Makuch

Barriers to access to infertility Barriers to access to infertility care and assisted reproductive care and assisted reproductive

technology within the public technology within the public health sector in Brazilhealth sector in Brazil

Maria Y Makuch Maria Y Makuch

Centre for Research in Reproductive Health of Campinas – Cemicamp Centre for Research in Reproductive Health of Campinas – Cemicamp Faculty of Medicine, State University of Campinas – UNICAMP Faculty of Medicine, State University of Campinas – UNICAMP

Campinas, SP, Brazil Campinas, SP, Brazil

BackgroundBackground More than 30 years since the first in vitro fertilization (IVF)

Infertility treatment including ART is still inaccessible for many men and women in low-resource settings

Parenthood is an important life project for most men and women

Childless is a major life problem associated with strong psychological consequences

Infertile men, and women in particular, are often stigmatized

Greil,1997; Brkovich and Fisher, 1998; Makuch, 2001; van Balen and Inhorn, 2002;Greil,1997; Brkovich and Fisher, 1998; Makuch, 2001; van Balen and Inhorn, 2002;Ombelet et al., 2008; Inhorn, 2009; van Balen and Bos, 2009 Dhont et al., 2011Ombelet et al., 2008; Inhorn, 2009; van Balen and Bos, 2009 Dhont et al., 2011

Brazil Public Health System (Public Health System (Sistema Único de SaúdeSistema Único de Saúde - SUS) - SUS)

Health care is a “right for all and a state obligation” Health care is a “right for all and a state obligation”

guaranteed by the Constitution guaranteed by the Constitution

140 out of 193 million inhabitants depend on SUS 140 out of 193 million inhabitants depend on SUS

Policy for care in Reproductive Health Policy for care in Reproductive Health

Not many actions referred to health care in infertility and Not many actions referred to health care in infertility and ARTART

Access to infertility care is restricted Access to ART is almost inexistent

BackgroundBackground

International Conference on Population and Development (ICPD)

Brazil adopted the Programme of Action

A comprehensive concept of RH including the prevention and treatment of infertility

UN Millennium Development Goals

One of the targets was ‘to achieve, by 2015 of the “universal access to reproductive health”

United Nations, 1995, 2000United Nations, 1995, 2000

BackgroundBackground

Objective Objective

The main objective of this report was to assess

barriers to the access to infertility care and to ART

within the public health sector in Brazil.

MethodMethod

Study design

Quantitative – cross-sectional study Qualitative – case studies

Approved by the IRB of the University of Campinas and by all the institutions in which the participating centres were located.

All participants signed an informed consent form.

Descriptive cross-sectional study Descriptive cross-sectional study

Telephone interviews

Health authorities state level Health authorities municipal level

Structured questionnaire Existing service Time of existence Infertility care provided Reasons for lack of services Plans for implementation

Percentage of interviews with municipal Percentage of interviews with municipal policymakers according to region - first phasepolicymakers according to region - first phase

16.7%

26%

42.9%

7.1%

7.1%

Authorities contacted and interviews conducted Authorities contacted and interviews conducted to assess the availability of public sector to assess the availability of public sector

infertility services in Brazilinfertility services in Brazil

Makuch MY et al. Hum Reprod 2010;25:430-435Makuch MY et al. Hum Reprod 2010;25:430-435

Variables States Municipal

Infertility services

Yes 8 16

No 17 23

Total 2525 3939

Reasons for not having infertility services

Lack of political decision Lack of political decision 13 10

Lack of resources Lack of resources 9 3

No services interested in implementingNo services interested in implementing 4 6

Issue not discussed at Health SecretariatIssue not discussed at Health Secretariat 4 6

There is no protocol There is no protocol 3 2

There is no demand There is no demand 2 3

No plans to implement services in the No plans to implement services in the next 12 monthsnext 12 months 17 35

Reasons for the lack of availability of infertility Reasons for the lack of availability of infertility services at state, federal district and municipal services at state, federal district and municipal

levellevel

Variables State (N=26) Municipal (39)

Type of services Type of services Referral centers for women’s health 88 7

Specific services for infertility 2 3

Basic Health Post 1010

Other 1 1

Level of complexity Level of complexity

Primary (basic attention) 2 99

Secondary (middle complexity) 66 7

Tertiary (high complexity) 5 1

Type of services and level of complexity of Type of services and level of complexity of available infertility services at state and available infertility services at state and

municipal levelmunicipal level

Variables State/FD Municipal

Services that offer ART procedures

None 3 15

One service 3 1

Four services 1

Does not know 1

Total 8 16

Infertility services that offer art procedures Infertility services that offer art procedures atat state, federal district and municipal levelstate, federal district and municipal level

Variables n

Assistance in infertilityAssistance in infertility Not treated/referred 1

Referred to another municipality 3

Referred to state service 1111

Referred to university service 1010

Other 3

TotalTotal 2323

Assistance in ART Assistance in ART Does not know 2

Not assisted/referred 2

Referred to state service 55

Referred to university service 77

Other 1

TotalTotal 1515

Infertility care and art procedures at Infertility care and art procedures at municipal health level when these municipal health level when these

services are not part of the system services are not part of the system

Main barriers identifiedMain barriers identified SUS has established that infertility care should be responsibility of

primary health services

Referral mechanisms are not established within the system

There is lack of capacity within primary health network for complex infertility care Technical capacity and infrastructure Professional training and allocation

Most of the services had no guidelines for infertility care Health authorities are not clear as to who is responsible for the

development of guidelines

Qualitative case studiesQualitative case studies

Following the criteria for purposeful sampling

Five centres performing ART at public institutions

Semi-structured interviews

Coordinator of the centre Health professionals Patients (men and women)

Patton, 2002; Turato, 2003Patton, 2002; Turato, 2003

MethodMethodInterview guides

Common topics related to patients’ access to the centres and to ART procedures, including scheduling procedures, waiting times and payment for ART

Specific topics

Coordinators of the centres: issues related to resources, how and when these procedures started to be offered, relationship between these centres and the public health care system

Health professionals: service activities

Patients: experience with ART procedures

Participants

19 healthcare professionals: 12 physicians, 4 nurses, 1 social worker, 2 psychologists

28 women and 20 men

Interviews

Recorded transcribed verbatim checked against the recordings

Transcripts were organized

According to units of significance Thematic content analysis

MethodMethod

The services visited

Services initiated their activities at the beginning of the 1990s

Service located at a state hospital

Funding from the State Health Department

ART at no cost for patients

Four services located at public university teaching hospitals

Utilized existing resources

Partial financial support from the university to adapt the facilities to comply with requirements for ART

Patients needed to pay for the procedure

Barriers - Access to ART procedures

Scheduling procedures

Healthcare professionals and patients

Two patterns for a consultation to initiate ART

through the public health system

directly at the ART service

”She went to the service and was referred by the public health unit nearest our house and then when she got home she said to me: ‘The only problem is that it’s going to be a long process”. Man, no children, south region

Waiting time

Healthcare professionals and patients

number of new consultations per month or per cycle of ART varied from some months to some years

Centre no cost for patients = waiting time for IVF and ICSI up to 5 years 400 coupes on the waiting list, an average of two couples per month

initiated treatment

”That was it, when all the tests were ready, I had to wait for four years, it’ll be five years now ... I am still waiting”. Woman, no children, southeast region

‘All the couples are listed in a book, and these patients, after they get into the

book, we actually had to stop including names because we already had over 400 patients listed and we knew we would not be able to cope with that amount’. Health professional, northeast regionHealth professional, northeast region


Costs

Professionals and patients

costs of US$2,000/ 3,000 per IVF/ICSI cycle for the medication (50% of the population earns US$220 per month)

additional fee was added social criteria to exempt from paying

“We sold a truck that we had and used some of the money to buy the medication”. Woman, no children, southeast region


Costs

Professionals

estimated that slightly over half of those who reached the service actually received treatment

“. . . I would say that around 60% of the patients end up having the treatment, for the remaining we have a waiting list that we refer to as the ‘unable to pay’ list . . . We treat one couple from this list free of charge .. Yes one or two for every 10 procedures”. Health professional, central region


Final Comments There is lack of political commitment and official policy

regarding infertility services in the public health sector in Brazil

ART is almost not available at no cost to patients in the public health sector

Part of the demand for ART is provided by university services; however, with costs for patients

There is inequity in access to infertility services and ART procedures for low-income couples

It is possible to take initiatives to make ART available to

the less privileged sector of the society, by organizing existing resources

The visited centres did not meet the needs of the most

under-privileged segments

It is possible to take initiatives to make ART available

to the less privileged sector of the society, by

organizing existing resources

Final Comments

All the participants for sharing their experiences, particularly men and

women patients of the ART services visited

The research team

Fundação de Amparo a Pesquisa do Estado de São Paulo (FAPESP)

award # 07/00055–9

Conselho Nacional de Pesquisa (CNPq), Brazil

award # 573747/2008–3

[email protected]

Acknowledgments

Documents

Makuch