infertility in brazil

ORIGINAL ARTICLE Infertility

Low priority level for infertility serviceswithin the public health sector:a Brazilian case studyMarıa Y. Makuch1,3, Carlos A. Petta2, Maria Jose Duarte Osis1,and Luis Bahamondes2

1Center for Research in Reproductive Health of Campinas (CEMICAMP), Caixa Postal 6181, 13084-971 Campinas, Brazil 2HumanReproduction Unit, Department of Obstetrics and Gynaecology, Faculty of Medical Sciences, University of Campinas (UNICAMP),and National Institute of Hormones and Women Health, Campinas, Brazil

3Correspondence address. Tel: þ55-19-3289-2856; Fax: þ55-19-3289-2440; E-mail: [email protected]

background: In view of the lack of information on availability of public sector infertility services and in order to contribute to thedebate on access to these services, we assessed the availability of public sector infertility services, including assisted reproduction technology(ART), in Brazil.

materials and methods: We conducted a cross-sectional study with telephone interviews using a semi-structured questionnairewith Health Secretariats’ authorities from the 26 States, the Federal District, 26 Municipal state capitals and another 16 cities with more than500 000 inhabitants. Also, directors of 26 referral centres and teaching hospitals provide ART procedures supported by the state or univer-sity teaching hospitals.

results: Authorities from 24/26 State Secretariats and the Federal District, from 39/42 cities and 26 directors of referral centres andteaching hospitals offering government-funded infertility care and ART were interviewed. In 19/25 states (76%) and 26/39 cities (66.7%), noinfertility treatment was available free of charge. The most common reason for lack of services at the state and municipal levels was ‘lack ofany political decision to implement them’, followed by ‘lack of human and financial resources’. When ART was available, barriers to accessincluded the fact that patients needed to purchase medication and the more than 1-year waiting list for treatment.

conclusions: Lack of political commitment results in inequity in the access of low-income couples in Brazil to infertility treatment,including ART.

Key words: infertility / inequity / low-income population / Brazil / public health

IntroductionAs part of the United Nations (UN) Programme of Action, the inter-national community discussed and agreed to a new, comprehensiveconcept of reproductive health (RH) that included the rights of menand women to choose the number, timing and spacing of their chil-dren, incorporating family planning (FP) programmes, the preventionof reproductive tract infection (RTI) and the prevention and treatmentof infertility (United Nations, 1995). Also, the Millennium Develop-ments Goals of the UN 2000 stated as one of the targets: ‘Achieve,by 2015, universal access to reproductive health’ (United Nations,2000). Brazil was one of the countries that signed both UNdeclarations.

Owing to differences in the definition and methodology of data col-lection, the prevalence of infertility has been calculated as ranging from

4 to 14% worldwide. The international consensus is that 8–10% ofcohabiting couples are infertile, with variations in this percentage inthe different regions of the world (Greenhall and Vessey, 1990;World Health Organization, 1991; Lunenfeld and Van Steirteghem,2004; Larsen, 2005). Recently, an analysis of 25 population surveysestimated the overall prevalence to be 3.5–16.7 and 6.9–9.3% inthe developed and developing countries, respectively (Boivin et al.,2007).

In some developing countries, cohabitation is a common practiceand adolescent pregnancy rates are high. This early age at sexualdebut may be related to a high prevalence of RTI and consequentlyboth the male and the female infertility (World Health Organization,1991; Lunenfeld and Van Steirteghem, 2004; Boivin et al., 2007). Inthese developing countries, parenthood is a culturally importantissue in the life of individuals, and infertile women are often

& The Author 2009. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved.For Permissions, please email: [email protected]

Human Reproduction, Vol.25, No.2 pp. 430–435, 2010

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stigmatized, suffering social consequences that may include beingabandoned by their partners. Consequently, access to the diagnosisand treatment of infertility, including the provision of drugs and pro-cedures and assisted reproduction technology (ART), contributestowards resolving social inequities for a large proportion of thepopulation.

According to the Brazilian Constitution, current legislation withinthe National Health System, known in Brazil by the acronym SUS(Sistema Unificado de Saude or Unified Health System), and an admin-istrative decree issued by the Ministry of Health, all citizens have theright to health care and the government is obliged to provide for allhealth-related requirements, including infertility services (RepublicaFederativa do Brasil, 1988; Brasil, 2005). Brazil has almost 190million inhabitants, around 140 million of whom belong to socioeco-nomic strata ‘D’ and ‘E’ and depend on SUS health care (Santoset al., 2008; IBGE, 2009). Over recent decades the country hasmade an effort to achieve some of its RH goals, mainly those concern-ing FP. An example of this effort is the fact that prevalence of contra-ceptive use is now 76.7%, while the unmet need is only 7.3% and thetotal fertility rate is around 1.89 (United Nations, 2008).

However with respect to the availability of infertility services and accessfor the less privileged to infertility treatment, including ART, the situationis different. If we take into account that the estimated global need for ARTprocedures (including intrauterine insemination [IUI], IVF and ICSI) is1500 cycles per million persons/year (Collins, 2001); this equates to ahigh number required annually only for the underprivileged in Brazil. Inview of the lack of available information and as a means of contributingtowards the debate on access to infertility services (Berkowitz King andDavies, 2006; Nachtigall, 2006), the objective of this study was toassess the availability of infertility treatment, including ART services,within the public healthcare network in Brazil.

Materials and MethodsThis descriptive cross-sectional study was conducted by the Centre forReproductive Health of Campinas (Cemicamp), Brazil. The protocol wasapproved by the Ethical Committee of the Faculty of Medical Sciences,University of Campinas (UNICAMP), Campinas, Brazil. The study wascarried out between June 2008 and June 2009.

Brazil is organized in 26 states, the capital of the country is the FederalDistrict and all the states are divided into municipalities. Telephone inter-views were used for data collection. In the first phase of the study, all the26 State Health Secretariats and the Department of Health of the FederalDistrict, as well as all the 26 Municipal Health Secretariats of the state capi-tals and of 16 other cities with at least 500 000 inhabitants were contactedand a telephone interview was scheduled with the Director of theWomen’s Health Division or another designated person. In the secondphase of the study, 23 medical directors of referral centres for infertilityservices and 12 directors of university infertility services offering ART pro-cedures, mentioned by the state and municipal health authorities duringtheir interviews, were contacted and telephone interviews scheduled.

For the interviews, structured pre-tested questionnaires were devel-oped. The main aim of the questionnaires for authorities (State andMunicipal Health Secretariats) was to gather information regarding thenumber of services that provided infertility care (including those providingART procedures), how long these services had existed and the kind ofservice they provided, the reasons for the lack of these services andplans for the implementation of infertility services, including ART, in the12 months following the interview. The questionnaire had pre-coded

categories and for open-ended questions the answers were coded(questionnaires available at: www.cemicamp.org.br).

In the case of referral services for infertility and university teachinghospital services that provided ART procedures, the questions concernedwhich ART procedures were offered and access to these services (referralsystem, waiting time and costs). Prior to initiating the interview, aninformed consent form was read to all participants and their verbalconsent was recorded. All the telephone interviews were conducted bya trained interviewer, who filled out the interview form and simultaneouslythis information was tape recorded. This allowed checking the writteninformation against the recording to assure quality.

ResultsInterviews were conducted with 24 of the 26 authorities from theState Health Secretariats and authorities from the Federal District.The remaining two refused to participate in the study. In addition,39 of the 42 authorities from the Municipal Health Secretariats wereinterviewed, 25 from the state capitals and 14 from other cities withmore than 500 000 inhabitants. In the second phase of the study,26 directors of the referral centres for infertility mentioned by thehealth authorities, including those offering government-funded ARTprocedures, participated in the telephone interview, 18 from centressupported by the state and 8 from centres located in the teaching hos-pitals (Fig. 1).

At the state level, 19 of the 25 authorities (76%) reported that noinfertility services were available in their state (Table I). At the municipallevel, this figure was fairly similar with 26 of the 39 authorities (66.7%)reporting that their municipality provided no government-funded

Figure 1 Summary of authorities contacted and interviews con-ducted in order to assess the availability of public sector infertility ser-vices in Brazil.

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infertility services free of charge to the population. The most commonreason given for the lack of services both by the state and municipal’authorities was ‘a lack of any political decision to implement them’, fol-lowed by ‘a lack of human and financial resources’ (Table I).

Among the states and municipalities in which infertility serviceswere available free of charge, only 4/6 and 8/13, respectively, hadimplemented any algorithms or norms for infertility work-up and treat-ment. At the state level, authorities reported seven services that pro-vided ART procedures and these services were located in only fourdifferent states. Authorities from 17 states reported that no planshad been made to implement either infertility services or ART pro-cedures in the 12 months following the interview. The mostcommon reason given was ‘a lack of any political decision to do so’(data not shown). At the municipal level, authorities reported onlyone service that provided ART procedures (only IUI), while 35 ofthe 39 of those interviewed reported that no plans had been madeto implement either infertility services or ART procedures in the12 months following the interview (Table I).

State and municipal authorities stated that couples requiring inferti-lity care or ART procedures were referred to centres specialized inwomen’s health care or to the teaching hospitals of universitieslocated in the city, near the city or in the state capitals. A total of35 referral centres were mentioned by the policy-makers. We wereable to interview only 26 of the directors or coordinators of thesecentres supported by the states or located within universities, sincethe others refused to participate in the study. The interviewsshowed that of the 18 centres at the state level, only 7 provided infer-tility care, while 5 centres provided ART procedures including IUI, IVFand ICSI. Only two centres received partial support from the munici-pality; however, in all of these cases the patients had to acquire thedrugs, the costs of which are estimated at almost US$2000 percycle for IVF or ICSI procedures.

All eight coordinators of the services situated within universityteaching hospitals that offered both infertility care and ART pro-cedures stated that the patients themselves need to acquire the

medication, that the waiting lists are more than a year long and thatcouples were formally referred by primary health clinics. They alsosaid that some parts of the ART procedures were performed usinggovernment funding, albeit under alternative diagnostic codes (Jonesand Allen, 2009) such as hormone measurements, ultrasound scansor ovum retrieval, performed using codes existing for other gynaeco-logical complaints and human resources, which were funded by theinstitution.

DiscussionThese results show that the access of low-income, infertile Braziliancouples to the diagnosis and treatment of infertility including ART pro-cedures in public health facilities is limited. The access is almost exclu-sively limited to a few public healthcare centres supported by the stateand municipal health departments and teaching hospitals maintainedby the federal or state universities to which primary public servicesor low-complexity secondary public services refer these couples. Inaddition, ART procedures are available at some university centres,most of them concentrated in the south of the country. The magni-tude of the problem comes to light when taking into account thatthere are almost 47 million women of reproductive age (15–49years of age) in Brazil, hence around four million infertile couples(Santos et al., 2008; IBGE, 2009).

One of the most important and neglected aspects of RH in devel-oping countries is infertility. Although no statistics are available in Brazilon the exact prevalence of infertility, it is presumed that the inter-national prevalence rate would be applicable (Larsen, 2005; Boivinet al., 2007). This neglected aspect of RH is reflected in the presentfindings that 76% of the states and 66.7% of the municipal health sec-retariats interviewed reported that they did not provide infertility ser-vices and no ART procedures of 84 and 97% at the state andmunicipal levels, respectively. When available, only IUI, and not IVFor ICSI, is offered.

In contrast, 56 clinics were registered in the private sector(REDLARA, 2006). In an international survey and the last report forthe year 2006 of the Latin American Network of ART (REDLARA,2006; International Committee for Monitoring Assisted ReproductiveTechnology et al., 2009), there were estimates of 12 218 or 13 485cycles, respectively, in Brazil, representing almost 45% of the LatinAmerican procedures with an estimated cost of US$6000 per cycle.Despite the fact that women’s movements have been strong advo-cates for RH rights, less effort has been dedicated to the inequity ofinfertility services. Also, we believe that the inequity is not relatedto opposition of the Catholic Church to ART procedures becausethey did not express publicly restrictions.

Recently, the Ministers of Foreign Affairs of several countries,including Brazil, recognized health as an important issue and empha-sized the need for integration of health services and RH as importantconcerns (Oslo Ministerial Declaration, 2007). However, the mostcommon reason observed in our study for both the absence of infer-tility services and the lack of any plans to implement such services inthe near future was ‘absence of any political decision’.

The fact that in the services that do provide ART procedures thecost of the medication is charged to the patients also represents aform of inequity. This is a barrier for almost all low-income couplesbecause the cost of the drugs is almost twice the monthly income

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Table I Availability of infertility services in Brazil andreasons for lack of services

At statelevel (25)

At municipallevel (39)

n % n %

Number of infertility services 19 76.0 26 66.7

Number of ART services 21 84.0 38 97.0

Number of plans for implementingeither infertility or ART serviceswithin the following 12 months

17 68.0 35 89.9

Reasons for the lack of services*

Absence of any political decision 17 18

Lack of human resources 9 3

Lack of resources 5 12

Lack of interest from the services 4 6

ART, assisted reproduction technology.*The policy-makers were permitted to give more than one answer.

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of families in social strata ‘D’ and ‘E’ (IBGE, 2009). In addition, themore than 1 year of waiting time for consultation at services offeringART procedures poses another problem, since many of these womenmay be over 35 years of age at the time of the procedure, therebyreducing their chances of success (Daar and Merali, 2002; Dyeret al., 2002). However, there is the possibility of performing ARTmore cheaply in the future (e.g. using low-cost hormone stimulationprotocols, low-cost laboratory techniques), thereby making it moreaffordable for patients, and recent initiatives are in agreement withthis solution (Ombelet and Campo, 2007; Frydman and Ranoux,2008).

In many societies, infertility is considered a tragedy with conse-quences for the entire family as well as negative psychosocial repercus-sions (Daar and Merali, 2002; Dyer et al., 2002; Dyer, 2007). It is seenas a disease or disability that affects only the women, thereby stigma-tizing women who cannot conceive a child and often resulting indevastating consequences that may include neglect or domestic vio-lence (Van Balen and Gerrits, 2001; Van Balen, 2002; Widge, 2002;Araoye, 2003). The urgent need for many women to resolve theirchildlessness is a situation that increases the demand from poorcouples in developing countries for infertility treatment (Van Balenand Gerrits, 2001).

The availability of services and provision of infertility treatment is acomplex issue in developing countries as a consequence of the manyconcerns and barriers erected by policy-makers, medical associationsand society itself (Dyer et al., 2002; Fathalla, 2002; Dyer, 2007)considering that poverty remains an issue in these countries. Theexistence of other urgent and emerging problems, such as the highrates of maternal morbidity and mortality, unmet needs in FP,vaccination programs, infectious diseases such as malaria, dengueand yellow fever, RTI and the provision of drugs for the treatmentof individuals living with human immunodeficiency virus and acquiredimmunodeficiency syndrome, strongly contributes to this state ofaffairs. Brazil is no exception in this scenario.

In the case of ART procedures the situation is even more complexbecause many policy-makers do not want to divert limited resources,human resources and facilities to expensive fertility services thatwill eventually result in low pregnancy rates (Chambers et al.,2009; Gunby et al., 2009; Hammoud et al., 2009). Consequently,infertility services have received little attention (Hamberger andJanson, 1997).

The prevalence of male and female RTI, and the infertility whichmay consequently occur, is high in developing countries (WorldHealth Organization, 1987; Nachtigall, 2006) and the best way toreduce the incidence is through prevention and RH education, animportant task for governments; however, this represents achallenge (Makuch et al., 2000). Furthermore, the prevalence oftubal sterilization in Brazil is high, which in turn results in anundetermined number of women requesting reversal (Hardy et al.,1996), a situation that can generally only be resolved using ARTprocedures. The fact that women in Brazil do not have access tosafe or legal abortion is another factor that cannot be ignoredbecause the number of complications may constitute anothercause of infertility (World Health Organization, 2004; Grimeset al., 2006).

The treatment of infertility in low-resource settings is a challenge;however, it is a human right of all individuals to find a family. The

poorest sectors of the populations of developing countries are prob-ably those more prone to infertility because of poor education,poverty, early sexual debut and unsafe abortion, among otherfactors (Ombelet et al., 2008), and probably they are the populationmost in need of ART (Blackwell et al., 2001; Luna, 2002; Filetto andMakuch, 2005).

Governments of developing countries need to give society theopportunity to debate these issues if they are to comply with theUN declaration on RH (United Nations, 1995). Fewer than halfthe existing services had implemented infertility algorithms ornorms, despite the fact that the UN declaration states that elaboratenorms with algorithms are required that should simplify the diagnosticand therapeutic procedures to avoid unnecessary spending of valuableresources on old technologies or allocating funds to centres with notrained personnel or an inadequate infrastructure (Blackwell et al.,2001). In addition, it states that infertility services can be acceptably,affordably and appropriately provided if firmly grounded in infertilityalgorithms (Blackwell et al., 2000, 2001). Recently Ombelet andCampo, (2008) provided many examples that may help policy-makersand other stakeholders reflect on the best way to offer solutions tomillions of couples based on an ethical principle of reproductiveautonomy.

The first decade of the 21st century is almost at an end and govern-ments can no longer ignore the new concept of RH to which they puttheir signature, nor can they deny that infertility is a legitimate medicalproblem. Better care means eliminating inequity, reducing costs byavoiding the inappropriate expenditure of funds, avoiding malpracticeand implementing means of achieving better patient outcomes(Jones and Allen, 2009).

Finally, our findings reveal inequity in access to infertility services,including ART procedures, for low-income couples, reflecting poorpolitical commitment with respect to this kind of health care inBrazil (Hardy and Makuch, 2002). The World Health Organizationmade several recommendations with respect to infertility in develop-ing countries (Vayena et al., 2002), and the recent review on infertilityin developing countries (Ombelet and Campo, 2008) as well as thediscussion on inequities in infertility access in the USA (BerkowitzKing and Davies, 2006; Nachtigall, 2006) lead us to believe moststrongly that now is the time to cross the boundary from talkingand writing to acting (Fathalla et al., 2006). We hope that this studymay contribute to the debate and encourage investigators fromother countries to examine similar issues, thereby ensuring that gov-ernments are made fully aware that infertility is one of importantissues in RH, although still neglected.

FundingThis study was partially supported by the Fundacao de Amparo aPesquisa do Estado de Sao Paulo (FAPESP), award no. 07/00055-9and the Conselho Nacional de Pesquisa (CNPq), Brazil under awardno. 573747/2008-3.

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Submitted on August 24, 2009; resubmitted on October 19, 2009; accepted onOctober 23, 2009




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