Haemophilia News

Participants wanted for research on experience of NZ genetic services

2009-03-25

Have you had a consultation with genetic services in New Zealand? If so, you might like to participate in a research project about users’ perspectives on genetic information management issues. The project has been approved by University of Auckland Human Participants Ethics Committee and the researchers wish to interview a few more patients to complete their study of user experience and perspectives on NZ genetic services. The study involvement will be about a half an hour interview. If you are interested, please contact Helen Gu at University of Auckland ygu029@cs.auckland.ac.nz phone 09 373 7599 x 89232.

Possible Link: vCJD and UK plasma products

2009-02-18

HFNZ has been notified that tests carried out on a haemophilia patient in the UK who died last year have shown that he was infected with the abnormal prion protein that causes vCJD. The patient did not die of vCJD, and never had any symptoms of this disease when he was alive. The patient was in his 70s when he died of an unrelated cause. The tests were carried out as part of a research study jointly co-ordinated by the UK Haemophilia Centre Doctors Organisation and the National CJD Surveillance Unit.

This patient had been treated in the 1990s with several batches of UK sourced clotting factors, including one batch of factor VIII that was manufactured using plasma from a donor who  later died from vCJD.

A final view as to how this haemophilia patient became infected with the vCJD abnormal prion protein has yet to be reached. Investigations are therefore continuing to establish this. The person was a meat-eater, underwent surgical procedures and had received red cell transfusions – all of which are known risk factors for vCJD transmission. However, at this time, investigators believe that the most likely cause of his vCJD infection was the contaminated UK-sourced clotting factor concentrate.

Internationally, this is the first time that the vCJD prion protein has been found in a patient with haemophilia or, indeed, any patient treated with plasma products. This patient did not die of vCJD, and the only reason we know he was infected with the vCJD abnormal prion protein is because of the research tests carried out after he had died.

Risk of vCJD New Zealand
The likelihood of similar cases occurring in New Zealand is low.
 
There have been 164 cases of vCJD reported in the UK, mostly linked to eating infected UK beef products. The infection, bovine spongiform encephalopathy (BSE), has never been detected in New Zealand cattle. 

Compared to the UK, there have been no cases of vCJD ever reported in New Zealand. No fractionated blood products for the treatment of haemophilia derived from plasma collected from the United Kingdom have ever been used in New Zealand.  New Zealand fractionated blood products are derived exclusively from New Zealand donors.

Precautions have been in place to protect the NZ blood supply from possible infection with classic CJD and vCJD for a number of years. 

• In February 2000 New Zealand was the second country in the world to introduce the UK donor deferral whereby individuals who have spent a cumulative period of six months or more in the UK between 1980 and 1996 are excluded from donating blood.
• In September 2002 the deferral was extended to include individuals who had received a transfusion in the UK after 1980.
• In April 2006 the travel and transfusion deferrals were extend to include the Republic of Ireland and France.

In addition, fractionation methods have been continuously enhanced and the New Zealand Blood Service advises that the manufacturing processes used by CSL Bioplasma in Melbourne to fractionate NZ plasma products include steps to remove the vCJD infectious agent.

However, if you have a bleeding disorder and you received clotting factors made from UK-sourced plasma between 1980 and 2001, you are considered to be at an increased risk of vCJD compared to the general population. If you are in this group, and would like to discuss this, please contact your haemophilia treatment centre (i.e., your treating haemophilia doctor or nurse), or your outreach worker.

Other patients (those who have not been treated with UK plasma factor concentrates) do not have an increased risk of vCJD, and do not need to take any action. Please contact your haemophilia treatment centre if you are unsure about your past treatment and your vCJD at risk status.

HFNZ has written to all their members with this information. For further information visit the website of  the World Federation of Hemophilia or the UK Haemophilia Society.

Blood Supply Not Affected by Recall

2008-08-21

New Zealand Blood Service confident that a manufacturer initiated recall of test kits used for screening of blood donations has not affected the safety of blood supplied for transfusion in New Zealand.

Chiron, a Novartis company, informed the New Zealand Blood Service (NZBS) on Friday 15th August that they were recalling batches of test kits used in the screening of blood donations in New Zealand. The recall was initiated when Chiron became aware that the test kits had been stored in sub-optimal conditions in its warehouse in Singapore. Chiron is currently performing additional tests to identify whether the altered storage has affected the quality of the test kits. As a precautionary measure, pending the results of this additional testing, Chiron has decided to recall the test kits.

The recall affects test kits used by NZBS to test donated blood since late November 2007. Alternative supplies of test kits have been received and NZBS has used these for testing of all blood donations from 15th August.

The test kits normally have an active shelf-life of 30 days following thawing. Based on tests performed on the affected batches, Chiron has confirmed that the recalled test kits may safely be used for up to 12 days after thawing. NZBS has completed an investigation into the age of the test kits used for testing of all blood donations since November 2007. 148,000 donations were tested with the affected test kits.  More than 99% of these were tested within 12 days of the test kits being thawed. Only 769 donations were tested with test kits beyond the 12 day thaw period identified by the manufacturer. NZBS routinely store a sample of each donation for a period of 5 years. The samples from the 769 donations have been retrieved and re-tested. The results of repeat testing confirmed the results on the original test.

All blood donations in New Zealand are routinely tested for the presence of Human Immunodeficiency Virus (HIV), Hepatitis C virus (HCV) and Hepatitis B using highly sensitive serological tests.  These tests were not affected by the recall and have continued to perform normally during the period. The Nucleic Acid Tests involved in the recall are used to detect early infections that might be missed by the standard serology tests. During the last 8 years no donations have been identified in New Zealand that are positive in the NAT test but negative in the standard HIV and HCV serology tests.

Based on the above, NZBS is confident that the testing of blood supplied for transfusion during this period has met all standard safety requirements. There is no evidence that the recall of the test kits has any implications for patients who have been transfused during the affected period, those who have used plasma-derived blood products or who will need transfusion in the future.  


If you are a member of HFNZ and have questions on the above please contact your Outreach worker.

Embryonic tests make haemophilia a problem of the past

2008-06-30

Dunedin twins have made New Zealand medical history. Doctors in Christchurch have developed a technique enabling a couple to have twins free of an inherited disease.


See full story and video of news article on TV3

World Haemophilia Day 2008

2008-04-22

Every year, countries around the world join the WFh in celebrating World Haemophilia Day on April 17th.  The common goal for this day is to increase awareness of haemophilia and reaffirm our commitment to improving care.  The global theme for 2008 is Count Me In and focuses on registering and identifying patients.

New Zealand enjoys a fairly high standard of care so during the week surrounding World Haemophilia Day on April 17th many New Zealanders affected by haemophilia were involved in a variety of activities to raise awareness of bleeding disorders and simply enjoy the company of one another.

In Auckland,  Stace Hardley put on a brave face as he took a stroll around the Sky Tower - showing what can be achieved with adequate care and treatment.  His feats were featured in the Western Leader. Read story here

Northern and Midland also held a joint family day at the Corn Maze in Drury.  Midland also held an café evening on 11 April to welcome their new haematologist.

In Christchurch, a family party took place to celebrate both World Haemophilia Day and HFNZ 50th birthday. There were fantastic clowns, balloons and cake for all!  Bayer helped sponsor the party and provided great Live, Work, Play gear.  One family who attended, the Leslies, were also featured this week in the Ashburton Guardian. Read story here.

World Haemophilia Day was launched by the World Federation of Haemophilia in 1989 and is celebrated annually in countries around the world.  The event is observed on April 17 - the birth day of WFH founder Frank Schabel.

HFNZ hopes everyone got out to celebrate this great day.

Bad blood victims brace for fresh battle against lawyers

2008-04-07

from The Press - 4 April 2008

Victims infected with hepatitis C in the bad blood scandal of the 1990s are facing a fresh battle against their lawyers.

The lawyers are claiming thousands of dollars in legal costs from compensation awarded by the state.

The dispute is preventing 25 victims with haemophilia from receiving lump sums from the Government and delaying some members from starting treatment for the hepatitis C they contracted through contaminated blood products. Brian OMahony, the head of the Irish Haemophilia Society, who visited Christchurch this week, has called the latest twist in the saga "grotesque", "bizarre" and "unprecedented". He is calling for a truce so victims can get their long-awaited compensation.

In December 2006, the Government announced a $31 million package for people infected with hepatitis from blood products before screening was belatedly introduced in New Zealand in 1992.

About 180 people with haemophilia and nearly 400 others were infected by then, despite screening becoming commercially available overseas in 1990.

So far, 486 victims have applied for one-off payments and the Government has paid out $25.5m.

Most of the affected haemophiliacs -- about 155 -- have received packages from $43,200 to $69,600, enabling many to start a chemotherapy-type drug course for hepatitis C. The liver-attacking virus can lead to cirrhosis (scarring) and cancer.

But the 25 victims, including two from Christchurch, have held off accepting compensation while they are locked in a dispute with their lawyers, who are seeking costs of $12,700 to $18,500 per person, ranging from 19 per cent to 38% of the packages.

The victims were among 55 haemophiliacs, and 215 clients in total, who signed up for a class action to sue the Government for failing to introduce national screening earlier.

The action never went ahead because a political settlement was reached after 14 years of negotiation between the Haemophilia Foundation of New Zealand and successive governments.

But the lawyers, Johnston Lawrence, of Wellington and Penney Patel Law, of Auckland, still want the cut that was agreed when the civil suit was being planned. Thirty haemophiliac clients have settled, many because they needed the money to start up to 48 weeks of hepatitis C treatment with crippling side effects which could render them unable to work. The rest are holding out in the hope agreement can be reached. For Mike Mapperson, one of those waiting to settle, it is a matter of principle.

Of the $39,000, plus $2000 legal fees, he is entitled to, the lawyers want a third. "I signed up with the lawyers on the basis that there was going to be a legally achieved settlement. But I do not think the lawyers actually achieved the settlement. The Haemophilia Foundation did."

"The contract never had any clauses in it to say that if there is a political settlement, rather than a legal settlement, you would not have to pay any fees or as many fees.

"The benefit -- or the disadvantage -- of hindsight now shows that the lawyers get paid no matter how we get the money and no matter how much money we get."

So far, despite 14 months of negotiation between the foundation and lawyers, the dispute remains unresolved. More lawyers for both sides, and more costs, will be involved in trying to settle the row through mediation in Wellington next month.

Roger Chapman, a senior partner of Johnston Lawrence who is handling the bad blood matter, is overseas until the end of the month. His firm said only Chapman could respond to the issue.

Norman Elliot, a principal of Penney Patel Law did not want to comment.

OMahony, a past president of the World Federation of Haemophilia, said the fact that some people were having to put their treatment on hold, because the dispute had delayed settlement, was "grotesque, unbelievable, bizarre and it is unprecedented".

In Ireland, where a political settlement reached in 1991 for haemophiliacs who contracted HIV resulted in the winding up of a class action, lawyers were paid 3% of each victims award.

"Here they are looking for 19% to 38%," OMahony said. "Its unconscionable."

Claimants should not have to pay large fees to the lawyers for the work carried out by the Haemophilia Foundation, he said.

OMahony is urging lawyers to reach an agreement with victims to bring some closure.

Mapperson said that, unlike other cases, the dispute was not delaying his access to treatment.

Heparin contamination highlights need for more access to recombinant therapeutics in NZ

2008-04-04

There have been reports in the USA of adverse reactions to certain heparin products.  Heparin is used in the manufacturing of plasma-derived therapeutics for the treatment of bleeding disorders in New Zealand.  While the manufacturer, CSL Bioplasma, has taken steps to ensure their supply of heparin is not from the infected batches and that no adverse reactions have been reported in New Zealand or Australia, the Haemophilia Foundation of New Zealand (HFNZ) believes this potential contamination of blood-derived products highlights the need for the increased availability of recombinant therapeutics for haemophilia.

“Haemophilia therapeutics manufactured using recombinant DNA technology have the advantage of removing the risk of contracting blood-borne viruses. In New Zealand and around the world, many people with haemophilia in the early 1980s became infected with HIV; the nineties brought hepatitis C infection via the blood supply ,” said Deon York, HFNZ President. “Blood donations used to make plasma-derived products have been meticulously screened for disease since the mid-1980s.  These deaths in the USA remind us that the risk of infection through other means is still possible and we must encourage the use of the safest treatment possible for haemophilia patients.”

A number of patients in New Zealand who were victims of contaminated blood products still receive plasma-derived concentrate to treat their haemophilia instead of recombinant products.

Investigations by the U.S. Food and Drug Administration (FDA) into the potential cause of the hundreds of allergic reactions and 19 deaths linked to Baxter International’s heparin product have revealed the source of the contaminant, a heparin-like substance called oversulfated chondroitin sulfate. It is unclear if the contaminant is directly responsible for the allergic reactions. The allergic reactions have occurred predominantly in patients undergoing kidney dialysis, heart surgery and apheresis (a procedure that removes whole blood to extract a portion of it, such as platelets). Baxter, supplier of 50% of the U.S. heparin market, announced a voluntary recall of nine lots of heparin on January 17, 2008.

Further information:

Heparin is an important and essential additive in the finished form of the plasma-derived therapeutics by CSL Bioplasma for the New Zealand market  - MONO-FIX®-VF (human coagulation factor IX) and PROTHROMBINEX®-VF and PROTHROMBINEX®-HT (prothrombin complex concentrate) used to treat haemophilia B. Although detectable levels of heparin are not present in the finished form, it is also used in the early stages of the manufacture of BIOSTATE® (human coagulation factor VIII) for the treatment of haemophilia A and some case of von Willebrand’s disorder.

Heparin is a generic anticoagulant drug derived from the intestines of pigs. A portion of the active ingredient used to make Baxter’s heparin product comes from suppliers in China, where uneven regulation, plus the employment of some crude and unsanitary heparin processing workshops have triggered greater global scrutiny.

Oversulfated chondroitin sulfate can be chemically altered to “resemble” heparin. Chondroitin sulfate, an inexpensive and readily available substance derived from animal cartilage becomes more like heparin with the addition of extra sulfate. When combined with actual heparin, the substance can be difficult to detect.
CSL Bioplasma has assured HFNZ that it has contacted its two heparin suppliers and confirmed that the heparin supplied to them is from a different source to that which resulted in the adverse reactions reported to the FDA. CSL Bioplasma has confirmed that their heparin suppliers have conducted additional tests recommended by the FDA to detect the contaminant to those batches supplied to CSL Bioplasma.

Global Feast 2007

2007-11-23

Global Feast is the international event to raise funds for improved treatment for people struggling with bleeding disorders.

On 23 November, National Office and the Southern Region held a fundraising dinner and art auction to support this great cause a Boaters Restaurant in Christchurch Town Hall.

Around 70 members joined HFNZ staff and council members for a memorable evening that raised over $3000.00 for Global Feast.

HFNZ are very grateful to the artists who have donated their time, materials and talent for the auction. Here is a sample of some of the pieces we have received.

• Angela Laby, Auckland
  
• Emma Beard, Wellington
  
• Jo Burne, Christchurch
• Gabrielle Desley van Bree, Kaiapoi
• Sandy Gottermeyer, Ohoka
• Jan Stupples, Christchurch
• Rachel van der Monde, Melbourne
• Tania Verrent, Manawatu
• and especially Linelle Stacey - the mastermid behind the idea of the auction and major contributor

Cafe evenings and other events were also held in across New Zealand.

Argent hit hole in one for HFNZ

2007-10-23

HFNZ were most grateful to be the chosen recipient charity of Argent Financial Services Ltd Charity Golf Tournament for 2007.  The event, held at the Windsor Golf Course on the outskirts of Christchurch on Friday 19 October 2007, raised a generous $10,000.00 for HFNZ.

HFNZ would like to thank Argent Financial for thinking of HFNZ. The funds will be put to great use during the Newly Diagnosed Family Camp in Kaiapoi due to take place in January 2008.

It was a great day and a fantastic effort by the team at Argent, all the sponsors and players.

Our sincerest thanks.

Jack Finn- Mission Incomplete but Well Worth the Try

2007-04-23

Jack Finn’s attempt to be the first person to solo circumnavigate the Auckland Islands by sea kayak has ended prematurely due to injury. Finn and his support vessel, the Tiama, will return to Bluff Harbour at 9am Wednesday 25 April.  Despite the excellent progress he was able to make last week, Finn will be unable to complete the 220 km journey around the remote sub-Antarctic islands due to his medical condition. 
Though saddened to not be able to complete the expedition, Finn is still pleased with what he has achieved and feels inspired by the wild beauty of the area.
Finn had kayaked most of the way down the eastern coast, approximately a third of the journey, when it became obvious that he had developed a haemorrhage in one of his back muscles. Finn suffers from mild haemophilia, and although he is an experienced kayaker and in top physical condition it is hard to predict which bumps or strains will cause a bleed in a person with haemophilia. Though his back is very swollen and painful, Mary Brasser, a haemophilia nurse serving as his medic onboard the Tiama, assures he is being well taken care of and will recover in time.
“It was painful and draining for him, but he was really delighted to have time in this truly remarkable environment. Jack recognizes that it was not wise to continue with any further kayaking. As all those with haemophilia know, when this sort of bleed or injury occurs you just have to stop and rest. No matter where you are, or what your hopes and dreams are.....you have to stop,” comments Jack’s mother Mary Hancock, who is also present on the support vessel.

The Tiama and crew, including Jack, continued the trip around Auckland Island and up the west coast in ideal conditions – bright sunshine with only moderate swell. Jack did manage to kayak around Disappoint Island, off the west coast on the way, but knew the expedition was lost. The Tiama continued on to Enderby Island, where with their DOC guide they were able to explore the incredible landscape and see sealions and hoiho penguins and a multitude of sea birds up close. This is a once in a lifetime opportunity as the islands are protected by the Aucklands Islands National Nature Reserve and the public do not usually have a right to access them.

“Those of us travelling with him as part of his team really respect how Jack has dealt with this huge disappointment. Yes, he has been very knocked by it all, but is also proud that he did kayak most of the east coast. Adventures often unfold in unexpected ways, and this has certainly been the case for Jack in these Auckland Islands. This remarkable wilderness has had a huge impact on us all” concludes his mother.

Even with the significantly delays caused by bad weather on his departure, Jack and the Tiama return to Bluff a day earlier than originally planned. Friends and members of the Haemophilia Foundation of  New Zealand Inc. will be on hand to greet him and congratulate him for his efforts and inspiring them to pursue their own dreams.

MoH Announces Hep C Package

2006-12-05

The Minister of Health announces $30 million package to provide one-off payments as a part of a way forward for people who were infected with hepatitis C through the New Zealand blood supply. To view the Government Press Release click here

Acknowledgement for Victims of Bad Blood

2006-12-05

The Minister of Health has announced the delivery of a treatment and welfare package for people infected with hepatitis C from blood and blood products. The Haemophilia Foundation of New Zealand (HFNZ) welcomes the package for their affected members and all New Zealanders who contracted Hepatitis C from products containing infected blood. The campaign for full and fair recompense for those affected began in 1992 when details of the catastrophe began to emerge.

Ninety percent of people with haemophilia regularly treated in the 1980’s and early 1990’s with human plasma based therapies contracted hepatitis C from the blood products used to treat their bleeding condition. While the New Zealand blood supply was rigorously tested to screen out hepatitis C from 1992/93 people with haemophilia throughout the 1990’s began to develop hepatitis C or learn of their earlier infection. The quest for recognition, treatment, apology and fair recompense has been going on for fourteen years. “The most important part of this package is the commitment to improved access to care” said HFNZ President Dave McCone.

A service Development Group is to be formed and tasked with undertaking a national stocktake of services and to define the prevalence of hepatitis C in the New Zealand population. This urgent work will dramatically enhance access to care where presently some people are waiting up to twelve months to see a gastroenterologist before commencing the treatment journey that may last another twelve months. Left untreated, hepatitis C can lead to cancer of the liver. The ongoing effects of hepatitis C often leave a person unable to work and carry on a normal life. The present agreement was finalised between the Ministry of Health, Crown Law and HFNZ, following comprehensive submissions and negotiations throughout 2005 and 2006. The package is focused on improved access to treatment but also includes a formal statement of regret from the Prime Minister on behalf of government. An ex-gratia grant from the Crown is also included in the package. The amount of the grant is based on ACC lump sum entitlements in 1992, the time this matter occurred. Dave McCone said, “On behalf of people with haemophilia I congratulate the Minister of Health, Hon Pete Hodgson on the commitment he has made today toward seeing these issues resolved. To finally have a government of New Zealand prepared to consider the evidence surrounding the cause of this catastrophe and to make treatment of the consequent conditions available is a great relief for our members. This has been a long time coming and a difficult road for the families affected. Our thoughts today are with those who lost a family member as a result of hepatitis C without seeing this issue resolved. Formal recognition from the government is an important first step and the expression of regret from the Prime Minister is an integral part of this treatment and welfare package. HFNZ now calls on the National Party to also apologise for the part they played in the infection of innocent people with preventable hepatitis C”.

HFNZ would like to acknowledge the commitment of the Prime Minister, Hon Annette King and Hon Pete Hodgson and the small team at the Ministry of Health who have developed this treatment and welfare package. HFNZ would also like to acknowledge the ongoing support of Rt Hon Winston Peters, Hon Tariana Turia and Ms Jeanette Fitzsimons. “While there is still a significant amount of work to be done before we see this package delivered in full, as agreed, we are looking forward to working closely with the Minister’s office to see his commitment become a reality in the daily lives of people living with this awful illness. This work is urgent and needs to be completed with haste”, said McCone. McCone added, “No amount of compensation can fully make up for the personal injury many of our members have suffered, but we believe that the treatment and welfare package is broad enough to address at least the most urgent needs of people living each day with two chronic, life long, debilitating illnesses.”