COVID, Children & Vaccination, Hemlibra Survey, HFNZ National Family Camp, Women and Bleeding Disorders, Youth Leadership Training, Upcoming events, and all the Latest News from HFNZ... |
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The latest from the Haemophilia Foundation of New Zealand - January 2022 |
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As of today all of Aotearoa New Zealand remains at the Red traffic light setting. While cases have not increased as quickly as we may have thought, the Omicron variant is known to spread very easily, and numbers are growing steadily.
Red is not a lockdown, but there are restrictions to slow the spread of COVID-19. You will always be able to access basic needs services, such as food and healthcare. You can travel anywhere in New Zealand for any reason, and see friends and whānau. However, you must wear a face mask on flights, public transport, and taxis, in retail shops and public venues, and in health and education facilities.
HFNZ will continue to take the advice of the Ministry of Health when making decisions about events and activities.
With My Vaccine Pass, most parts of life continue as usual. You can visit cafes and bars, attend gatherings and events, and go to the hairdresser and gym. However, there are capacity limits and distancing requirements at some venues. Without My Vaccine Pass, there are restrictions.
You can find out more about life at Red here: https://covid19.govt.nz/traffic-lights/life-at-red/
Children and Vaccination
Children and young people aged five and over can get a COVID-19 vaccine now. They will receive the Pfizer vaccine, with tamariki aged five to 11 getting a child (paediatric) dose. It is also given using a smaller needle. The lower dose was chosen based on a trial that showed the lower dose was safe and had few side effects in this age group.
To be fully protected, children needs two doses of the Pfizer vaccine. It is recommend that the first and second dose are at least eight weeks apart. The interval can be shortened to a minimum of 21 days if needed – for example, if the child is starting significant immunosuppression treatment.
If your child is 11, it is up to the parent or caregiver to decide when a child gets their first vaccination. If you choose to wait until after they turn 12, they will get the adult vaccine for both doses. If they get their first dose when they are 11, they will get the children's version for both doses — even if they get their second dose after they turn 12. The size of the child is unrelated to the immune response. The maturity of the immune system is what counts. Children under 12 produce an appropriately strong immune response with the child dose.
A responsible adult needs to accompany the child to their appointment. This can be a parent, an adult family member, trusted family friend, legal power of attorney, or whanaungatanga carer. Consent for vaccination needs to be given by a legal guardian of the child. If the adult who accompanies the child to the appointment is not the child’s legal guardian the vaccinator will need to verbally confirm by phone with a legal guardian that they consent to the child being vaccinated, or the responsible adult can bring a signed copy of the COVID-19 vaccination consent form completed by a guardian.
To ensure the safety of members, HFNZ asks you all to be fully vaccinated when attending HFNZ events, such as the Family Camp in April and Women’s Weekend in June, 2022. To book your vaccine go to https://bookmyvaccine.covid19.health.nz/
Once you are fully vaccinated you can download My Vaccine Pass. This is an official record of your COVID-19 vaccination status for use within Aotearoa New Zealand. It will allow you to access events and venues operating under the traffic light system.
You may not be able to access the venues and/or events that you'd like to over the summer, and beyond, if you do not have My Vaccine Pass. This will include venues for upcoming HFNZ events, like National Family Camp and Women's Weekend.
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PHARMAC is currently assessing whether to offer emicizumab (Hemlibra) to all people with severe haemophilia A. Hemlibra is currently available only to those with inhibitors.
As a person and/or parent or partner of someone with haemophilia, HFNZ invites you to answer three quick questions so we can understand how members feel about changing to Hemlibra.
Your answers will be anonymous and will be used to inform any HFNZ submissions to PHARMAC.
Thank you in advance.
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HFNZ National Family Camp |
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Planning continues for National Family Camp on 19 - 22 April, 2022 at the Christian Youth Camp in Ngāruawāhia.
You will need a My Vaccine Pass to access the venue, so please make sure your whānau are fully vaccinated, and get your pass as soon as you can.
National Family Camp is for families where a child aged 0 - 10 has a diagnosed bleeding disorder, or is the sibling of of a child with a bleeding disorder.
Young families, where a child is newly diagnosed with a bleeding disorder, often need support and information to manage the impact of the disorder on their family. The National Family Camp enables parents to access education in a supportive environment, while their children are enjoying their own recreational programmes.
Opportunities are included for families to mix together so that they can establish friendships and develop support networks with other families who understand and live with bleeding disorders.
Registrations are open now. Click the button below to get registered today!
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Women and Bleeding Disorders |
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In 2017 HFNZ undertook a survey to find out how women with bleeding disorders were affected during menstruation. The data showed that 87% of women reported excessive bleeding during their period, 82% used more than one sanitary product at a time, and 46% faced financial hardship due to the cost of purchasing sanitary products.
This year HFNZ are undertaking an advocacy programme to support women and girls who are burdened by the high cost of sanitary products. We are approaching companies that produce period products to find ways for members to access reduced-cost products, and underwear.
If you have concerns about your bleeding, your Outreach Worker is a great place to start. If you're interested in self-assessment, check out letstalkperiod.ca, which has a number of resources and a specific self-assessment tool. |
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The International AFFIRM Program is an international advocacy and leadership development program. It is designed to mentor men and women aged 26-38 with a bleeding disorder as they further develop and expand their leadership and advocacy skills with the aim to bring better care, programs and treatment to their respective communities.
AFFIRM attendees will participate in four program meetings over a two year time frame. Program meetings will be held in different countries around the world.
Each program meeting agenda will have a specific focus designed to enhance the attendees’ leadership and advocacy skills, raise their level of education and provide practice workshop sessions that offer hands on experiences.
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Youth leadership training
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HFNZ values the input of the National Youth Committee, and is committed to fostering the development of our young leaders, who will go on to become the leaders of the Foundation.
We are planning a Youth leadership event for 25-27 March, in Wellington. Despite the potential rise of Omicron we remain committed to planning for this important Youth leadership weekend. We will keep a watching brief on the level of risk and safety.
Invitations will go out later this week. If you're interested, or have any questions, please let us know by dropping us a line at info@haemophilia.org.nz |
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Registration is now open for the WFH 2022 World Congress. This important event will take place from 8 to 11 May, 2022. Here's what the organisers have to say about the event:
The World Federation of Hemophilia (WFH) and the Canadian Hemophilia Society (CHS) are excited to welcome the global bleeding disorders community to the WFH 2022 World Congress — the first major hybrid event of the international bleeding disorders community. The in-person component of the hybrid Congress will take place in Montreal, Canada, with select sessions being broadcast through our virtual platform to an expected audience of more than 8,500 virtual attendees.
The Congress program will cover the latest developments in our field, current patient healthcare issues, and the challenges ahead for the management and treatment of hemophilia, von Willebrand disease, rare factor deficiencies and inherited platelet disorders. In addition to this rich scientific content, there will also be ample opportunities for participants to make new friends and reconnect with old ones.
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Keep your member details up to date |
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In order to get the most out of your membership, it's important to keep your details up to date. The key details are email address and date of birth.
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.
If we have no DOB for you we can't filter you in to age-based mailing lists, like Adult Weekend, Youth Camp, and Women's Weekend. Again, if you're not sure that we have your DOB, please let us know. |
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Here's what HFNZ have lined up for members in the coming months:
Youth Leadership Training
Wellington. 25 - 27 March, 2022
National Family Camp
19 - 22 April, 2022. Christian Youth Camp, Ngāruawāhia.
Women's Weekend
Postponed until 10-12 June, 2022. Dunedin.
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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