Access to Medicines Case Pack
The Eastern Region Pharmaceutical Group (ERPG) commissioned HJCL to research and write a case pack of materials for MPs and policy-makers.
The ERPG is the voice for the research, development, marketing and manufacturing based activity of the pharmaceutical industry in the east of the UK, home to one of the largest concentrations of pharmaceutical and biotechnology activity in Europe.
The ERPG had been concerned about healthcare access issues and wanted to highlight the obstacles that patients face in the UK when trying to secure the treatments and services they need. Much of the debate on access to medicines in the UK tends to focus on one particular pharmaceutical product issue, or on a narrow point of policy. The idea behind this pack was to demonstrate that there are a myriad of factors that stand in the way of a patient’s ability to access healthcare services and treatments including, for example, lack of infrastructure, insufficient training or personnel, diagnosis and referral issues.
Six regional case studies were prepared, highlighting the access problems relating to obesity services, hepatitis C, dystonia, pain management, breast cancer and skin conditions. The finished pack was launched at a parliamentary reception in June 2003, before being distributed to MPs and other key policy-makers. In September 2003, Barbara Follett MP tabled an Early Day Motion in the House of Commons to welcome the publication of the case pack. The Motion secured more than 30 signatures of support from MPs.
Pushing Obesity up the Parliamentary Agenda
The prevalence of obesity in this country has tripled since 1980. Over 60% of UK adults are now overweight; nearly 1 in 4 is obese. If current trends continue, one-quarter of all UK adults will be obese by 2010. The prevalence of obesity in children is also increasing.
In January 2001, the National Audit Office set out the significant costs of obesity for the first time – both to the NHS and to the economy as a whole – and called upon the Government to adopt a consistent approach to the management of obesity, with more extensive joint working across the NHS and Government, both nationally and locally.
Frustrated at the lack of progress and commitment at national level, concerned MPs and healthcare professionals decided to form the All Party Parliamentary Obesity Group to act as a focal point for parliamentary concerns about obesity, diet and nutrition. HJCL was actively involved in setting up the Group in 2002 and, in conjunction with the National Obesity Forum, has continued to provide secretariat support ever since.
HJCL is responsible for designing, managing and implementing the Group’s rolling programme of parliamentary, policy and media relations activities including writing and producing quarterly newsletters, briefing MPs and peers, liaising with third parties, planning and coordinating bi-monthly meetings, writing meeting reports and organising parliamentary receptions and visits.
ACSMA: Anti Coagulation Self Monitoring Alliance
There are more than 1.2 million people in the UK on warfarin, but fewer than two per cent of them benefit from self-monitoring. People on long-term warfarin need to have regular blood tests to check their internationalised normal ratio (INR), or the level of clotting tendency. These blood tests affect patient’s personal and professional lives making them regularly dependent on attending a hospital, GP surgery or anticoagulation clinic for a simple test.
In October 2012, the Anti Coagulation Self Monitoring Alliance (ACSMA) (comprised of four of the UK’s leading charities and patient groups) launched itself as an alliance with an objective.
“To ensure INR self-monitoring technology is available, accessible and on prescription through the NHS for eligible patients.”
Over the past five months HJCL has driven forward ACSMA’s concerns surrounding self-monitoring technology bringing them to the attention of healthcare professionals, policy makers and Government via a concerted public affairs, parliamentary and media campaign. To date 444 individuals and organisations have pledged support. These include Little Hearts Matter, ISMAAP (International Self Monitoring Association of Oral Anticoagulated patients) the British Heart Foundation and the NHS Alliance.
Campaign achievements so far include:
- 1:1 meetings with Dr Archie Prentice – Royal College of Pathologists, Professor Richard Thompson – Royal College of Physicians, Baroness Gardner, Lord Colwyn and Baroness Masham
- Support from Secretary of State for Health Rt Hon Jeremy Hunt and Parliamentary Under Secretary of State Rt Hon Earl Howe
- A parliamentary reception hosted by Virendra Sharma MP with speakers: Shadow Health Minister Andrew Gwynne, Stephen Johnson (Department of Health lead on 3 million lives)
- An Early Day Motion tabled in the House of Commons with 51 signatures to date
Implementing new NICE guidance
For pharmaceutical manufacturers, patients and professionals alike, receiving a positive recommendation from the National Institute for Health and Clinical Excellence (NICE) about the use of a new medicine represents the culmination of two or more years of evidence-gathering, submission-writing and appearances before the NICE Appraisal Committee. However, receiving positive NICE guidance is only the start of the process; the guidance then needs to be implemented by the NHS. Healthcare professionals are required to take NICE guidance “fully into account” when exercising their clinical judgement. Primary Care Trusts have certain mandatory obligations to fund positive guidance and local NHS organisations and commissioners also have a duty to implement NICE guidance.
HJCL was commissioned by one pharmaceutical company to work with its market access team to develop a series of presentations and meeting materials to help educate and inform its sales and marketing teams, as well as a variety of external audiences about the status of the NICE recommendation and the implications for its implementation.
The Rheumatology Futures Project
The Rheumatology Futures Group (RFG) – a coalition of patient and professional organisations representing the entire rheumatology community and the pharmaceutical industry – commissioned the King’s Fund to carry out research exploring the impact of NHS structural reconfiguration and service redesign on people with rheumatoid arthritis (RA) and rheumatology health professionals. The resulting report, “Perceptions of Rheumatology Patients and Professionals”, concluded that patients were experiencing “alarming and unacceptably wide variations” in levels and quality of care, with Government policies having unintended knock-on consequences for patients and professionals alike.
HJCL worked with the RFG to develop and implement a comprehensive communications and stakeholder engagement campaign, so that the RFG could use the King’s research to identify areas where the service was failing patients and professionals, propose possible solutions and make the case for change to ministers, policy-makers and the NHS.
East of England Plan
In November 2004, the East of England Regional Assembly endorsed government proposals for a draft regional development strategy. The draft strategy set out policies for economic development, housing, the environment, transport, waste management, culture, sport and recreation and mineral extraction.
So far as the number of houses was concerned, the draft strategy included proposals to build a total of 79,600 new dwellings in Hertfordshire by 2021. These plans – if implemented – would have a significant impact on the county in terms of road and rail infrastructure, green field development, congestion, schools, health services and water supply. The number of houses proposed would also result in development on green field land around Harlow and Stevenage.
Hertfordshire County Council embarked on a full-scale information and media campaign to raise awareness of the content of the draft regional strategy and its impact on local residents and businesses.
The Council asked HJCL to provide public affairs support for the campaign and to advise which MPs and third party organisations it should be speaking to, not only about the proposals themselves, but also about the undemocratic process by which the proposals were being adopted. In addition to briefing all Hertfordshire MPs and the Conservative front bench team – in writing and in face-to-face meetings – we supported the Council by drafting parliamentary questions and motions, providing information and statistics for parliamentary debates, and sending regular written updates to MPs and other interested organisations, such as Transport 2000 and the Campaign for the Protection of Rural England.
Project Managing Health Technology Appraisals
For the pharmaceutical sector, detailed appraisals of drugs by The National Institute for Health and Clinical Excellence (the government’s so-called “spending watchdog”) and the Scottish Medicines Consortium represent an increasing and ongoing need for dedicated project management resource. In the case of a NICE appraisal, the review process can last up to two years.
We have worked in a project management capacity with four different pharmaceutical companies on a total of 10 NICE appraisals and 9 SMC reviews to date. Typically, the project might involve any or all of the following components:
- Advising on overall submission strategy, data requirements and communications with other stakeholders (patient and professional groups, other manufacturers, appraisal committees, NICE, the SMC)
- Advising on and putting in place the appropriate project team and any working groups
- Devising and implementing appropriate processes for internal updates, managing expectations and resources, team meetings and tracking activity
- Overseeing all stakeholder relation activity, as well as coordinating any supporting PR, media or public affairs campaigning activity
- Overseeing the writing and review of the initial submission dossier, as well as subsequent response documents.
EFA Patient Advocacy Workshop
In June 2004, thirty European conference delegates from countries as diverse as Slovenia, Norway, Sweden and the UK attended a practical advocacy and lobbying workshop developed and run by HJCL, in conjunction with Asthma UK.
The workshop formed part of the programme of the ninth annual conference of the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) held in Oslo, Norway.
Drawing upon Asthma UK’s recent ‘Living on a Knife Edge’ campaign as a case example, the workshop concentrated on giving delegates practical tips and advice on how to build an effective advocacy campaign, and included a presentation from Asthma UK and an interactive group exercise. Background materials on the European political and policy-making environment and machinery – researched and wrtten by HJCL – were provided in the form of printed factsheets. All of the written materials, together with copies of the Asthma UK report and workshop presentation slides, were distributed to all delegates in the form of a CD-Rom.
Young People with Arthritis Event
In 2006, HJCL organised several parliamentary events on behalf of the National Rheumatoid Arthritis Society (NRAS), which provides secretariat support to the All Party Parliamentary Inflammatory Arthritis Group (APPIAG).
In December, a parliamentary reception focused on raising awareness of the treatment and care needs of young people with Juvenile Idiopathic Arthritis (JIA). JIA affects between 10,000 and 15,000 children under 16 in the UK.
15 young people with JIA – ranging from 4 years old to 22 years old – were invited from every region of the UK to a tour and afternoon tea in the Palace of Westminster. The young people had been nominated by their health professionals, all of whom accompanied the young people and their parents on the trip. The event was particularly successful as a result of the attendance of over 20 MPs and Peers, keen to meet their young constituents and find out more about living with JIA. The event generated a large amount of media coverage (including interviews on several television stations and GMTV), a mention in the Christmas adjournment debate and important opportunities to follow-up with key politicians on areas of concern.
Supporting Health Technology Appraisals through Public Affairs
With Health Technology Appraisals by the Scottish Medicines Consortium (SMC) and National Institute for Health and Clinical Excellence (NICE) imminent, HJCL has been working closely with another leading communications consultancy to support a leading pharmaceutical company in the market access of a new medicine in the UK. The project has required us to demonstrate our understanding of the mechanisms and processes of both HTA bodies, supporting the manufacturer’s submissions with a sensitive, timely and effective public affairs campaign.
Although decision-making on the clinical and cost effectiveness of medicines is undertaken by independent bodies, external stakeholders with an interest in the outcome can be important and influential allies and advocates. We designed a parliamentary contact programme that built on and expanded our client’s relationships with parliamentarians in Edinburgh and Westminster in order to raise awareness of this exciting new technology and also to generate support for access to it for patients with this particular neurological condition. Through close working with the key patient groups, the development of briefing materials, letter writing and a series of face-to-face meetings, the contact programme has delivered good results at the key stages of the appraisals.
In Scotland, a surprise negative recommendation by the SMC was met with outrage from MSPs – three parliamentary motions highlighted the negative impact of the decision on patients in Scotland and a Parliamentary debate covered the issues (and – crucially – the client’s key messages) in additional detail. This recommendation and subsequent parliamentary activity also received media coverage in Scotland’s leading press, which cumulatively ensured that the environment for another negative decision following resubmission would certainly not be amenable.
In Westminster, a similar contact programme is being undertaken with key MPs with an interest in these issues to support NICE’s Single Technology Appraisal of this product.
An Early Day Motion welcoming the appraisal and the advances the therapy would offer patients received over 50 cross-party signatories.