Youth camp, CEO update, World Haemophilia Day, Emicizumab registry, Upcoming events, and all the Latest News from HFNZ... |
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The latest from the Haemophilia Foundation of New Zealand - April 2021 |
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HFNZ Youth Camp is coming together! |
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Plans for the HFNZ Seven Summits Youth Camp are moving ahead. We are booked in to the Blue Skies venue in Kaiapoi, just out of Christchurch, on 16 -20 July. Friday 16 July will be leaders training day, then attendees will arrive on Saturday 17 July.
Invitations to register have been sent to the parents of all elegible children, and a leaders list is being developed. To register your child just click the button below.
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The Seven Summits theme reflects the accomplishments of mountaineer Chris Bombardier. Chris didn't let his haemophilia get in the way of scaling the highest peaks on all seven contintents. We'll be watching the Bombardier Blood Movie, and enjoying a variety of activities related to adventure planning and preparedness.
Growing up is exciting, challenging, and often very confusing. When a bleeding disorder is added to the mix the challenges of young adulthood only increase. Youth Camp, for 10-18 year-olds, uses a combination of education, fun, and peer and mentor support, to help young people move to the next stage of managing their condition. The focus is on being well-informed and better able to make decisions about their bleeding disorder treatment, education, work, life-style and relationships.
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CEO Update: NZ health system changes |
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This month the government announced a monumental change to the New Zealand health system, and a great opportunity for inclusive and cohesive care for all. The announcement clearly acknowledged the increasing complexity of care, the fact there is insufficient data on specific populations, and that current services were no longer serving the needs of all New Zealanders. This is particularly true for people with bleeding disorders, where a national database would significantly improve outcomes.
The government proposes that all DHBs are disestablished and replaced with a national health organisation – Health New Zealand (HNZ). That means that the Ministry of Health (MoH) will no longer fund services. HNZ will monitor services and plan for capital investment and improved IT services. There will also be a new Māori Health Authority, and a new Public Health Agency. The Director General of Health, Ashley Bloomfield, remains, and the Director of Public Health and Mental Health and Wellbeing will come under the MoH.
The Minister noted that there will be a focus on primary and secondary services, and that these changes are intended to improve the current structure where access to treatment depends on where you live. He said that the current system is under stress, and that demand is growing. The additional $5.6M put into health last year was not enough to make up for years of underfunding.
It's clear the we need a system that is fairer and smarter. The proposed changes focus on Te Tiriti o Waitangi, local communities, access to emergency services and specialists, improved digital services, and the training of health-care workers. The key objectives include improving the health system, strengthening the MoH, HNZ replacing the DHBs and operating under four regions, and developing a new Public Health Agency.
It is essential that HFNZ continue to amplify the voices of people living with bleeding disorders and their whānau to ensure that our community is included in these reforms.
If you would like more information on the proposed reforms, contact info@haemophilia.org.nz
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World Haemophilia Day 2021 |
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World Haemophilia Day was Saturday 17 April. HFNZ want to extend a big thank you to all the landmarks around New Zealand that lit up red to support this very special day. |
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To celebrate World Haemophilia Day the Central region held an event for HFNZ members at the Murrayfield Café in Levin.
It was a glorious warm autumn day. Eighteen people attended, which inculded four children. The children explored the idyllic surrounding, and fed the ducks and alpaca.
The meals were scrumptious.
It was good to get know other members and whānau in a sociable setting. Friendship and Fellowship were the key to an enjoyable get together.
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Emicizumab is a relatively new treatment for Haemophilia which has transformed the lives of many people around the world. In New Zealand at this stage only people with factor VIII inhibitors are eligible for treatment, but hopefully wider access will become available in time.
As this is a new drug, there are still things to learn about it. The clinical trials showed really positive results, and I am sure it will become part of our standard treatment for Haemophilia A, but there are still some questions.
To help answer these questions, the Haemophilia Treaters from all the centres in New Zealand are keen to collect data on how emicizumab is used. We are at the planning stage of this project, and once we have a plan in place, the project will need to be approved by the National Ethics Committee. We can only collect information from you with your consent.
Our plan is to collect information from you about your emicizumab treatment. This will be stored on a secure database and will only be accessible by the doctors or nurses at your own treatment centre. We will analyse the data anonymously.
We would like to know if you are comfortable with the idea of us collecting this data, and whether there's any other information that you believe would be helpful to collect.
If you have any questions about this project or any suggestions that could help, please contact info@haemophilia.org.nz.
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Are you thinking of studying? Perhaps you'd like to move into a different area of employment? Or maybe you have some vocational training you'd like to finish?
The Allan Coster Educational Endowment Trust (ACEET) offers grants to help people with bleeding disorders get access to vocational training and education.
The ACEET grants are not just for university study. The ACEET trustees will consider applications for primary, secondary, undergraduate, postgraduate, trades, or vocational training. That means, if you have a bleeding disorder, a dream, and a course that will help you to get where you want to be, then an ACEET grant could be what you need.
Previous recipients have used their grant to complete courses from reading assistance, to business management, to graphic design. If it is going to improve your prospects, then it's worth getting an application in.
Grant applications are considered three times a year. To check the next application deadline, or apply for a grant, just contact your Outreach Worker.
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In order to increase the reach of HFNZ communications, and improve member outcomes, we continue to update member details in the database. The most pressing details are email addresses and dates of birth. Over the coming weeks Outreach Workers will be contacting members to update their details.
Having a current email address for you and your whānau is important as we try to manage costs. Posting invitations and information to members is an expensive business, and where possible we would prefer to make contact electronically. If you have an email address, but you're not sure that we have it, please let us know.
The other essential detail is date of birth. We need this so that we can be sure you're on the list for age-restricted events, like Adult Weekend, Youth Camp, and Women's Weekend. If we have no DOB for you the database won't filter you in to age-based mailing lists. Again, if you're not sure that we have your DOB, please let us know. |
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Are you living with Haemophilia A?
Auckland Clinical Studies (ACS) and P3 Research are looking for volunteers to help study a potential new treatment for congenital Haemophilia A.
To take part in this study you will need to:
- Be male, aged 18 to 75 years
- Have a diagnosis of congenital Haemophilia A
- Be in good health or have other medical conditions that are well controlled.
You cannot:
- Have any other known coagulation or haematologic disorders
- Be taking medication to suppress the immune system
The study involves:
- 2 clinic visits, and a follow up phone call
- All study participants will receive the investigational drug (no placebo)
- You will be reimbursed for attending study visits and for reasonable travel expenses
For more information and to see if you may be eligible:
Auckland: Phone 0800 STUDIES (0800 788 3437) extension 105 or 157 to speak with one of our team, or apply online by visiting www.clinicalstudies.co.nz and follow the links to our ‘Register interest/Register now’ page
Wellington: Phone 0800 737 883 to speak with one of our team, or apply online by visiting www.p3research.co.nz and follow the links to the 'current studies' page.
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Quick update from Kyle, we had a change of plans and now our next hike will be May 2nd and we will be attacking the Mighty Rapaki!
It's simple stuff - we head up as a team and return after taking in the lovely sights of the harbour and bask in the glory that comes with being physically higher than all the folk in the city below us.
As always this is all about having fun, getting fresh air and seeing friends. Please encourage friends and family to join, we are always keen to add more to our hiking group!
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Here's what HFNZ have lined up for members in the coming months:
Youth Camp
17 - 20 July. 2021.
Blue Skies, Kaiapoi.
Women's Weekend
2021. Date and venue to be advised.
National Family Camp
2022. Date and venue to be advised.
If you have any questions about any of these events, please don't hesitate to drop us a line at info@haemophilia.org.nz. |
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