CAMPAIGNS: Haemophilia Society wins vital support - Lobbying

Client: The Haemophilia Society PR Team: In-house and Weber Shandwick Campaign: Raising the profile of haemophilia Timescale: February 2001 - January 2003 Budget: £130,000 (approx)

Up until last month, the Government refused to supply all the UK's 5,000 people with hereditary blood condition haemophilia free access to the safest form of treatment - recombinant.

Recombinant is a genetically modified blood replacement treatment that cuts out the risk that haemophiliacs, who rely on regular blood treatment, can be infected with new diseases through contaminated products. These have tragically included HIV and hepatitis C but now potentially include vCJD.

Until now, just 25 per cent of UK haemophiliacs had free access to recombinant.

Successive ministers have also denied financial compensation to the 95 per cent of sufferers exposed to hepatitis C in the late 1980s through infected NHS blood stocks.

Following the media uproar over the mass HIV infection, incoming Prime Minister John Major set up a fund to help those hit by HIV, but hepatitis C had yet to be identified.

Objectives

To raise the profile of haemophilia. To persuade the Government to stump up cash for all people with haemophilia to receive recombinant. At the beginning of the campaign, only those haemophiliacs in Scotland and Wales, plus those under 16 across the UK, received the treatment.

To persuade the Government to provide a financial assistance package for the bulk of those with haemophilia who contracted hepatitis C from infected NHS blood products.

Strategy and Plan

To target key decision-maker the Department of Health, through a brace of channels. The first was direct lobbying, explaining the needs of people with haemophilia, the justice of the cause and the ways in which the campaign might be affordable.

On top of this, the campaign involved leveraging the support of the media and Parliament. Key supporters were recruited from within these groups and brought on board.

First off an All Party Parliamentary Group for Haemophilia was created with MPs and Lords recruited to be officers and members. Following an intensive letter-writing campaign by haemophiliacs, the group is now 60-strong.

The campaign used various Parliamentary mechanisms to raise the issue with ministers such as questions to the Prime Minister and Early Day Motions.

Campaigners then created a Haemophilia Society Working Party that for the first time produced a properly costed proposal for a financial assistance scheme, for those who contracted hepatitis C from their treatment. These proposals were launched to the media following pre-briefing meetings with the Health Minister and selected groups of MPs.

Then a Carpet of Lillies Day publicity stunt was devised, which saw around 30 MPs wear the lily (a recognised symbol of haemophilia) on their lapel to demonstrate their support.

Briefings were held with a few key journalists who wrote about the campaign at regular intervals. These gained extensive media coverage in national and regional print and broadcast media.

Measurement and Evaluation

The campaign generated a great deal of political contact and briefing opportunities, including several meetings with health ministers and dozens of MP briefings.

Media coverage was secured in all national newspapers, BBC TV and radio, as well as on ITN.

The strongest support within the media came from The Guardian and the Daily Record, which both wrote regularly and supportively on haemophilia issues.

Results

On 12 February 2003, the DoH announced it was making £88m available over the next three years to provide recombinant to all people with haemophilia in the UK, rather than just to one-in-four as previously.

Progress has also been made in securing financial assistance for those with haemophilia who contracted hepatitis C from their NHS treatments.

The Working Party produced its report in July 2002, recommending a £52m-a-year support package. This report was presented to Health Minister Hazel Blears who is considering the proposals.

In Scotland, the Health Minister Malcolm Chisholm MSP established his own 'expert group', led by Lord Ross, to look at the options for a financial assistance scheme. The group - whose membership was hand-picked by the minister - recommended a substantial compensation package for affected persons in Scotland.

While the minister has since rejected the findings of his own group as 'unaffordable' its report drew support from politicians and the media.

This has been reflected by Scotland's best-selling newspaper, the Daily Record, running a front page campaign on behalf of victims of the infected blood tragedy, with one memorable edition headlined: 'Give them the bloody NHS cash Malcolm!'

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