RITA SEMBUYA

Uganda,

Focusing first on infertility, an unaddressed and complex problem in much of Africa, Rita Sembuya is helping citizens to voice their concerns in discussions of how, what, and to whom healthcare services are made available.

This profile below was prepared when Rita Sembuya was elected to the Ashoka Fellowship in 2003.

INTRODUCTION

Focusing first on infertility, an unaddressed and complex problem in much of Africa, Rita Sembuya is helping citizens to voice their concerns in discussions of how, what, and to whom healthcare services are made available.




THE NEW IDEA

In Uganda, as many as 30 percent of child-bearing-aged couples have difficulty conceiving a child; infertility is a huge problem, often devastating couples. Rita sees that her efforts both to educate and connect affected men and women in a supportive network and to launch a national awareness campaign will go a long way toward addressing this particular problem. But more fundamentally, she sees that the culture of healthcare–a culture that is decidedly top-down in Uganda–needs fixing. Through her work on infertility, she encourages doctors and patients to explore treatment options jointly and in ways that consider the psychological and emotional, as well as the medical, implications of health problems. The shift she is engineering will mean that patients challenge their doctors to deliver high-quality, relevant care; that doctors value patients' counsel and use opportunities of patient interaction to educate as well as treat; and that policymakers seek citizens' input in shaping healthcare policy. To aid this shift, Rita taps the network of Ugandan physicians abroad, drawing in expertise from more developed countries.




THE PROBLEM

Studies directed by the World Health Organization suggest that infertility or subfertility affect as much as one-third of child-bearing-aged couples in underdeveloped areas of the world, especially in many parts of sub-Saharan Africa. The figure is staggering; the global average is 8 to 12 percent. Broader health issues explain the high incidence in Uganda and in many parts of the region–malnutrition, serious infection early in life, high rates of sexually transmitted diseases, unavailability of information, and inadequate treatment options.

In East Africa, where infertility is often seen as a result of evil deeds, there are complex psychological and social dimensions to the problem. Couples who cannot conceive face a poignant, and sometimes unbearable, social stigma. The culture of silence and shame surrounding what is essentially a medical problem means that affected couples often have no one to confide in or seek help from–not family members, doctors, or other childless couples. With no support, they suffer in isolation, and many are unaware that treatment may be available to help them conceive. Women bear the worst of the blame: fertility is seen as their gift and male-factor infertility is largely unknown.

Overall, however, there are problems with healthcare generally. First, there is a shortage of doctors. This is especially pronounced in Uganda because most doctors, and certainly the best doctors, fled the country during Idi Amin's regime. Further, the culture of medicalcare is decidedly top-down. Doctors diagnose, then proclaim a course of treatment, often without consulting patients or exploring the psychological and emotional challenges their patients face. Patients, for their part, lack basic information about their health and are not assertive in challenging their doctors to explain problems and explore alternate treatments. They lack a voice in the national forum as well as in the exam room, which means that policies that shape the provision of healthcare are formed without citizen input. For many, healthcare is just one of many areas they feel powerless to influence.




THE STRATEGY

Rita convenes affected couples in a countrywide network, advocates for the adoption of low-cost treatment that enables some couples to conceive, and educates doctors, policymakers, and the public about the problem. Through her work, she encourages patients to be assertive in guiding decisions that affect their health and the provision of healthcare in society.

By bringing together infertile couples, Rita accomplishes three main goals. First, participating men and women gain a supportive community that allows them to cope with the emotional drain and social stigma infertility often brings. Second, they gain information that allows them to make informed choices. They learn that infertility is a medical problem, and that medical solutions may be available to help. Participants exchange information about treatment options and alternative ways of having children, like adoption. Third, through the network, Rita is creating a strong collective voice that allows infertile couples to reach doctors, policymakers, and the public, suggesting treatment options and raising awareness about the problem. The organization she formed in 2001 to coordinate her work has attracted 500 fee-paying members, and welcomes others at visitor days and at special events. Members of local groups come together for regular informal gatherings. Members in different parts of the country communicate frequently by post and email. In five-years' time, Rita expects the network to reach well beyond Uganda, addressing the needs of infertile couples throughout East Africa.

By engaging doctors, Rita seeks first of all to expand the offerings of infertility treatment to include low-cost methods of Assisted Reproductive Technologies. Using a strategy she hopes will be effective in addressing other health concerns, she draws in expertise from Ugandan doctors abroad. Through a partnership with one such doctor living in the Middle East, Rita has learned of ART that is available in other parts of the world. Having left Uganda years ago, the doctor, for his part, has reconnected with his home country and is committed to improving healthcare here. In partnership with Rita's organization, he has established a fertility clinic in Kampala to offer services that are standard in other parts of the world but unavailable in East Africa. For some types of infertility, ART offers the only effective method of conceiving; but in many other cases, simple behavioral adjustments, like wearing loose-fitting underclothes, can greatly increase a couple's chance of having a child. People need this information, and doctors need to know to give it to them.

Through her work on infertility, Rita seeks to correct what she sees as a deep problem in the culture of medical care: the top-down approach to treatment, which excludes patient input into decisions that can dramatically change their bodies and lives. She enlists supportive doctors as allies in reaching other doctors, and works directly with the Ministry of Health, offering her perspective–the citizen and patient perspective–on issues relating to healthcare policy. In all of her work, Rita encourages people to see themselves as healthcare consumers, assertive in guiding decisions about their health.

Rita sees clear progress in realizing this fundamental shift in the culture of medical care. Over the long term, she sees that her work and the work of her team will influence Uganda's national policy on reproductive health and infertility, and push for citizen involvement in all areas of healthcare policy.




THE PERSON

Rita feels deeply the social stigma that surrounds childlessness: for 16 years, she and her husband have tried to conceive a child. Early on, as she struggled with her own circumstance, she looked around and saw that many couples were childless. They lacked information about the problem and they lacked a supportive network. From these initial observations, she dove into an intensive self-guided course of study. She read every relevant article she could find. She talked to doctors. She talked to policymakers. She began to compare healthcare systems around the world, looking at treatments available in other countries, probing what resources would be necessary to bring such treatments to East Africa.

From this path, Rita has emerged as a lay expert in infertility and related reproductive health issues. Since founding the Joyce Reproductive Health Center in 2000, she has confronted situations that have required her to speak boldly as a patient and citizen: in a recent World Health Organization conference in Kampala, she was the only "expert" in a room full of doctors.

Rita has been frank and open about her own journey, delivering to the Ugandan public a personal story of determination and courage. Aided by treatment she has helped to bring to Uganda, she hopes one day to have a child.