Autumn 2011 HQ Magazine

NEWS - SUPPORT - INFORMATION - INFLUENCING

Information & Support Line: 0800 018 6068 www.haemophilia.org.uk

Benefits’ Review Buddy Awards

THE MAGAZINE OF THE HAEMOPHILIA SOCIETY - AUTUMN 2011

10 14

Conference New NHS4 7

DATES NOTICES CONTINUED

NOTICES

7th October 2011Jeans for Genes Day.

29th October 2011Service of Thanksgiving andRemembrance 2.30PM at

Charterhouse.

5th - 6th November 2011Conference and AGM.

January/FebruaryBuddy Awards Ceremony (date to be confirmed)

* Society RecordsThe Penrose Inquiry has not only being putting questions to civil servants, doctors and other experts but they have also asked the Haemophilia Society for details about our own activities. Unfortunately, our records from over 20 years ago are not as complete as we would like. Have you kept any old copies of our Annual Report, Annual Review, The Bulletin or HaemoFacts from the 1980’s? If so then please get in touch with Dan Farthing on 0131 557 5953 or [email protected] as the Society wants to be able to answer all enquiries from the Inquiry as fully and truthfully as possible.

* HQ is now going LIVE on www.haemophilia.org.uk in the Membership Section, starting with the September 2011 Issue. We would appreciate any feedback on both the hard copy and digital copy.

*Caxton Foundation ready for registrations. Please view at www.caxtonfoundation/org.uk/register.php

Events and Notices Chief Executive’s Message

32

Hello

Welcome to the September issue of HQ. We’re really pleased to report on a number of very positive initiatives that have taken place over the past few months.

At the time of going to press with the last issue we were about to celebrate World Haemophilia Day with two exciting events. On World Haemophilia Day itself we launched the new International Inhibitor’s Website at the London Eye. If you want to register for the forum please go to www.inhibitorsupport.org. A few days later nearly 200 people attended a reception at the Houses of Parliament to launch our new Buddy Awards. These awards recognise the role that families and friends often have in supporting someone with a bleeding disorder. It was a great day and you can read all about it on Pages 10 and 11. Talking of awards, the Society would like to recognise the contribution of individuals and in particular young people under 25 at the forthcoming Annual Conference and AGM in Glasgow. If you think the Society

should recognise someone for their contribution to the bleeding disorder community and/or the Haemophilia Society please write to me at [email protected] or at our office address by 6th October telling me why you think this person deserves an award. We’re also very pleased to report that in the past few months two successful events for young people have been held. You can read all about the Caythorpe Park activity weekend on 1 and there will be a report on the teenagers’ trip to Berlin in the next issue. The youngsters had a great time and we’d like to thank all our excellent volunteer helpers without whom we couldn’t carry out these events.

And finally don’t forget the Society’s Annual Conference and AGM taking place this year at the Beardmore Hotel and Conference Centre Glasgow on 5th – 6th November. If you haven’t already registered you still have time as there are still places available. We hope to see you there.

Very best wishes Chris JamesChief Executive

Conference and Annual General Meeting Meeting with Anne Milton MP

4 5

On 29th June the Society joined other representative groups and individuals in a meeting with the Minister to discuss the Government’s recent review and new arrangements. Full details of the Contaminated Blood Campaign are available on the website www.haemophilia.org.uk. The main outcomes are listed below:

This year’s Conference and AGM will take place at the Beardmore Hotel and Conference Centre, Glasgow on 5th and 6th November. If you haven’t registered for a place you can still do so by contacting:

Amy Jo DaltonConference Solutions27 Chester RoadCastle BromwichBirmingham B36 9DA

[email protected] or 0121 766 7788

Further to our recent mailing, there is also still time to register nominations for Trustee positions on the Society’s Board. Please contact Tom Bradley on [email protected] or 020 7831 10120 for a nominations pack.

1. The Minister agreed to write to The Prime Minister, The Deputy Prime Minister and The Secretary of State for Health expressing the extreme disappointment of the community.

2. The Minister said that in terms of overall budget the next opportunity would be the Comprehensive Spending Review.

3. The Minister agreed to review current Skipton Stage 2 criteria with an expert panel to include a person affected.

4. The Minister agreed to look at the concerns raised over the rejection of current claims to Skipton.

5. The Minister agreed to meet with Caxton Fund Trustees to express the desire that the process to make claims be made as easy as possible.

6. The Minister agreed that the Government should take into account the results of the Penrose Inquiry when they are published.

We will continue to keep you informed of any developments.

Fit for the Future: Haemophilia Services in the New NHS

7

On the 22nd June 2011 at a reception in Portcullis House the Society launched its report “Fit for the Future”. The report developed in partnership between the Society and Bayer was based on the findings of a series of surveys on the future of bleeding disorder services. The meeting which was attended by people affected by bleeding disorders, health professionals, commissioners and parliamentarians heard from a panel chaired by Jenny Willott MP. The panel - Chris James, Chief Executive of the Haemophilia Society, Dr Charlie Hay, Chair of the United Kingdom Haemophilia Doctors’ Organisation, Dr Dan Jolley, a haemophilia patient and Kate Caston, Head of Programme for Specialised Services, Department of Health - highlighted key areas of the report and took questions from the audience.

Professor Geoff Savidge The Haemophilia Society was very sorry to hear of the passing of Professor Geoff Savidge. Geoff was the Centre Director at St Thomas’s Hospital for many years. He was instrumental in the introduction of early prophylaxis and recombinant clotting factors to patients in the UK. As a Centre Director he was very supportive of all members of the comprehensive care team and promoted the role of the nurse in haemophilia care along with recognising the importance of physiotherapy in prevention as well as treatment of bleeding and arthropathy. His expertise in inhibitor treatment extended to patients across the UK. He will be greatly missed by those patients who benefitted from his care and treatment. The Society extends its deepest condolences to his family and friends.

The next few years have the potential to determine the future of bleeding disorder services for decades to come. The report outlines the key issues facing the bleeding disorder community and sets out the community’s priorities for the future of bleeding disorder services in the new NHS. The recommendations in the report complement those of the stakeholder workshop on bleeding disorder services organised by the Specialised Health Care Alliance and the North East Specialised Commissioning Group. The report of this workshop is contained in the ‘Newcastle Recommendations’ document. This document and a PDF of the Fit for the Future report are available on the Society’s website www.haemophilia.org.uk or by contacting the office.

6

Remembrance: Professor Geoff Savidge

9

2012 World Federation of Haemophilia Congress

The WFH World Congress is the single largest event in the WFH calendar, and is very important to the global bleeding disorders community. Every second year doctors, scientists, healthcare workers, people with bleeding disorders and haemophilia organisations gather to learn about the latest developments in bleeding disorders treatment, to discuss, to debate and to contribute to a strong global organisation and community.

Next year the event takes place in Paris, France and this is the nearest the Congress has been to the UK for many years. It is therefore a great opportunity for people from the UK to attend. Taking place from July 8-12, 2012, the Congress will feature presentations, workshops, and exhibits on cutting-edge trends in research and treatment for haemophilia and other inherited

8

New haemophilia test for pregnant women

A blood test for pregnant women that can detect haemophilia has been developed by a team from the Royal Free Hospital and the Chinese University of Hong Kong. The experimental technique promises to allow women at risk of passing on the condition to avoid undergoing an invasive test which carries a 1 in 100 risk of causing a miscarriage. At present women who know they are carriers and expecting a boy are advised to have their child at a hospital with a specialist centre. So far 12 women have taken part in a trial for the test (which is still in development) at the Royal Free Hospital.Chris James, Chief Executive of the Haemophilia Society said, “While this may be a long way from regular clinical practices, any new development that avoids for invasive procedures in pregnancy is to be welcomed. It could provide much needed reassurance for known carriers of haemophilia who would not consider invasive methods to determine whether their baby has haemophilia due to the risks involved”.

bleeding disorders. Congress participants will experience a consistent and well-organised meeting with topical medical and multidisciplinary sessions, controlled industry involvement and a cultural component that allows participants to exchange ideas and share a very positive experience. The WFH 2012 World Congress is not to be missed!

Please note that early-bird (discounted) registrations are available until 18th November 2011. You can register by going to :www.wfhcongress2012.org. The website contains the most recent information on the Congress program and the call abstracts. Also included on the website are helpful tips on travelling to Paris, information on getting around the city, and suggestions on where to stay.

10 11

Event: Buddy Awards: Haemophilia Society Event: Buddy Awards: Haemophilia Society

As part of its work to increase awareness of the challenges faced by people with bleeding disorders, the Haemophilia Society launched its Buddy Award scheme, with the help of Dick and Dom, at a packed launch event at the House of Commons on 3rd May.

The annual awards have been created to recognise the vital support provided by the families, carers, friends and teachers of children with bleeding disorders.

With sponsorship from Novo Nordisk, the event involved a photo shoot outside Parliament, where MPs and young people with bleeding disorders were joined by the popular comedy duo, Dick and Dom (BBC Children’s TV presenters Richard McCourt and Dominic Wood).

A cross-party group of 35 parliamentarians, as well as some 150 youngsters and their parents, attended the subsequent lunch reception, hosted by Owen Smith MP. The launch was enlivened by an entertaining speech from Dick and Dom and a call to arms from the chief executive of the Haemophilia Society, Chris James. Novo Nordisk’s UK Managing Director, Viggo Birch, also spoke at the event.

“The fact that most people know little or nothing about bleeding disorders can cause real problems - especially for children”, said Chris James. “These awards not only recognise the vital support children get from those around them but I hope they will also help more people understand

what life is really like for children with bleeding disorders.”

The lack of public awareness of such disorders means that families and friends take on a great deal of responsibility for their sibling/friend and this often goes unnoticed, and the awards celebrate the invaluable contribution they make while also drawing public

attention to the plight of this vulnerable and often forgotten patient group.

To pave the way for the presentation of the first crop of Buddy Awards at a formal ceremony later this year, nomination forms were distributed and the young people took advantage of the opportunity to chat with MPs and take away a personal souvenir photo of a very special day.

The nomination form is on the next page.For more information about the Buddy Awards and to nominate someone for an award please contact [email protected]

12

Event: Buddy Award Nominations Form Sky Diving

13

If you have ever wanted to do a parachute jump here is your chance. The Haemophilia Society is looking for adventurous volunteers to make a

fundraising parachute jump and raise money for sponsoring two children or more to go on our activity weekends.There are three types of jump available – an ‘Accelerated FreeFall’ where you can experience the thrill of skydiving solo from up to 12,000 feet, a ‘Tandem Skydive’ from 10,000

feet attached to a professional instructor and a ‘Static Line’ jump which is performed solo from up to 3,000 feet - and you can jump from any one of over twenty British Parachute Association approved airfields across the UK. No experience is necessary as all training is given and if you raise from £360 (depending on the type of jump you choose) you will receive your jump for free.So if you would like to make a thrilling skydive from 10,000 feet or an exhilarating solo jump from up to 3,000 feet. Give us a call at the office on 020 7831 1020 or send an email to [email protected] - we will send you a full information pack and everything you need to take part in the experience of a lifetime.

Buddy Award Nomination FormNominee name

Nominee address

Nominee postcode

Nominee Email address

Nominee date of birth Nominee age Nominee phone

Please provide your own details belowYour name

Your address

Your postcode

Your phone number

Your email address

Type of Bleeding Disorder

Haemophilia A Mild/Moderate/Severe (please delete) Haemophilia B Mild/Moderate/Severe (please delete)

Von Willebrand’s Type 1/Type 2/Type 3 (please delete) Other Please state type

Supporting Statement

Signature Date

Return to:

Buddy Awards

The Haemophilia Society

1st Floor, Petersham House

57a Hatton Garden,

LONDON, EC1N 8JGUK/CPIH/0411/0007 Date of Preparation - April 2011

Please tick any (or all) of the below statements that apply

to your buddy

My buddy is always there for me

My buddy understands my bleeding condition

My buddy has adjusted their life to help me

My buddy makes living with my bleeding disorder a lot easier

If you would like to explain in more detail, please do so here:

“Not insurable for people with bleeding disorders”.

Accelerated FreeFall - Tandem Skydive - Static Line Take your pick.

14

Benefits Information: Blue Badge

15

Following a recent change in the rules the upper age at which you may be awarded a Blue Badge for your child has increased from under 2 years to under 3 years old. The Blue Badge can reduce parking costs and can help you park in places where it is usually difficult to park.If your child is under 3 years old and has a bleeding disorder we suggest that you apply for a Blue Badge. You can apply through your local authority - check their website or visit their information centre for further information.When you apply you may need to quote the relevant regulation as some local authorities may not be aware of this rule. The relevant regulation is:(The child)...must always be kept near a motor vehicle so that, if necessary, treatment ...can be given in the vehicle or the child can be taken quickly in the vehicle to a place where such treatment can be given. {Reg 3(b) Disabled Persons (Badges for Motor Vehicles) Regulations}Remember that once your child reaches their 3rd birthday they will only be entitled to a Blue Badge if they receive the higher rate of Mobility Component as part of their Disability Living Allowance (DLA).

We will soon be putting more information on our website about Blue Badges and other help with the cost of travel.

Q. How does the re-assessment work?A. The re-assessment is called the Work Capability Assessment (WCA). The first stage is that you will be sent a form ESA50, although you should get a phone call from the Job Centre Plus beforehand to let you know that the form is being sent.We want to monitor how the re-assessment is carried out and how this will affect our members. We want to hear from you as soon as you get a call or receive a form or as soon as possible after. Please mail [email protected] or call 020 7269 0686. We also plan to have some guidance notes on completing the ESA 50 form available on our website by the end of July.It is very important that you give as much information about your bleeding disorder, how you treat yourself, the number of breakthrough bleeds you have had recently and how these have affected your life, particularly your ability to work. Give details of any joint damage you have. If you have Hepatitis C or are HIV+, you should also give as much information about the impact this has on your life.

What’s happening to Incapacity Benefits?

IB to ESA Migration

All people who are currently receiving Incapacity Benefit (IB) will be re-assessed over the next two years. This is as part of the ‘migration’ of all IB recipients to Employment and Support Allowance. We anticipate that many of our members will fail this re-assessment and be pushed onto Job Seeker’s Allowance (JSA) or forced into the appeal system. In either case, your level of benefit income will almost certainly drop.

Also try to get a supporting letter from your Haemophilia treatment centre to send in with the completed ESA50.The second part of the reassessment is a face-to-face interview with a healthcare professional acting on behalf of the DPW. Our experience shows that this part og the assessment underestimates the impact of having a bleeding disorder and ignores the fluctuating nature of our condition. Be prepared in the ‘interview’ to stress that you have ‘worse’ days and ‘better’ days.

16 17

Your questions answered.

Q. What happens if you are awarded ESA?A. You will be paid ESA on the same dates that you would have been paid IB.

The amount of ESA will include a transitional amount. This will mean your total ESA amount will be frozen and not increased each April for inflation until the underlying level of ESA catches up with your current level of IB.

You will also have to engage in the Work Program, attend work-focused interviews, and sign a claimant agreement undertaking to do a list of things to make it more likely you will be able to return to your work. If you do not keep to your claimant agreement you could have ESA reduced.

Q. What happens if you are NOT awarded ESA?A. As we currently understand the situation you can appeal against this decision. However, while you are waiting for your appeal to be heard by tribunal you will only recieve a basic amount of ESA. In almost all cases, this will be less than your current IB,

If your appeal is successful your ESA will increase. This increase will be backdated and you will be paid. This will include the transitional addition bringing your ESA up to your previous IB level.

However, it may take as long as a year until your appeal is heard.While you are appealing against the decision, you can also claim Job Seeker’s Allowance. At the moment we do not feel able to offer guidance on this, but we would like to hear from if you are turned down.

IB to ESA Migration Continued IB to ESA Migration Continued

The decision

A Decision Maker will consider the information from your form, the face-to-face interview, and any supporting letters and compare this with a list of ‘descriptors’. Each descriptor has a number of points associated with it – if the DM decides you have scored 15 points or more, you will be awarded ESA. If less than 15 points, you will not be awarded ESA.We believe that a significant number of our members will score less than 15 points! For more information please contact Nigel Pegram on

[email protected] or 020 7269 0686

Questions In Parliament

Harriett Baldwin: To ask the Secretary of State for Work and Pensions what plans he has for the future assessment of haemophiliacs affected by contaminated blood in respect of their eligibility to continue to receive incapacity benefit. [24403]Chris Grayling: Over a three year period beginning in spring 2011, all claimants of incapacity benefit will be reassessed using the work capability assessment to determine whether they are entitled to employment and support allowance. While we are committed to supporting those who cannot work because of a health condition, we currently have no plans to automatically exclude customers who are haemophiliacs affected by contaminated blood from reassessment.It is important to recognise that any health condition will affect people in different ways, manifest by a wide spectrum of symptoms and functional effect. That is why we assess each case individually to determine if someone is entitled to benefit and whether it is appropriate to help them prepare for a return to work. This will not always involve a face-to-face assessment-where possible, decision makers may use the paper -based evidence available. However, in order to assess people fairly and accurately it is often necessary to assess them face-to-face.

18 19

Oral Hearings are going to continue until at least the end of the year. The Inquiry will look at viral inactivation, testing and screening in relation to HIV before it moves on to take more evidence related to Hepatitis C.

The Inquiry posts a full transcript of evidence on their website each day.(www.penroseinquiry.org.uk)

We also post daily summaries on our own website (http://www.haemophilia.org.uk/ information/latest_news/Follow+the+Penrose+Inquiry). Block summaries are also available and can be sent to you by post if you are not online.

On the 21st of June the European Haemophilia Consortium (EHC) held their 13th Round Table discussion. Over 30 people from across Europe came together to discuss whether or not ‘women with bleeding disorders are the forgotten patients’.

The group considered that the UK was seen to have led the way with developing services, tailored to women’s bleeding disorders and it agreed to share best practice in order to close the gap with care experience by women in other countries, particularly the developing nations. There was a lot of focus on the lack of recognition within society and sections of the medical professions. The issues of stigma were also highlighted. It was agreed that there is a need to make more women aware that symptoms ranging from nose bleeds or bruising to heavy periods

For more information on the Round Table and the outcomes of this event, please contact the EHC on +32 (0)2 761 6627 or [email protected]

Penrose Inquiry European Haemophilia Consortium

could be signs of an underlying bleeding disorder such as von Willebrand’s.

Several practical suggestions were made:

Working with the manufacturers of feminine hygiene products.

Using clear language and having key information translated to reach out to minority groups.

The creation of a European Principles of Care for Women with Bleeding Disorders to compliment the European Principles of Care for Haemophilia.

Raise awareness of warning signs and use menstrual and bleeding scores for detection.

Set up twinning programmes between hospitals and promote in all schools to raise

awareness on disorders hilia Consortium Debate

French Exchange

20

Would you be interested in spending a few weeks away with a French family and then hosting a French person in your home, in the UK in return?

If so please register your interest and send an email to [email protected] or call me on 020 7831 1020.

We are thinking of setting up an exchange for adults and children between the UK and France and we would love to hear if some of you would be willing to participate.

Thank you!

21

Caythorpe Court - Children’s Events

The Haemophilia Society held an activity weekend from Friday 15th April to Monday 18th April 2011 at Caythorpe Court PGL Centre. Caythorpe Court is a fantastic place near Grantham in Lincolnshire.

With 65 acres of grounds surrounding a huge mansion house there were loads of great facilities and even more brilliant activities!

The weekend, which was facilitated by the PGL team. It was attended by 20 children from 8 to 12 years old and was staffed by Haemophilia Society staff, nurses and our Youth Leaders.

The holiday was a great success!

Thank you all for your support and Welcome to Vicky our new Youth Leader!

22

Fundraising Thanks

Surinder Jandor, Steve Walters and Bryony Walters, Kingsley Lawrence, Ben Midgeley, Barry Lusher, Glenda, Paul, Mark and Sara Wort, Panagiotis Christoforou, Jill Kennedy, Natalie Drake, Jean Satterley and Monika Lee all ran brilliantly the London British 10k on Sunday 10th July and have raised £3,250.24 so far.

Tracy McBride and her team organised a Mounted Treasure Hunt up in Yorkshire.Co-organiser of the event James Carrier praised the efforts of his stable-mates and added: “A good friend of ours Steve Makin who has a grandson Oliver Chapman, five, with haemophilia is doing a bike ride from the region to Paris to raise money for the charity and we decided we could help.The riders from the Homestead Livery Riding Club made an impressive £470 for the Haemophilia Society on Bank Holiday Monday despite the absolutely atrocious weather.

Steve Makin and his daughter Laura took part in the London to Paris cycle ride in aid of The Haemophilia Society on 1st June 2011. The cycle ride was over 4 days and 300 miles in total and they raised £1918.80.

Fundraising Thanks

23

Gill Pentecost completed the Inverness Half Marathon despite snow on the ground, freezing rain, wind and 2 degrees! She also completed two other races and raised in total £220.56

Gary Brownson, Fred Brownson, his wife Irene and their grandchildren Connor and Kenzie took part in the Great Baddow Fun Run and raised £286.

As part of the National Garden Scheme Margaret and Den Vaughan of the Northampton Group opened up their garden to serve cream teas and cake. Many thanks to them and all their friends, neighbours and the group’s committee for raising over £500 for the Society.

Fundraising Thanks

This year Kevan Mahoney and his tream managed to raise £3410.46. Last year Kevan completed the 64 mile Northern Rock Cyclone Challenge ride and managed to raise £470 for the Haemophilia Society.

This year he completed the 100 mile ride.Not being content with that, he has also managed topersuade a bunch of his work colleagues and friends to take part in the cyclone as well. As a group they ranged from regular cyclists to complete cycling novices. They wereaiming collectively to cover 10,000 miles of training inpreparation for the event and over 1000 miles on the event day itself. Why the Haemophilia Society? Well this is a cause dear to Kevan’s heart as he has three sons who all suffer from Severe Haemophilia A.

Philip Merry ran the London Marathon 2011 and raised £225.

The Water Babies Team (Wesley Auvache, Helen Langford, Jodie Jones, John Townsend, Charlie Hopkinson, Scot Brown, Neil Blandford, Sharon Tierney, Paul Hedditch, and Gavin Price) completed the British Gas Great London Swim 2011 and raised £1,314.42.

Andy Trolley completed brillianty the Ironman UK on July 31st by doing a 112 mile bike ride and 2.2 mile swim, and he raised £1900

The Haemophilia Society would like to thank you all for your fantastic fundraising work.

2524

Shop Online

Have you heard about easyfundraising yet? It’s the easiest way to help raise money for The Haemophilia Society! If you already shop online with retailers such as Amazon, Argos, John Lewis, Comet, iTunes, eBay or HMV, then we need you to sign up for free to raise money while you shop!So how does it work?You shop directly with the retailer as you would normally, but if you sign up to http://www.easyfundra i s ing.org.uk/causes/haemophiliasoc for free and use the links on the easyfundraising site to take you to the retailer, then a percentage of whatever you spend comes directly to us at no extra cost to yourself.How much can you raise? Spend £100 with M&S online or Amazon and you raise £2.50 for us. £100 with WH Smith puts £2.00 in our pocket and so on. There are over 2,000 retailers on their site, and some of the donations can be as much as 15% of your purchase.Save money too! easyfundraising is FREE to use plus you’ll get access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us, you’ll be saving money yourself.Please sign up athttp://www.easyfundraising.org.uk/causes/haemophiliasocand start making a difference...simply by shopping. Thanks!

26

World Haemophilia Day was accompanied by the roar of high performance racing cars recently, with a special event organised by Bayer Healthcare at Silverstone racing circuit in the heart of England.

While the aim of the day was to bring together people with haemophilia, their families and leading experts in the community, this was also intended to be a fun day, a little out of the ordinary.

The event was attended by nearly 150 people and their families from the UK’s haemophilia community. After a morning reception, tours of Silverstone took in the circuit’s exclusive clubhouse, learning about the track’s history, and finished with a photo opportunity on the famous winners’ podium.

This year, under the banner “Live Your Best Life”, Bayer has encouraged people to get together at events in more than 50 countries worldwide to celebrate the accomplishments of the

Did you know that you can generate funds for the Haemophilia Society through recycling your used inkjets or toners, old mobiles, and IPods, or even CDs and DVDs?

For businesses they can provide a FREE box to collect cartridges in and then arrange a FREE collection when the box is full.

You can view the current list of accepted items at www.recyclingappeal.com/priceguide/

haemophilia community.

On the “speakers’ podium” at the UK event, guest of honour was Mark Skinner, President of the World Federation of Haemophilia. A severe haemophiliac himself, Mark stopped off in the UK as part of his international work to build and extend the global haemophilia community, in which twinning and exchange arrangements have helped to build a global support network for those with, or working with, the condition.

Kate Khair, Nurse Consultant at Great Ormond Street in London, talked about a new – shortly to be launched - social networking site for young people with haemophilia and Chris James of the UK’s Haemophilia Society also took the opportunity to bring guests up to date with recent activities at a local and national level, including the completion of a report on the state of haemophilia care in the UK, which was presented at the Houses of Parliament in June.

27

World Haemophilia Day at SilverstoneRecycling Appeal

Denis Lopez, 18, from Managua, Nicaragua is the youngest of seven children. He lives with his mother and sister in a tiny shelter. The floors are bare damp earth, the walls are thin planks with wide gaps, and the only illumination comes from one light bulb hung by a wire from the ceiling. Cooking is done outside in a covered corner of the yard.The challenges of maintaining adequate hygiene in this environment are many. As a haemophiliac, Lopez has learned the hard way to take extra precautions to avoid injuries and risks. He is one of approximately 300 individuals in Nicaragua known to have haemophilia. Fortunately for Lopez the one facility in all of Nicaragua specialising in his illness is located nearby at the Red Cross Hospital in Managua, which is an established partner of US based charity the National Cancer Coalition’s (NCC) specialty medicine access program. Working with Pfizer, the

NCC has been able to provide much-needed haemophilia medicine donations to patients like Denis in the developing world. The donations target overseas public health facilities that treat underserved patients with the specialised medicines that they require for good health. Before the donation, very few treatment options were available for low-income patients with haemophilia in Nicaragua. “This is the first time that Nicaragua has had these types of modern factor medicines available to help our underserved haemophilia community,” said Dr. Rene Berrios Cruz, Director of the Red Cross Hospital. As a whole, over 30 million international units in 2009 – 2011 of haemophilia treatment to individuals with either Haemophilia A or Haemophilia B blood-clotting disorders. With Pfizer’s help, hundreds of children with these rare genetic diseases will gain access to treatment.

2928

Pfizer treament and donationGrifols announces combined operations with Talecris

On 8th June 2011 it was announced that Grifols, a biopharmaceutical manufacturer based in Barcelona, Spain has begun to merge its operations with Talecris Biotherapeutics in order to function as one company.

“The union of our two companies provides an infusion of energy and talent, and strengthens our commitment to our shared mission of providing life-saving therapies to patients with rare, chronic diseases,” said Victor Grifols, President and CEO of Grifols. “The strength of our combined company

is not simply its size; rather, it is the potential to achieve more for patients in the future than either company would be able to accomplish on its own.”

It is intended that combining the respective capabilities of the two companies will allow Grifols to extract more products from each litre of plasma and thus increase the quantity of products and choices available to patients. It is also hoped that it will improve patient access to critical care protein therapies that are not widely available in many countries.

Grifols Announces Combined Operations With Talecris

30

Whos Who

31

Dennis Galley has contacted the Haemophilia Society from Canada. He is researching the orgins of Haemophilia B in his family. His great-grandmother, Elizabeth Cline, carried the gene and was born in Ontario in 1848. Her mother’s maiden name was Nelson and they came from Clones in Ireland. Her father, William Cline, came from Southwell in Nottinghamshire. Mr Galley is looking for anyone who might have a family connection or who carries the “T to C transition at nucleotide 31331 (exon H). Ile to Thr at codon 297” gene mutation as this could be from a common ancestor.

Mr. Galley can be contacted by email at: [email protected], or by regular mail at R.R. 3, Port Elgin, Ontario, Canada.

Research into the Origins of Haemophilia B

Who’s Who?

31

Nadine BrownPolicy & Communications [email protected]

Justin HayzeldenTrusts & Statutory Fundraising Offi [email protected] 7269 0867

Dan FarthingPolicy &[email protected]

Nigel PegramBenefi tsThur. & [email protected] 018 6068

Susan WarrenNational [email protected] 557 5953

Tom Bradley

Membership &[email protected]

Claire TreguerCommunity& Events Offi [email protected]

Rachel GoodkinFinance & Offi [email protected]

Georgie RobinsonInformation &[email protected]

Chris JamesChief [email protected]

Who’s Who?

31






Tom Bradley






Who’s Who?

31






Tom Bradley






Who’s Who?

31






Tom Bradley






Who’s Who?

31






Tom Bradley






Alison Smith Policy [email protected]

David HendersonLocal Groups [email protected]

PR & CommunicationsIntern

THE HAEMOPHILIA SOCIETY1st Floor, Petersham House 57a Hatton Garden, London, EC1N 8JG

Tel: 020 7831 1020 Fax: 020 7405 4824Email: [email protected]

HAEMOPHILIA SCOTLAND.4b Gayfield Place, Gayfield Place Lane, Edinburgh, EH7 4AB

TEL: 0131 557 5953

www.haemophilia.org.ukwww.inhibitorsupportgroup.org

www.youngbloods.org.uk

Freephone information and advice helpline sponsored by Verizon

FREEPHONE: 0800 018 6068If you cannot speak to the the correct person when you call they will call

you back as soon as possible (within a week).

Registered Charity No: 288260 (SC039732 within Scotland)Member of the World Federation of HaemophiliaPresident: The Rt. Hon The Lord Morris of Manchester AO QSOChair: Liz Rizzuto

THE HAEMOPHILIA SOCIETYOpinions expressed in HQ do not necessarily reflect those of the Haemophilia Society. We welome non-commercial reproduction of articles on the understanding that acknowldgement is made of HQ as a source.

Thanks go to the following Pharamaceutical companies who are providing valuable support: Baxter Bioscience, Bayer, CSL Behring, Grifols, Novo Nordisk, and Pfizer Pharmaceuticals. Copies of the Haemophilia Society’s commercial funding guidelines are available on request.The content of HQ is for general information only. If you are experiencing symptoms or you are concerned about any of the issues raised in the magazine, we advise that you consult your doctor.

To ensure that people affected by bleeding disorders have the freedom to make

choices and seize opportunities

Stay in touch

Autumn 2011 HQ Magazine

Documents

Transcript of Autumn 2011 HQ Magazine