English campaign sosi_pr_award_2010


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English campaign sosi_pr_award_2010

  1. 1. The SOS Infertility Association: Campaign to raise awareness about the problem of infertility inRomania – “Infertility is a medical condition. Having a child should not be a luxury”Contest Category: 1. Non-governmental organizations. Civil Society 2. Budget - / Creativity +ThemeOrganization CharacteristicsThe SOS Infertility Association (SOSI) is the only non-profit organization in Romania to support peopledealing with infertility. Its actions started in 2008, in form of an initiative group and in 2009 it gained legalpersonality.These actions were initiated by a group of people suffering from infertility, some of whom managed tobecome parents. We initially met online, then face-to-face in order to manage the activities of theorganization which are developed by charity only, without any external financial support. Together, wesucceeded in drawing attention to the public eye, media and authorities on the fact that infertility is adisease, 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 enjoyssupport of professional organizations: European Society of Human Reproduction and Embryology, TheAssociation of Romanian Embryologists and The Romanian Society of Reproductive Medicine. TheAssociation has 43 members and 226 confirmed volunteers, to whom we add assisted reproductionspecialist collaborators, hematologists, endocrinologists, psychologists, bioethics and law specialists.Opportunity of the CampaignThe campaign was intended to answer the problem of infertility in Romania, a serious condition thataffects more and more couples of reproductive age, with multiple social, psychological and medicalconsequences. Apart from the frustration people feel as a result of this condition, the Romanian infertilecouples deal with prejudices and stereotypes, the topic of infertility having been some kind of taboo untilrecently. The gravity of the phenomenon is emphasized by the fact that the people affected by infertilitydon’t have access to medically assisted reproduction procedures or government funded treatments as ithappens 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 medicalexcesses governed by the principle “if it’s not forbidden, it’s allowed”: pregnancy obtained way beyond thenatural 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 thecomplete ignorance of the government structures, the SOS Infertility Association considers that the topicof “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 Union2007/2156(INI) states: “infertility is a medical condition recognized by World Health Organization that canhave severe effects such as depression; points out that infertility is on the increase and now occurs in 1
  2. 2. about 15 % of couples; therefore calls on the Member States to ensure the right of couples to universalaccess to infertility treatment.”◊ European statistics show that one couple out of six has difficulty conceiving and needs medicalassistance.◊ Studies certify that the psycho-social effects on the ones affected by infertility are compared with thefeelings of cancer patients.◊ According to a study of our law experts, in the other countries of the European Union there is explicitlegislation regarding medically assisted reproduction, and the costs of the medical procedures are includedin 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 averageincome of a Romanian family, the full price of an IVF procedure ranging between 1,500 to 4,400 Euros. AnIUI / IVF procedure is an extremely difficult experience for a couple, both physically and psychologicallywhich increases in case of a financially insurmountable hindrance. PlanningLength: 2008-2010Aims: the public and political stakeholders to take responsibility in the medical, social and psychologicalimpact 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 onassisted reproduction and guaranteeing the right to access infertility treatment and introduction of IUI andIVF 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 creationof a legal framework on medically assisted reproduction◊ Number of: publications, people with access to informative materials, volunteers of the campaign,campaign petition signersTarget 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 areaKey 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 havethe 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 andpatient 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 offamilies that overcame infertility.Both illustrations and promo materials were designed pro bono by the association members andvolunteers.ImplementationProject Management: 2
  3. 3. ◊ Establishing project team: building a private digital communication tool to secure the projectmanagement 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 Europeanassisted reproduction clinics, volunteers.Campaign Description:Advertising infertility – we have advertised the tragedy of infertile couples and the medical and socialimplications of infertility at different events organized by the civil society and at health conferences, ontelevision, radio and online.Informing infertile couples and people who are in solidarity with the cause of infertility: we created and wecontinuously updated our collective blog, the most complete source of information on infertility inRomania, with information about assisted reproduction/ conceiving opportunities, conditions, treatmentopportunities, accredited clinics in Romania and abroad, costs, bioethics problems, regulations etc. Wealso published “confessions” of infertile couples in order to make healthy people understand what the fightfor infertility means.Offering assistance and counseling to infertile couples – our patient forum has shortly become asupportive communication tool used to share experiences of infertile couples, a place of collectiveempathy; involving 20 famous specialists – doctors, embryologists, hematologists who collaborate with uspro bono - numerous couples received answers and advice regarding their medical conditions andpossibilities to overcome the disease.Institutional development: the association joined the pan-European organization “Fertility Europe” and wetook part in the annual meeting of the members where we had a presentation of the outrageous situationin Romania in contrast to other European countries: we took part in the annual Congress of the EuropeanSociety of Human Reproduction and Embryology where we had a stand to promote messages of hope fromRomanian families that defeated infertility, through postcards with pictures of those families (see “Familiesof hope – Rome, 2010” Annex); we intensely sustained the cause of infertility alongside different eventsorganized by the Romanian civil society (see “Actions” Annex); we developed cooperation withprofessional associations of infertility specialists.National and international advocacy - we addressed complaints to institutions and parliamentcommissions; we had meetings with MPs, with representatives of the Ministry of Health, as well as withRomanian Euro MPs at the European Parliament headquarters. They were all informed about the contextand the aims of the campaign, the worries regarding the absence of legislative framework and theabsence of public policies to support Romanian infertile couples (see “Political support” Annex).The collective petition initiated within the campaign was sent to numerous institutions: RomanianPresidency, Romanian Government, Secretariat General of the Government of Romania, social-healthdepartment 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 ofParliament.EvaluationThe results of the campaign show fulfillment of objectives:Free advertising – “the SOS Infertility” in the media: 11 television appearances on prime time news, 7 TVdocumentaries, 7 radio reportages, 17 articles in the national written media and 18 in the local media, 64articles online (see “Advertising” Annex).Online communication: Patient forum: > 4500 guests a month, 650 users. Newsletter: bimonthly to 1826users. Petition: > 5300 signers of the collective petition; collective blog, 44 pages with contributions andover 185.000 guests, > 12.000 monthly unique visitors.Online counseling to patients: 20 specialists in human assisted reproduction and connected medical areasoffer medical counseling voluntarily on the association’s forum.Awards and Participations: winning blog, Roblogfest 2009 & 2010, category “Collective Blog” and finalistblog, 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. 3
  4. 4. Political Actions (initiated by Euro MPs as a result of our meetings at the European Parliament): oneresolution proposal to the European Parliament; one question for written answer to the EuropeanCommission; eleven Euro MPs support our campaign (meetings with our volunteers who live abroad atthe European Parliament headquarters).Law Project regarding medically assisted human reproduction – in progress: under the coordination of theHealth Commission - Deputy Chamber, with the collaboration of the “SOS Infertility” Association and theassociations of fertility doctors.CreativityThe 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 ourmembers. Since infertility is a very “democratic” condition, which does not discriminate, the humanresources of the Association have extremely different profiles and we managed to treasure the expertiseand 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 thenew technologies and the new media which proved to be a winning bet: minimal costs, significantimpact. We also organized internship within the organization; two students translated the blog intoFrench and English. The doctors offer free counseling to patients on the forum, their helpful contributionon a patient forum being a debut in Romania.With the help of “Infertility is a Medical Condition” campaign, the medical and social reality of infertilitywas approached for the first time in Romania. Two years ago there weren’t any answers to our questionsasking politicians to declare infertility a disease, however, there is now a law project in progress. While inthe past infertile couples suffered silently and infertility was taboo, they have now understood that thesolution is direct involvement in order to warn the authorities about the state of normality: conceivingshould not be a luxury!ANNEXES: “Families of hope – Rome, 2010”, “Actions”, “Advertising”, “Political support”. 4