1. The SOS Infertility Association: Campaign to raise awareness about the problem of infertility in
Romania – “Infertility is a medical condition. Having a child should not be a luxury”
Contest Category: 1. Non-governmental organizations. Civil Society
2. Budget - / Creativity +
Theme
Organization Characteristics
The SOS Infertility Association (SOSI) is the only non-profit organization in Romania to support people
dealing with infertility. Its actions started in 2008, in form of an initiative group and in 2009 it gained legal
personality.
These actions were initiated by a group of people suffering from infertility, some of whom managed to
become parents. We initially met online, then face-to-face in order to manage the activities of the
organization which are developed by charity only, without any external financial support. Together, we
succeeded in drawing attention to the public eye, media and authorities on the fact that infertility is a
disease, but a curable one, and that having a child should not be a luxury.
The SOS Infertility has become a member of the pan-European federation “Fertility Europe” and enjoys
support of professional organizations: European Society of Human Reproduction and Embryology, The
Association of Romanian Embryologists and The Romanian Society of Reproductive Medicine. The
Association has 43 members and 226 confirmed volunteers, to whom we add assisted reproduction
specialist collaborators, hematologists, endocrinologists, psychologists, bioethics and law specialists.
Opportunity of the Campaign
The campaign was intended to answer the problem of infertility in Romania, a serious condition that
affects more and more couples of reproductive age, with multiple social, psychological and medical
consequences. Apart from the frustration people feel as a result of this condition, the Romanian infertile
couples deal with prejudices and stereotypes, the topic of infertility having been some kind of taboo until
recently. The gravity of the phenomenon is emphasized by the fact that the people affected by infertility
don’t have access to medically assisted reproduction procedures or government funded treatments as it
happens in other European countries, even though they contribute to the medical insurance system.
Moreover, Romania faces a huge legislation gap regarding infertility, which led not only to medical
excesses governed by the principle “if it’s not forbidden, it’s allowed”: pregnancy obtained way beyond the
natural reproductive age, triplet or + pregnancies, which endanger the life of mothers and children,
human eggs traffic (see “Sabyc” case). Taking into consideration these actual facts, as opposed to the
complete ignorance of the government structures, the SOS Infertility Association considers that the topic
of “infertility” must be brought up on the public and political agenda and in the mass media as well.
Research
◊ The Resolution of the European Parliament regarding the demographic future of the European Union
2007/2156(INI) states: “infertility is a medical condition recognized by World Health Organization that can
have severe effects such as depression; points out that infertility is on the increase and now occurs in
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2. about 15 % of couples; therefore calls on the Member States to ensure the right of couples to universal
access to infertility treatment.”
◊ European statistics show that one couple out of six has difficulty conceiving and needs medical
assistance.
◊ Studies certify that the psycho-social effects on the ones affected by infertility are compared with the
feelings of cancer patients.
◊ According to a study of our law experts, in the other countries of the European Union there is explicit
legislation regarding medically assisted reproduction, and the costs of the medical procedures are included
in the public health programs – the states finance up to six IVF/ICSI procedures or IUI per couple.
◊ However, Romanian citizens have to pay the full price of medical procedures such as IUI or IVF,
including pre-medical tests and prescribed medication. The costs are huge comparing to the average
income of a Romanian family, the full price of an IVF procedure ranging between 1,500 to 4,400 Euros. An
IUI / IVF procedure is an extremely difficult experience for a couple, both physically and psychologically
which increases in case of a financially insurmountable hindrance.
Planning
Length: 2008-2010
Aims: the public and political stakeholders to take responsibility in the medical, social and psychological
impact infertility has on more than 15% of the population at reproductive age.
Objectives:
◊ Advertise infertility and bring it on the public and political agenda in Romania
◊ Inform infertile couples regarding medical and psycho-social aspects of their condition
◊ Assist and counsel infertile couples
◊ Increase visibility of the SOS Infertility Association
◊ Make authorities and the political class take responsibility for initiating a legislative framework on
assisted reproduction and guaranteeing the right to access infertility treatment and introduction of IUI and
IVF procedures in the national health programs according to European regulations.
Evaluation criteria:
◊ Feed-back from political representatives and the degree to which these will get involved in the creation
of a legal framework on medically assisted reproduction
◊ Number of: publications, people with access to informative materials, volunteers of the campaign,
campaign petition signers
Target audience:
◊ Infertile couples (15% of the population of reproductive age)
◊ The large audience: people aged 18 to 60 from rural and urban areas
◊ Authorities
◊ Mass media
◊ Medical staff in the medically assisted reproduction area
Key message:
Infertility is a medical condition ( not a whim or choice)
Having a child should not be a luxury! ( we are contributors to the health insurance system, we have
the right to seek medical help in order to fight the disease)
Communication
◊ Means of communication: visual, written, oral, electronic
◊ Communication’s channels: television, radio, internet, print, conferences, events, social networks
(Facebook, Twitter, LinkedIn etc.), direct mailing, informative collective blog www.infertilitate.com and
patient forum http://forum.infertilitate.com
◊ Communication support – brochures, banners, e-banners, reports, media portfolios, articles,
presentations, bimonthly newsletter, info flash, press releases, postcards with pictures and messages of
families that overcame infertility.
Both illustrations and promo materials were designed pro bono by the association members and
volunteers.
Implementation
Project Management:
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3. ◊ Establishing project team: building a private digital communication tool to secure the project
management and document storage; writing an electronic script;
◊ Setting up database – MPs, Euro-deputies, media (radio, television, publications, forums, websites),
Romanian NGOs, European non-profit infertility organizations based in Europe, Romanian and European
assisted reproduction clinics, volunteers.
Campaign Description:
Advertising infertility – we have advertised the tragedy of infertile couples and the medical and social
implications of infertility at different events organized by the civil society and at health conferences, on
television, radio and online.
Informing infertile couples and people who are in solidarity with the cause of infertility: we created and we
continuously updated our collective blog, the most complete source of information on infertility in
Romania, with information about assisted reproduction/ conceiving opportunities, conditions, treatment
opportunities, accredited clinics in Romania and abroad, costs, bioethics problems, regulations etc. We
also published “confessions” of infertile couples in order to make healthy people understand what the fight
for infertility means.
Offering assistance and counseling to infertile couples – our patient forum has shortly become a
supportive communication tool used to share experiences of infertile couples, a place of collective
empathy; involving 20 famous specialists – doctors, embryologists, hematologists who collaborate with us
pro bono - numerous couples received answers and advice regarding their medical conditions and
possibilities to overcome the disease.
Institutional development: the association joined the pan-European organization “Fertility Europe” and we
took part in the annual meeting of the members where we had a presentation of the outrageous situation
in Romania in contrast to other European countries: we took part in the annual Congress of the European
Society of Human Reproduction and Embryology where we had a stand to promote messages of hope from
Romanian families that defeated infertility, through postcards with pictures of those families (see “Families
of hope – Rome, 2010” Annex); we intensely sustained the cause of infertility alongside different events
organized by the Romanian civil society (see “Actions” Annex); we developed cooperation with
professional associations of infertility specialists.
National and international advocacy - we addressed complaints to institutions and parliament
commissions; we had meetings with MPs, with representatives of the Ministry of Health, as well as with
Romanian Euro MPs at the European Parliament headquarters. They were all informed about the context
and the aims of the campaign, the worries regarding the absence of legislative framework and the
absence of public policies to support Romanian infertile couples (see “Political support” Annex).
The collective petition initiated within the campaign was sent to numerous institutions: Romanian
Presidency, Romanian Government, Secretariat General of the Government of Romania, social-health
department in the Prime Minister’s Chancellery, Minister of Health, National Health Insurance House,
Minister of Labor, Family and Social Protection, Minister of Youth, commissions of the two chambers of
Parliament.
Evaluation
The results of the campaign show fulfillment of objectives:
Free advertising – “the SOS Infertility” in the media: 11 television appearances on prime time news, 7 TV
documentaries, 7 radio reportages, 17 articles in the national written media and 18 in the local media, 64
articles online (see “Advertising” Annex).
Online communication: Patient forum: > 4500 guests a month, 650 users. Newsletter: bimonthly to 1826
users. Petition: > 5300 signers of the collective petition; collective blog, 44 pages with contributions and
over 185.000 guests, > 12.000 monthly unique visitors.
Online counseling to patients: 20 specialists in human assisted reproduction and connected medical areas
offer medical counseling voluntarily on the association’s forum.
Awards and Participations: winning blog, Roblogfest 2009 & 2010, category “Collective Blog” and finalist
blog, Webstock 2009, category “Brand/Product Blog”. Winning campaign, special prize “Carol Davila”
2009, participant to Civil Society Gala, Health Gala, People for People Gala, Medica Gala, ONGFest.
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4. Political Actions (initiated by Euro MPs as a result of our meetings at the European Parliament): one
resolution proposal to the European Parliament; one question for written answer to the European
Commission; eleven Euro MPs support our campaign (meetings with our volunteers who live abroad at
the European Parliament headquarters).
Law Project regarding medically assisted human reproduction – in progress: under the coordination of the
Health Commission - Deputy Chamber, with the collaboration of the “SOS Infertility” Association and the
associations of fertility doctors.
Creativity
The volunteers to carry on this campaign had to be creative and find cheap solutions due to poor budget
(which was “zero” in 2008, about 300 Euros in 2009) of the association, achieved by donations of our
members. Since infertility is a very “democratic” condition, which does not discriminate, the human
resources of the Association have extremely different profiles and we managed to treasure the expertise
and personal skills of our members, experts in areas such as computers, law, biology, languages,
finances, communication and political science. We have taken advantage of the possibilities offered by the
new technologies and the new media which proved to be a winning bet: minimal costs, significant
impact. We also organized internship within the organization; two students translated the blog into
French and English. The doctors offer free counseling to patients on the forum, their helpful contribution
on a patient forum being a debut in Romania.
With the help of “Infertility is a Medical Condition” campaign, the medical and social reality of infertility
was approached for the first time in Romania. Two years ago there weren’t any answers to our questions
asking politicians to declare infertility a disease, however, there is now a law project in progress. While in
the past infertile couples suffered silently and infertility was taboo, they have now understood that the
solution is direct involvement in order to warn the authorities about the state of normality: conceiving
should not be a luxury!
ANNEXES: “Families of hope – Rome, 2010”, “Actions”, “Advertising”, “Political support”.
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