AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB Tel: +44 (0) 1789 451 837

Providing information, support and access toestablished, new or innovative treatments for Atrial Fibrillation

Dronedarone Denied: Shock first Ruling by NICE

The Atrial Fibrillation Association iscalling on all members to appeal toNICE, the body which approvesmedication in England and Wales, toreconsider its recent decision torefuse approval for the use ofDronedarone (Multaq) for AFpatients.

Despite both AFA submitting writtenevidence to the committee and givingevidence at the meeting on 25thNovember 2009, NICE regrettablyannounced that it is proposing to denyDronedarone, the first new anti-arrhythmic drug (AAD) in more thantwenty years, to patients with AF.

Extensive trials have shown thatDronedarone is not only effective intreating AF in large numbers ofParoxysmal AF patients, it is also theonly anti-arrhythmic medication thatimproves long term cardiac health inAF patients.

To the relief of all AF sufferers, trialsalso revealed that the new medicationwas well tolerated and caused farfewer side effects than commonlyexperienced by patients usingcurrently available drugs. It is thoughtthe drug could be suitable for at least55% of patients with Paroxysmal AF(episodes which come and go).

The drug is already approved for usein Europe and the USA, leaving UKpatients lagging behind through adecision which puts money beforequality of life.

The shock decision by NICE will denymany AF sufferers who are currentlystruggling to manage this potentiallydebilitating condition, the chance torestore their long term health.

Make YOUR Voice Heard

AFA is urgently calling for YOUR help.We need your support in makingrepresentations to NICE and theDepartment of Health.

It is imperative that NICE, theDepartment of Health, Ministers andMPs understand the scale ofopposition to this draft guidance. Weneed as many patients, carers,supporters and health professionalsto write expressing a response to theconsultation.We need you to WRITE to NICE byJanuary 24th and ask that they re-think this preliminary decision andrule to allow this medication to AFpatients in England and Wales.

Please send your letter to theChairman of the NICE AppraisalCommittee, Professor Peter Clark(address to the right). Include yourpersonal experiences of living withAF, how beneficial the new treatmentcould be, and the need for cliniciansto have a choice of treatment optionsto help improve the quality of life forpatients.

I hope you will be able to write apersonal letter, as this is a powerfulway to demonstrate the strength offeeling about this draft decision.

However, if you are unable to write apersonal letter, please use theenclosed sample/outline letter, tohelp make your voice heard.

We would urge you to also write to:Prof. Mike Rawlings, Chair of Nice;Andy Burnham MP, Health Secretaryas well as your local MP, explainingthe situation and seeking theirsupport (addresses below).

Please, ACT NOW!

There is a great strength of feelingacross the health and AF communitiesthat the draft NICE guidance onDronedarone will deny patients aninnovative new treatment option.

Life with AF and the potential benefitsof Dronedarone for patients must beunderstood if NICE is to re-evaluateits decision. Make your voice heard.

Details on the appraisal can be viewedat: http://tinyurl.com/ycndso5

More information and a copy of thesample letter can be viewed onlineat www.atrialfibrillation.org.uk

Send your letters to:

NICE, Mid City Place, 71 High Holborn,London, WC1V 6NA;

Rt Hon Andy Burnham MP, Secretaryof State for Health, Department ofHealth, Richmond House, 79Whitehall, London, SW1A 2NL

Please send a copy and responses youreceive to AFA (or email).

AFA calls upon members to ACT NOW to seek a review

Express News Issue 1 - Express News Issue 1 - Express News Issue 1 - Express News Issue 1

www.atrialfibrillation.org.uk info@atrialfibrillation.org.uk

It was amazing to see so many AFAmembers at the BirminghamMetropole who had travelled fromall corners of the UK to meet, learnmore about Atrial Fibrillation andhave an opportunity to askquestions about AF to leadingarrhythmia medical specialists.

Two patients, Bob and Martin,generously shared their movingand inspiring accounts of living withAF. I think the whole audience weregrateful to them and benefitedfrom hearing how they hadeventually restored quality andhealth back into their own lives.

This was followed by the lively andthought provoking debate, “Whereis AF care best managed?” betweenDr. Matthew Fay, GP and ProfessorRichard Schilling, EP.

Professor Patrick Doherty gave aninformative presentation about ‘AFand Exercise’ which almost had usall heading for the gym!

Talks considering triggers for AFand whether Catheter Ablation is acure, answered and equally raisedquestions; however, a far greater

Martin recalled his struggle to find information

AFA Patient Day

understanding of the complexity oftreating AF was achieved.

Ground breaking results fromrecent trials on a new system toassess the risk of stroke in anindividual were summarised byProfessor Gregory H Y Lip. The workhad further refined the CHADS2risk assessment system in order tofocus on those at ‘moderate’ riskof stroke who were often facedwith an unclear choice betweenanti-platelet (e.g Aspirin) or anti-coagulant (e.g Warfarin) treatment.

With further talks considering,‘Cognitive behaviour therapy forAF’ and ‘The role of the generalcardiologist ‘ it was clear thatfinding prompt and informedmedical support was critical in thejourney to re-gaining a good qualityof life.

Feedback from those who attendedhas been extremely positive, andAFA look forward to meeting moremembers as well as seeingreturning friends in 2010.

“I came away understanding so muchmore, and feeling empowered to begin at long last to ask questions about my own care.”

Title:______________________

Name:____________________

Email:____________________

Telephone:________________

Address:___________________

__________________________

__________________________

Post Code:_________________

I enclose £20 cheque (payableto AFA) to attend HRC AFAPatient Day.

Tick as appropriate

I am a patient

I am a carer

Other (please specify)

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Book Now for AFA Patient Dayat HRC 2010 and Receive

Early-Bird Discounts!

Being held on Sunday 3rdOctober at the BirminghamMetropole hotel. The day willoffer presentations from leadingarrhythmia specialists, accountsfrom AFA Patient members,opportunity to ask questions andtime to meet fellow AFAmembers.Early-bird registration (until01.06.2010) is at the reducedprice of £20.00 per person; afterthis date it will be £30.00.All patient registrations throughHRC are £50.00. To register fordiscounts please book DIRECTLYthrough AFA. Send the formbelow to:Jo Jerrome AFA PO Box 1219,Chew Magna, Bristol, BS40 8WB

Sunday 18th October 2009 at the Heart Rhythm Congress

“I am a GP with AF – attending the recentAFA Patient Day has helped me both as apatient and carer… I would recommend itto all GPs and patients!”

Comments and opinions volunteeredby members help to inform AFA onwhat further information is needed andhow this can best be delivered.

Raising awareness of the patients’experience with AF will help changeand improve services. Thereforerecording YOUR experiences andsharing YOUR opinion is very important!

Please consider sharing yourexperiences with us, either by letter oremail to info@atrialfibrillation.org.ukso that together:

WE CAN MAKE A DIFFERENCE

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB Tel: +44 (0) 1789 451 837

Last year more than a thousandevents took place across the UK tohighlight our ‘Know Your Pulse’campaign and AFA supported aparliamentary launch at the Houseof Commons, with over 100attendees being present. Theevent was also educational withnurses on-hand to teach guestshow to take their own pulse.

Following the success in 2009 ofthe campaign, AFA is again joiningtogether in partnership withArrhythmia Alliance to continuethis very important initiative.Arrhythmia Awareness Week 2010(AAAW) will be held during 7th–13th June, although there is anearly start for AFA on Friday 4thJune, with the first AFA Ball held atthe Queens Hotel, Leeds.

Promising an evening of good food,entertainment and ensuring the‘fun’ is in ‘fund raising’, pleasecontact AFA so you can reserveplaces and avoid disappointment.

A few days later, on Monday 7thJune, Arrhythmia Alliance willlaunch AAAW 2010 at the House ofCommons, again campaigning to‘Know Your Pulse’.

The primary aim of the ‘Know YourPulse’ campaign is to raise publicand medical awareness of the pulseas a means of identifying potentialcardiac arrhythmias like AF. Thelong term goal is to ensure pulsechecks become routine whensomeone visits their GP.

How YOU can help

You too can play an active role inthis campaign. We are asking allmembers to write to their GP andthe Chief Executive of their Cardio-vascular Network to ask the follow-ing questions:

� Have you or are you planning toinclude routine pulse checks inthe annual flu inoculation pro-gramme?

� Are manual pulse checksplanned to be included in yourown 40 – 74 year old HealthChecks?

� Do you offer pulse checks aspart of your routine GP service?

� If you have begun any of theseprogrammes, do you have anyinformation of the number ofarrhythmia patients newlyidentified?

Simply drop your letter in at yourlocal GP surgery, and at the sametime, ask for the address of thelocal Chief Executive of the Cardi-ovascular Network.

Alternatively, call AFA (01789451837) for assistance in findingthe appropriate address.

Your letters will help raise aware-ness of this initiative, the need forit, and so support our campaign tomake the simple, manual pulsecheck a routine part of a trip tothe GP.

Atrial Fibrillation Association ispleased to partner ArrhythmiaAlliance in 11 Patient Meetingsbetween March and July 2010 andwe would love you to come.

These meetings will provideinformation on how to get best outof your local services. There will beopportunity to ask questions andfind out more about Arrhythmias,and Atrial Fibrillation. As well astime to meet and talk with fellowmembers.

Registration fee is £13.50 person.This includes refreshments andlunch.

Regional Meetings Locations: Midlands – Birmingham • Midlands – Oxford• East Midlands – Cambridge • South – Reading • North Leeds • NorthWest – Manchester • North Wales – Wrexham • South Wales – Cardiff •South West – Bristol • Scotland – Glasgow • Northern Ireland – Belfast.To register to attend a Regional Meeting, please complete and returnthis form:Full Name:__________________________________________________Email:_______________________________________________________Telephone:__________________________________________________Address:________________________________________________________________________________________________________________Post Code:___________________________________________________Regions interested in:_____ __________ ___________________________I am a patient /I am a carer - please delete as appropriateWe will email / phone when dates and venues have been confirmed. Pleasesend to: Jo Jerrome, PO Box 1219, Chew Magna, Bristol, BS40 8WB oremail: Jo@atrialfibrillation.org.uk

www.atrialfibrillation.org.uk info@atrialfibrillation.org.uk

The Atrial Fibrillation Association (AFA) andArrhythmia Alliance (A-A) provide Department ofHealth endorsed resources including Pulse CheckCards. You can access these either via the web sitethrough contacting Jo Jerrome: +44 (0) 1789 451837for free paper copies or download them from ourweb site: www.knowyourpulse.org

The AFA web site at www.atrialfibrillation.org.uk,also offers medically approved booklets, toolkits andfact sheets.

Did You Know?

Post Posters and leave leafletswith a GP Pack - Distribute

booklets and promotional itemsto local medical centres,

schools, libraries, GP surgeries,leisure and community centres.

Hold a display with a Display Packat a hospital, clinic, GP surgery or

community centre with aselection of information and

promotional items.

Hold a Pulse Check Clinic - PulseCheck Your Friends and Family –using the A-A Pulse Check sheets,help those close to you tobecome more ‘pulse aware’ andmonitor their pulse duringAAAW. Email or send your resultswith us, sharing any previouslyundetected arrhythmiasdiscovered that week.

Write to your MP asking themto promote the importance ofprocedural pulse checks and

encourage local constituents todownload the Pulse Check Card.

Send a letter to your health

authorities to find out what

they are doing about pulsechecks in their area.

Fundraise with a coffee

morning, raffle, sponsored

event, cake sale, quiz, ball or

dinner.

Share your story - Patientstories are an important way ofgetting the message out there.

And this is where we reallyneed your help. If you were

diagnosed with an arrhythmiaby having your pulse checked,

your story could help toreinforce the importance of thissimple health check procedure.

Is Your Finger On The Pulse?Be Part of AAAW 2010: June 7th -13th

Published January 2010