1. A Patient Organization perspective on the fight against Hepatitis.Achievements, goals
and priorities1.
The introduction of new treatments for HCV in 2014 had a major impact; from a
medical point of view, with the possibility of healing for the first time, and from the
social one, greater visibility of the disease mainly thanks to the mobilization of patients,
relatives and allies to secure access to more effective drugs. However, despite the
progress made in terms of access to treatment, there is still a long way to go in areas
related to of pricing, diagnosis and attention to groups in situation of vulnerability.
Without the pressure exerted by patient organizations, on the streets, offices and hospitals, and
the support of broad sectors of society, it is unlikely that a Strategic Plan for addressing HCV in
Spain´s national health system would have been developed and adopted2, nor public
authorities would have facilitated (through public procurement and financing) access to last
generation medicines. Drugs which have already treated more than 40,000 people, most of
them successfully, since January 2015.The dialogue between patient organizations and
government officials in drafting the National Plan constitutes a milestone in the challenge of
achieving a greater involvement of public health system users in those decisions affecting
them. However, we are concerned that so far only the therapeutic component (one of four) has
been implemented and no thorough assessment of the first year of implementation of the Plan
has been made public, with experts pointing out the lack of strategic actions in detection and
prevention as its main deficiencies3.
Main challenges to improve care of HCV patients
The top priority would be to attain major reductions in treatment prices, which have been far
too high since its introduction to market. Without cheaper medicines for HCV and other
ailments financial sustainability of Spanish public health system is threatened4.
Besides pricing, we believe that other pressing current challenges are:
-To Detect, diagnose and treat all those people who are HCV carriers and do not know it
yet. There are many, and some in state of advanced fibrosis, but with no obvious symptoms of
the disease. The most effective strategy would be to conduct large-scale screening, with special
focus on populations older than 50 and people who may have been exposed to risk situations.
- To support and sustain approaching population groups in situation of vulnerability or
at risk of social exclusion, especially migrated populations and other at-risk groups at risk such
as people deprived of liberty, sex workers and drug users5.
1 Document prepared by Jaume Vidal and reviewed by ASSCATboard members for a roundtable at the event "TransformingHCV
together"celebrated on April 13, 2015 co-organized by EuropeanLiverPatientsAssociation (ELPA), World HepatitisAlliance
(WHA), InfoHep, World Federation ofScience Journalists(WFSJ) and Deusto Business Schoolwithinthe framework of the
International Liver Congressheld in Barcelonabetweenel 13 y el 17April 2015.
2 See Plan Estratégicoparael Abordaje de la HepatitisC en el Sistema Nacional de Salud. Ministerio de Sanidad, Servicios Sociales e
Igualdad. Secretaría de Sanidad y Consumo. May 2015 accesible at
http://www.msssi.gob.es/ciudadanos/enfLesiones/enfTransmisibles/docs/plan_estrategico_hepatitis_C.pdf
3 A more thoroughanalysisof the National Strategic Planmay be found in BUCHACA, J y HERNANDEZ, J.S ¡Tenemos un
plan!Claves para entenderel PlanEstratégico para el Abordaje de la HepatitisC en el Sistema Nacional de Salud Asscat inForma
No. 22 Abirl 2015pp. 7 -10 Accesible at http://asscat-hepatitis.org/wp-content/uploads/AsscatInforma-N22.pdf
4 On the issue see for instance DE BENITO, E El gasto hospitalario en fármacos sube un26%por la hepatitis C El Pais1 march2016
accesible at http://politica.elpais.com/politica/2016/03/01/actualidad/1456839935_028663.html
5 It is estimated that the number of non-diagnosed patients in Spain would be between 480,000 and 760,000in HepatitisC en
España BRUGUERA, M y FORNS, X Medicina Clínica Vol. 127. Núm. 03. 17Junio 2006 Accesible en http://www.elsevier.es/es-
revista-medicina-clinica-2-articulo-hepatitis-c-espana-13090276

2. -Improve the coordination between services and centers within the public health system
in a comprehensive manner from family doctors to specialists and nurses… enhancing
coordination mechanisms between primary care centers and reference hospitals.
- Facilitate continuous and updated training and education for health personnel, people with
HCV and general public in terms of treatment options and awareness for general population in
connection with prevention.
On the Spanish experience and work that ASSCAT has developed to put and keep the HCV on
the public and policy agenda
In the Spanish context there have been different mobilization efforts by patient organizations to
get access to next-generation drugs using different ways and strategies to achieve largely shared
goals.
In the case of ASSCAT the dialogue with political and health officials was prioritized as method
of pressure together with the dissemination of updated information on conditions and
requirements for access to new treatments for a better understanding of citizen/patient rights6.
In addition, special attention is paid to awareness raising through the dissemination of
informative material on viral hepatitis among the general public; the quarterly journal of the
association(asscat inForma) and a biannual newsletter (asscat inform@) keep ASSCAT
members and interest parties informed about the activities of the organization as well as
developments in the field of new treatments, experiences of those affected...; the presence in
social media (Twitter, Youtube and Facebook) allows for seamless interaction with like-minded
organizations and individuals interested in the issue of Hepatitis (care, treatments ...). After
some time, alliances have been built with local journalists and media outlets.
ASSCAT participates in a number of coalitions at local, national, European and global level
seeking the most fluid relationship between each of the scenarios and every actor involved. This
includes for example the collaboration with the Spanish Red Cross in performing so far, 12
rounds of HCV screening through oral test and information test for hepatitis A, B and C on the
street, in places with high influx of people, with the fundamental objective of informing and
diagnose people with hepatitis; the presence, when it has been required of us in roundtable
discussions with state and regional leaders and other activities within the Federació Catalana de
Voluntariat Social; contributing data and information to the Observatorio de la Hepatitis C and,
abroad, participation of the activities promoted by the European Liver Patients Association
(ELPA) within the framework of empowerment of patient organizations and the socialization of
information from other European countries; and our contribution to the consolidation of a
global movement for the diagnosis, treatment and eradication of hepatitis being part of the
World Hepatitis Alliance (WHA).
Key lesson for other patient organizations
It's important that patient organizations can ensure their independence and
autonomy in executing its own plans and activities. This is a complicated issue, at a
time where financial support, grants and subsidies for the third sector are reduced in
most European countries, but essential for the sustainability and legitimacy of the
organization to diversify its funding sources.
6 An example is the information note “Steps to ask the treatment of Hepatitis C in Catalonia”of March3 rd 2015, a joint initiativ e of
ASSCAT, Creación Positiva, Grupo de Trabajo sobre Tramientodel VIH and Comité 1erDesembre which com piled the m edical
requirements to access new treatments providing contactinformation to reclaim or obtainfurther inform ation. Accessible a t
http://asscat-hepatitis.org/blog/publicaciones/pasos-a-seguir-para-pedir-el-tratam iento-de-la-hepatitis-c-en-catalu na/

3. -Perseverance, determination and resolve are essential to let society know what it
means to have HCV. We must persevere in the tasks of visualization and awareness-
raising and try todo it with rigor and respect for people.
-Beyond the fight against stigma or demands for access to treatment, it is essential to
emphasize that every patient is first of all a citizen and as such organizes with
others to defend their rights.
-Find Coalitions and alliances with other organizations. We consider it critical that
patient associations seek synergies with other social actors such as trade unions,
consumer organizations or non-governmental organizations active in the Harm
Reduction efforts as well as groups representing transplanted patients, co-infected,
dialyzed.. which aslo have a higher prevalence of hepatitis.
-Aim at a greater involvement of medical and scientific societies when engaged
in political lobbying and social advocacy in order to get effective responses from public
institutions with norm setting capacity
- Make human capital the cornerstone of the association is our hallmark.
Members involvement and mutual support have been and are essential in ASSCAT,
which is directed and energized by patients-volunteers or volunteers, outsourcing only
some specific tasks while maintaining ASSCAT own control and strategic guidance.
No one chooses to be patient but everyone can contribute with their
knowledge, experience or simple testimony to the benefit of all.