This article appears in the following ESHRE Monographs issue: ESHRE Special Task Force on 'Developing Countries and Infertility' [View the issue table of contents]
Patients' voice
Joyce Fertility Support Centre Uganda (JFSCU), 32 Windsor Crescent off Babiiha Avenue, Next Athina Club, PO Box 28095, Kampala, Uganda
* Correspondence address. Tel: +256-41-345-366/+256-774-100-873; E-mail: joycefertility{at}hotmail.com/sembuyar{at}yahoo.com
International declarations have already endorsed the importance of a family. Different international organizations recognized the right of everyone to enjoy the benefits of scientific progress and its applications, and the right of everyone to enjoy the highest standard of physical and mental health.
In African Traditional Society, if a woman does not give birth, she is considered as if she has not existed. Her family line internally disowns her in that she does not participate in practices that promote continuity.
A woman or a man who fails to go through the biological process of reproducing offspring loses a complete life and her/his community regards her or him as incomplete. When Rachael failed to get children, she said unto her husband Jacob, ‘Give me children or else, I die’.
In case of developing countries, specifically sub-Saharan Africa, the situation is exacerbated by the already existing burden on the health of the population. The priority focuses on what is regarded as catastrophic; Malaria, HIV/AIDS, maternal mortality and infant mortality are the major concerns for the country's budgets.
In the existing health systems, there exist no drive for documentation or any demand for studies leading to the plan of action for the management of infertility. Most of the researches are directed towards fertility and population, mainly investigating demographic indications on reducing and maintaining of population. Reproductive programs in developing countries have channeled their focus to HIV/AIDS, malaria and family planning, neglecting infertility completely. The World Health Organization (WHO) also published many reports on Assisted Reproduction and Infertility, however, no actions have been undertaken.
Subsequently, the need for organized institutions for patients comes into existence with the different countries coming on board. The key issues are affordability, accessibility and quality. The target groups are governments, medical community, industry, media and the general society. Although identification of the problem is most important in sub-Saharan Africa, there is almost no documentation on infertility prevalence.
There is a significant need for a research to profile the real prevalence of infertility in developing countries and an action plan adopted in the health structure of countries, i.e. coordinating all stakeholders. Patient organizations in developing countries have emerged to address the above problems.
Five-patient organizations were founded between 1996 and 2006 in Uganda, Kenya, Zimbabwe, Israel and Argentina. The main objectives were the following:
- Building partnerships with reproductive programs, health providers, other non-profit organizations, politicians, traditional healers and religious leaders.
- Addressing gender based violence, domestic based violence, financial insecurity on the side of women, and cultural barriers.
- Supporting education to public including medical practitioners, scientists and politicians to understand patients' roles and perspectives.
- Increasing awareness in the media to inform communities about infertility.
Challenging issues are the findings that infertility is a neglected disease, the high costs of treatment and insurance companies not interested, restrictive laws that make ART difficult to be accessible and governments' budgeting in developing countries which eludes important views of the communities. Some churches also strongly oppose ART.
Patients' organizations opened infertility awareness that was not addressed in any of the reproductive health programs of countries. Independent views of patients are voiced through their organizations. Patients organizations are patient led, they are not affiliated to any hospitals hence their ability to voice independent views.
The long-term goals are self-sustainability, to establish centers of excellence for education, counseling and research, to obtain fair-legislative laws on ART to allow accessibility and to develop networks taking into account the problem of language barriers with respect for cultures of different communities
To conclude, as patients advocates we need to start with documentation of prevalence as a tool to lobby for the funding of infertility treatment as one of our reproductive rights.
The role of the patients in the management of infertility comes as an important call for all stakeholders in healthcare delivery of countries. The key targets for patients' voices are the governments, the medical and scientific community, the media and the public.
Between 1980s and 2000, patients organized critical masses of advocate groups to address the problem of infertility and insert their voices in public policy and management of infertility. The present challenges in the health delivery systems of developing countries are the structure from top-down criteria, which creates major gaps between the providers and the final beneficiaries of the services.
There is a strong need to incorporate patients' views and perspectives in discussions and major decisions in all matters pertaining to healthcare service for infertility.
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 Top Acknowledgements |
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We would like to acknowledge the following people in the contribution of this article: Prof. Willem Ombelet-Editorial, Genk University Belgium; Sandra K Dill AM-Supervisor, International Consumer Support for Infertility. Patient leaders: Ofra Balaban, Chen Fertility Patient Association Israel; Evelyn Madziba, The Fertility Network of Zimbabwe; Sarah Muthanje Ndwiga, Hope Fertility Support Centre Kenya; Estela Chardon, Concebir Argentina.
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