.au
This newsletter is printed on 100% recycled paper, carbon neutral if possible. Contact us if you would prefer to save paper and postage by receiving the
electronic (full colour!) version via email.
Our Mission
“To improve the wellbeing of the haemophilia community
through mutual support, networking, advocacy and striving for
optimal health care.”
Acknowledgement
Haemophilia Foundation ACT would like to acknowledge that our news-letter has been produced with the
support of ACT Health.
Results of the Fundraising BBQ at Bunnings
The fundraising BBQ held at Bunnings Warehouse in Tuggeranong on 27th June was a mixed success. Great from a financial point of view and certainly worthwhile. The net amount raised was almost $1,200 which is a very useful amount that can be put toward HFACT’s support work for our members and families, such as the conference or coastal camp.
The day started out absolutely freezing. While that was great for attracting cold, hungry shoppers who stopped by for a hot sausage, it was hard for the volun-teers and even harder to defrost some of the sausages that arrived frozen.
A small down side of the day was the lack of volunteers from our general member-ship. Other than members of the com-mittee and their families, only two peo-ple volunteered, so a special thank you to them. It’s a shame really, because as well as helping HFACT help its communi-ty, these events are in many ways a so-cial occasion. A chance to catch up, share
friendship, discuss issues and learn what’s going on. You gain more than you put in, so I urge members to be involved when the opportunity next arises. All help, even for an hour, is always welcome.
Ron Lees
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Bunnings BBQ volunteers, L to R: Claude Damiani, Maria Wensing and Xavier
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