How Irish Haemophilia Society interacts with Government and Health Authorities

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Brian O’Mahony

CEO, Irish Haemophilia Society

Barcelona, June 2022

Haemophilia in Ireland

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• Haemophilia A: 685, of whom 216 severe
• Haemophilia B: 223, of whom 51 severe
• Von Willebrands: 1,859, with 7 Type 3
• Rare bleeding disorders: 806
• Inherited platelet disorders / Unknown aetiology: 358

• 1995 - 1997: Recombinant Factor for all

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• 2017: Ireland switches all FIX patients to EHL FIX
• 2018: Ireland switches all FVIII patients to EHL FVIII
• 2019: Hemlibra an option for all with FVIII inhibitors

or severe FVII deficiency

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96% of children on Prophylaxis

95% adults on Prophylaxis

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Background to development:� successful and persistent advocacy

• 1989- campaign for members affected by HIV- led to fall of Government and General election
• 1991-compensation campaign for HIV
• 1994-1997: Compensation for Hepatitis C
• 1997-2001: Discussions on Tribunal of inquiry into HIV and Hepatitis C infection
• 2001- Inquiry with massive media coverage
• 2002- Inquiry report with recommendations for future from Society

1989 and 1991 Political/ Media campaigns

Contaminated Blood Inquiry Report 2002- used effectively to set future direction

• Establishment of statutory National Haemophilia Council

- Health Ministry

- Key centre directors

- I.H.S

Haemophilia Product Selection and Monitoring Advisory Board ( HPSMAB)

- Advises on procurement of all haemophilia medications

Organisation of Care

• National Budget for replacement therapy
• Products selected nationally by HPSMAB including Doctors, Society and payers
• Practice that a proportion of any savings reinvested in comprehensive care
• Close collaboration between Society and individual centres and between centres collectively and Society
• Society receives majority of our funding from Health Service grant

How we engage with Health Authorities

• Regular scheduled meetings with key Ministry officials- NHC and HPSMAB meetings

- at least 6 meetings per year, in Society office

• Offer assistance in education of new officials on Haemophilia
• Develop contacts and collaborative working
• Officials can become advocates for Haemophilia within the system
• Understand their viewpoint and learn how the system and decision making works

How we engage with Government

• Obtain contact details of Minister’s special advisors and use them as preliminary channel to Minister
• Prepare strong memo’s based on evidence, fact
• Collect and utilise outcomes of your work including outcome of previous Government funding committed
• Be forceful ,respectful and brief- summary for Minister and memo for officials
• Have a clear ask and cohesion between Society and clinicians – focused advocacy
• Provide assistance in other areas- EG. Blood Transfusion, Scoliosis, development of other NGOs

Measuring Outcomes: Impact of switch to EHL factors in Ireland

B O Mahony, Presentation at ISTH 2019

Measuring the Impact of switch to EHL factors in Ireland

• Using PROBE quality of Life survey tool:
• Reduction in Annual Bleed rate – prior to change, 29% had > 8 bleeds/year. Post change, this decreased to 0%
• Reduction in issues with reduced range of motion in joints
• Reduction in frequency of pain medication use
• Reduction in Acute and Chronic pain
• Reduction in Chronic pain in damaged joints
• Reduction in impact of activities of daily living

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• Clear impact on individuals quality of life (HRQoL) after switch to EHL products

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B O Mahony, Presentation at ISTH 2019

Tender Outcomes 2002-2018

• 8 FVIII tenders
• 10 FIX tenders
• 6 VWF tenders
• 5 FX tenders

• Cost avoided compared to previous system:
• €175 million
• Discounted for real value:
• € 275 million
• Includes € 22.74 million savings in handling fees and tax on fees
• Some savings reinvested in comprehensive care

Unpublished report,, Brian O'Mahony

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International Comparison�Ireland / Belgium

Data: Brian O'Mahony

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Example:�Hepatitis C Treatment

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• Society worked extensively with every individual member with hepatitis C to promote treatment and support via treatment
• Specific publications, meetings, peer support
• Success rate with previous Hep C treatment regime:

: National- 51% / Haemophilia 80%

• Ask- prioritised access to new

Hepatitis C therapies for PWH

Engaging with Government

• Make your case clearly
• Provide data, evidence
• Communicate results- most NGOs do NOT do this
• Thank them publicly if successful outcome

: hepatitis C eradication

: tender outcomes

Minister attends Annual Conference in 2018..

Minister launches Research Project

The overall goal is to make fundamental discoveries in relation to haemophilia biology, thereby enabling novel approaches to patient stratification and ultimately personalized management of haemophilia and haemophiliac arthropathy.

From the Press Release:�World Haemophilia Day ,2022

Speaking at the launch of World Haemophilia Awareness Week, Minister for Health, Stephen Donnelly, TD said: “Since the publication of the Lindsay Tribunal Report 20 years ago, Ireland has come a long way to ensure quality treatment options for patients. Today, we remember all those Haemophilia patients who were impacted and their families.

“Awareness days such as this, help us to raise further awareness and educate people about this rare disease. I would like to commend the work of the Irish Haemophilia Society, The National Haemophilia Council, the HPSMAB and the haemophilia treatment centres for their continuous hard work and dedication in providing quality care for those living with Haemophilia to improve quality of life for all affected.”

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Develop working relationships with key media…and use Patrons

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Integrating Haemophilia Organisations into decision making nationally

• Advocate for role on formal decision making bodies
• We can bring knowledge, data, information, perspective.
• NMO leaders need to be indispensable part of the decision process in their country
• Get in the room where decisions are made

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Brian O Mahony, Plenary Lecture, WFH Congress 2022

Photos from T. Petrobelli presentation, GHAL summit, 2022

Future Advocacy: Moving from Transactional - Transformational

• Basics of advocacy will remain- need to make a strong case with good data and clinician/patient organisation partnership
• Relationships with decision makers may have to be started or maintained virtually
• Make your organisation part of the solution - not part of the problem

: Engage with new thinking- contribute constructively to shared vision

• Move from participation to co-designed service
• Use the expertise, data, skills in our community to propose solutions which fit in with new reality and protect our service/ resources
• Knowledge + diplomacy + data + credibility = effective change

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Brian O Mahony, Plenary Lecture, WFH Congress 2022