Ariane Weinman presents at ESMO 2021 on how the integration of a specific section on rare cancers into NCCPs can support patients' from diagnosis to treatment

1. Patient Advocacy Track
RARE CANCERS
How the integration of a specific section on rare cancers
into national cancer control plans can support the rare
cancer patients’ journey from diagnosis to treatment
Ariane Weinman – EURORDIS-Rare Diseases Europe
20 September 2021

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DECLARATION OF INTERESTS
Ariane Weinman
I have no disclosure.
For full details of EURORDIS funding organisations and revenues in the years 2009 to 2020:
www.eurordis.org/financial-information-and-funding
Ariane Weinman – EURORDIS-Rare Diseases Europe

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What is a National Cancer Control Plan?
Ariane Weinman – EURORDIS-Rare Diseases Europe

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European Partnership for Action Against Cancer (EPAAC)
The European Partnership for Action Against Cancer (EPAAC) was launched in 2009, after the European
Commission published its Communication on Action Against Cancer: European Partnership.
EPAAC brought together stakeholders from the entire cancer continuum in Europe - 38 associated partners
and 90 collaborating partners - in an effort to share knowledge and expertise to prevent and control the
burden of cancer.
Ariane Weinman – EURORDIS-Rare Diseases Europe

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EPAAC has defined National Cancer Control Plan (NCCP) as:
“A public health programme designed to reduce the number of cancer cases and deaths and improve
quality of life of cancer patients, through the systematic and equitable implementation of evidence-based
strategies for:
• prevention,
• early detection,
• diagnosis, treatment,
• rehabilitation,
• palliative care,
• research to search for innovative solutions and evaluate outcomes.
It is designed with the aim of making the best use of available resources.”
Source: EPAAC
Ariane Weinman – EURORDIS-Rare Diseases Europe

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A National Cancer Control Plan (or Programme):
• “promotes the development of care management guidelines,
• places emphasis on the prevention of cancers or early detection of cancer cases so as to increase the
possibility of cure and better control and faster return to pre-diagnosis life, and
• plans for the provision of services that will seek to offer as much comfort as possible to patients and their
carers with advanced or incurable disease.
A well-conceived, well-managed national cancer control programme:
• lowers cancer incidence and mortality,
• improves the life of cancer patients, no matter what resource constraints a country faces.
NCCPs are also an effective tool for the communication of the decisions”.
Source: EPAAC
Ariane Weinman – EURORDIS-Rare Diseases Europe

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What the rare disease community says about
National Rare Disease Plans
Ariane Weinman – EURORDIS-Rare Diseases Europe

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Six reasons to adopt a National Rare Disease Plan (NRDP)
1. Recognise and address the specificities of rare diseases in a comprehensive manner by setting up a political and legal
framework, involving all stakeholders, and coordinating all relevant actions at the national and regional level,
2. Map out medical expertise on rare diseases across the country. Enable the adoption of an official process to accreditate Centres
of Expertise (CEs), in charge of providing adequate diagnosis and care through multidisciplinary teams of experts as well as
doing clinical research; and enable the participation of CEs in the current European Reference Networks (ERNs) on rare
diseases,
3. Identify and establish social services and programmes relevant to rare diseases and bridge the gaps between different services
through case management,
4. Better integrate the European legislations (e.g. orphan drugs, paediatric drugs, advanced therapies, clinical trials, cross-border
healthcare,) and European Policy Recommendations (e.g. on CEs, ERNs) into the national healthcare and social systems,
5. Recognise the added value of rare disease patients’ organisations and National Alliances for rare diseases as key partners, and
involve them in decision making committees and programmes,
6. Balance budget and ensure a financial sustainability of the plan by defining a series of specifically funded measures and actions
for improving medical and social care for people living with a rare disease.
Source: EURORDIS
Ariane Weinman – EURORDIS-Rare Diseases Europe

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The place of rare cancers in NCCPs and
NRDPs in Europe
Ariane Weinman – EURORDIS-Rare Diseases Europe

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State of Play: The place of rare adult cancers in NCCPs &
NRDPs in the EU + UK
In the frame of the EU Joint Action on Rare Cancers (JARC), the partner from the Catalan Institute of
Oncology (ICO) conducted a study, in partnership with the JARC coordinator - Fondazione IRCCS Istituto
Nazionale dei Tumori, Milan – and EURORDIS, as well as with the European Society for Paediatric
Oncology (SIOP Europe).
The results of the study for rare adult cancers are published in the article:
Priorities on rare cancers’ policy in National Cancer Control Plans (NCCPs): A review conducted
within the framework of EU-JARC Joint-Action
J. Prades, et al. Journal of Cancer Policy 24 (2020)
Ariane Weinman – EURORDIS-Rare Diseases Europe

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State of Play: The place of rare adult cancers in NCCPs &
NRDPs in the EU + UK
• Method: A Review based on a documentary analysis on the priorities and recommendations in the
area of rare cancers (RCs) in adults was conducted in 15 NCCPs and 18 NRDPs in the EU + UK.
After identifying the areas covered therein, a thematic analysis was performed to allow a narrative
description of the status of RCs’ health policy.
• Result: “Rare cancers [in adults] are hardly addressed in NCCPs and not addressed in NRDPs.
Of the 15 NCCPs analysed, only 8 contained some elements on RCs, and only 3 of these
described specific measures to address this disease group or took a comprehensive approach.”
NB 1: The whole analysis conducted in the JARC also found that paediatric cancers are not enough covered
in the majority of NCCPs.
NB 2: Rare cancers are treated in oncology centres who fall under the scope of a NCCP, this explains why
they are not addressed in a NRDP. However, synergies between NCCP & NRDP are encouraged.
Ariane Weinman – EURORDIS-Rare Diseases Europe

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Ariane Weinman – EURORDIS-Rare Diseases Europe
SOURCE: Priorities on rare cancers’ policy in National Cancer Control Plans (NCCPs): A review conducted within the framework of EU-
JARC Joint-Action, J. Prades, et al. Journal of Cancer Policy 24 (2020)

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Recommendations: RARE CANCER AGENDA 2030
• “National cancer planning should be viewed as an important tool to link the national with the EU level.
• National cancer control plans should always involve a dedicated section:
o on rare cancers in adults,
o as well as a dedicated section on childhood cancers,
o and develop synergies with national plans for rare diseases.
• Innovative instruments should be devised to improve consistency across national cancer plans.
• These dedicated sections are important to establish processes for patient referral and information
sharing.
• Additionally, centres taking care of rare cancer patients, and thus being part of a networking mechanism,
need to be nationally recognised, designated either as hub or spoke and adequately supported to
achieve their missions.”
Ariane Weinman – EURORDIS-Rare Diseases Europe

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Conclusions
Promote the inclusion of rare adult cancers and childhood /adolescents cancers in all the NCCPs
in Europe, with relevant synergies with NRDPs (cross-cutting issues: e.g. development of and access
to orphan drugs, paediatric drugs, innovative therapies, access to cross-border healthcare, adapted social
care, integration…):
• Increase the visibility, disseminate knowledge of rare cancers at national level and European level,
• Facilitate access, shorten delays to accurate diagnosis and adequate treatments and follow up care,
• Map out expertise at national level: Recognise, designate specialised centres for rare cancers &
encourage the:
• Creation of national networks of specialised centres for rare cancers (mainly in big sized
countries),
• Creation of national coordination hub for rare cancers (mainly in small sized countries),
• Increase awareness of rare cancers amongst primary and secondary healthcare professionals and
implement adequate referrals to specialised multidisciplinary expert centres at both national and
European level,
Ariane Weinman – EURORDIS-Rare Diseases Europe

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Conclusions
• Provide adequate rehabilitation and psychological support to patients with a rare cancer,
• Ensure the integration of relevant ERNs for rare cancers in national healthcare systems to optimise
access to the best available expertise in a timely and cost effective fashion, and enhance knowledge
sharing.
• Proposal: The creation of an ad hoc committee for ERNs [….] within each Health Ministry
(involving both health care professionals and ePAGs - patient advocates involved in ERNs’
development - or other patient representatives), is required to ensure the best integration of the
ERN action in the strategy of each Member State.
Source: European Reference Network for rare adult solid cancers, statement and integration to
health care systems of member states: a position paper of the ERN EURACAN (ESMO Open,
June 2021)
Ariane Weinman – EURORDIS-Rare Diseases Europe

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References
• Rare Cancer Agenda 2030: Ten Recommendations from the EU Joint Action on Rare Cancers
• Priorities on rare cancers’ policy in National Cancer Control Plans (NCCPs): A review conducted within
the framework of EU-JARC Joint-Action, J. Prades, et al. Journal of Cancer Policy 24, 2020
• European Reference Network for rare adult solid cancers, statement and integration to health care
systems of member states: a position paper of the ERN EURACAN, ESMO Open, June 2021
• Overview of National Rare Disease Policy in Europe, EURORDIS (accessed Sept. 2021)
• Shaping national plans and strategies for rare diseases in Europe: past, present, and future, V. Hedley,
et al. Journal of Community Genetics, April 2021
Ariane Weinman – EURORDIS-Rare Diseases Europe

17. European Society for Medical Oncology (ESMO)
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