Adult weekend 2020, Dr Mark Smith, PharmacOutreach, Upcoming events, and all the Latest News from HFNZ
The latest from the Haemophilia Foundation of New Zealand - September 2020
 Last chance to register for Adult Weekend!

If you're interested in attending Adult Weekend in Christchurch, this is your last chance!

We are very pleased that we can now offer this event to our members with more certainty due to the lowering of Covid alert levels.

Registrations will close on Friday 2 October to allow us time to finalise flights and accomodation for this fantastic event. Please remember that no bookings will be made until the attendance fee is paid, or you have made arrangements with Leanne for payment. Email leanne@haemophilia.org.nz to find out more about payment.

The aim of Adult Weekend is to learn ways of improving your mental and physical well-being, and increase your knowledge about your bleeding disorder, while sharing, relaxing, and enjoying yourself. The programme will also cover complications that come with living with a bleeding disorder.

Because we all have differing needs, the programme is being tailored to cover a range of issues, with concurrent sessions where appropriate. There will be workshops presented by experts from within the Foundation and beyond, as well as opportunities to talk and share experiences.

A final letter of instruction will be sent out to all those registered closer to the event.

Click the button below TODAY to register via LilRegie.

 Remembering Dr Mark Smith

It is with deep sadness that we advise of the passing of Dr. Mark Smith, haematologist and Clinical Director of Haematology at Canterbury Health Laboratories in Christchurch. Mark had been involved in researching and managing haemophilia since 1995, initially in London, before returning to work in Christchurch in 2002.

Mark died suddenly late last week and we understand that this will be a deep shock for HFNZ members. Many of you have come to know and respect Mark, who had served our community tirelessly and with his special brand of humour, for a lengthy period. Mark was always available to speak at HFNZ events, advocated strongly for our members at a clinical level, and had significant input into the treatment of individual members.

We want to reassure HFNZ members that the CDHB will ensure the continuity of their care and will advise in due course about this.

Our deepest sympathy and thoughts are with Mark’s wife Cathy, their children Zoe and Torin, extended family, colleagues, and friends at this difficult time.

 Pharmac emicizumab consultation

Pharmac is seeking feedback on their proposal to fund emicizumab (Hemlibra) from 1 December 2020, through a provisional agreement with Roche Products (New Zealand) Limited.

To read the full proposal, click here:
http://www.haemophilia.org.nz/assets/external-docs/2020-09-18-Consultation-Letter-emicizumab.pdf

Here's a summary of what Pharmac propose:

  • From 1 December 2020, Hemlibra would be funded for people with severe haemophilia A and inhibitors, subject to certain clinical criteria.
  • Clinical advice indicates that treatment with Hemlibra significantly reduces the frequency of bleeding episodes for people with severe haemophilia A who have developed inhibitors to standard treatment with factor VIII. Hemlibra is an injection that people could self-administer, and would reduce their need to go to hospital and improve their quality of life.
  • Pharmac estimates that approximately 10 - 15 patients per year would be eligible for treatment with Hemlibra under the proposed criteria.
  • Currently, access to haemophilia treatments is managed by the Haemophilia Treaters Group in conjunction with the National Haemophilia Management Group (NHMG). It is intended that this new treatment would be managed in the same way; however, it would include the requirement for a Special Authority approval for access.

HFNZ will be submitting a response on behalf of members. If you would like to contribute to our submission, please click the link above to read the full document, then write to us at info@haemophilia.org.nz.

 Midland Outreach
A reminder that, as the National Council and CEO have decided not to seek a new Midland OR Worker until 2021, members in the Midland region continue to be supported by either Northern OR Worker Amber Maihi or Central OR Worker Lynne Campbell.

As mentioned above, we're very happy to see the lowering of Covid alert levels across NZ. This allows our Outreach team to once again get out and about and connect face-to-face with our members.

If you live in the Waikato DHB catchment your OR contact is Amber Maihi at amber@haemophilia.org.nz or on 027 512 1114.

If you live in the Bay of Plenty or Lakes DHB catchments, then your OR contact is Lynne Campbell at lynne@haemophilia.org.nz or on 027 273 3443.

Please refer to the image below to determine which DHB you're in.
 Member Details
In order to increase the reach of HFNZ communications, and improve member outcomes, Outreach have begun updating member details in the database. Over the coming weeks members will be contacted to add missing details. The most pressing details are email addresses and dates of birth.

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 your Outreach Worker 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 and Youth Camp. 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 your OR Worker know.

Southern: Ross Paterson - ross@haemophilia.org.nz, 021 656 804
Central: Lynne Campbell - lynne@haemophilia.org.nz, 027 273 3443
Northern: Amber Maihi - amber@haemophilia.org.nz, 027 512 1114
 Southern Walking Group

Unfortunately, due to the weather bomb that is still affecting parts of the country, the last walk to Godley Heads was put off. You won't miss out though, because we've decided to make the Godley Heads Circuit the walk for October instead.

This walk starts from the Taylors Mistake Carpark (Car park is at the end of the road in Taylor’s Mistake close to the Taylor’s Mistake beach) and takes us out to Godley Head on the Godley Head Circuit. This is a longer walk (3 hrs approx), than our previous two but is not as steep.

As the weather is starting to warm up, we encourage you to join us, if an invigorating walk appeals.

We now have just two more walks scheduled for the year. We are fortunate that we have a multitude of walks available in the Port Hills that allow us to take in vistas over Lyttleton Harbour, the open sea, Canterbury Plains and Christchurch depending on the walk that we choose. We can usually take in at least two of these stunning outlooks on any given walk!

 

Details of our trips come out monthly, and further information was included in the last issue of Bloodline. A useful resource for these walks is Mark Pickering’s The Port Hills. For about $10 you will find detailed information about these walks. (No I don’t have a financial interest in Mark’s business!)

Remember a moderate level of fitness and a positive attitude is all that is needed to partake. We are fortunate to still have the support of Kathy Fawcett, CNS bleeding Disorders and Lee Townsend, Physiotherapist, who join us regularly on our walks.

For more information about our walks contact Ross at ross@haemophilia.org.nz.

Ross and Kyle

Upcoming events
Here's what HFNZ have lined up for members in the coming months:

Adult Weekend
6 - 8 November, 2020 in Christchurch.

Southern Fishing Trip
29 November, 2020 in Nelson.

Youth Camp
29 April - 2 May, 2021 in Kaiapoi at Blue Skies.

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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