10 Diseases That Used to Be Death Sentences
Infectious Diseases And Vaccines
Globally the incidence of infectious diseases has declined since 2000, but they continue to have major health and economic costs. Infectious diseases can lock people into poverty, undermine the resilience of communities, and have devastating consequences for a country's economy.
Caused by pathogenic microorganisms, such as bacteria, viruses, parasites or fungi, infectious diseases, also known as communicable diseases, can be spread directly or indirectly from one person to another. Reducing the spread of infectious diseases globally is beneficial for a population's health and a country's economy, and an essential prerequisite for achieving universal health coverage (UHC), where everyone can obtain quality health services without suffering financial hardship. Reaching the goal of UHC requires prevention of and access to quality treatment for infectious diseases, including malaria, TB and HIV, as well as adequate sanitation. It also requires countries to invest resources in pandemic preparedness and the strengthening of their health systems.
To help with this, the WBG works with countries to ensure that essential health interventions for infectious diseases, including surveillance, prevention, early detection, and treatment, are adequately planned, costed, and budgeted for in national health sector plans and carried out in a sustainable manner. The WBG has also made important contributions towards the immunization of children and vulnerable populations against preventable infectious diseases.
Vaccines
Vaccines, which are biological preparations that improve immunity to a particular disease, are a vital part of disease prevention and one of the most cost-effective investments in health and economic development. Immunization can prevent the suffering and death associated with infectious diseases like polio, measles, and pneumonia. Yet, the World Health Organization (WHO) estimates that 1.5 million children under the age of 5 lose their lives to vaccine-preventable diseases every year.
The WBG strongly supports childhood immunizations, as expanding access to vaccines is crucial for eliminating infectious diseases and achieving UHC. The WBG was one of the founding members of Gavi, the global Vaccine Alliance working to create access to new and underused vaccines for children living in the world's poorest countries.
The WBG is also a global partner in the fight to eradicate polio, working with the Global Polio Eradication Initiative (GPEI), a public-private partnership led by national governments with five partners, including Rotary International and the Bill & Melinda Gates Foundation. The WBG has invested almost $US 600 million in projects to strengthen routine immunization and to help eliminate polio in the three countries where the disease remains endemic: Nigeria, Pakistan, and Afghanistan. Work is also being done in countries affected by instability and conflict. In Yemen, for example, where the crisis has taken a heavy toll on the country's children, the WBG has channeled its funding through the WHO and UNICEF to continue to provide critical support for the delivery of essential health services, including national polio campaigns. This has contributed to the vaccination of 1.5 million Yemeni children under 5.
HIV/AIDS
Ensuring universal access to HIV services is a key part of achieving UHC. There were 37.7 million people worldwide living with HIV in 2020, half of which are women and girls. 79% of female adults aged 15 years and older had access to treatment and just 68% of male adults had access. Without effective HIV prevention, the number of people requiring treatment will grow and may become unsustainable for countries and health systems.
The WBG pioneered global HIV and AIDS financing early on during the crisis and has been a key part of the response ever since. The WBG offers financing, specialized technical support, and knowledge to countries for effective prevention of new HIV infections, care and treatment for people living with HIV/AIDS, the alleviation of social and economic consequences for affected communities, and programs that address the underlying social and structural drivers of HIV.
Since 1989, WBG financing for programs that support HIV and AIDS-related prevention, and treatment outcomes has totaled over $US9 billion. Specifically, through the International Development Association (IDA), the WBG's fund for the poorest, between 2000 and 2014 the WBG ensured that 1.3 million adults and children received antiretroviral combination therapy; purchased and/or distributed 386 million condoms for the prevention of HIV, sexually transmitted diseases, and unwanted pregnancies; and trained 2.6 million health personnel to improve the quality of health services delivery. The WBG has funded about 50,000 community AIDS organizations globally, helping to create effective community responses in more than 50 countries.
Malaria
Malaria continues to take a high toll on households and health care systems, and impedes economic development in endemic countries. It is estimated that malaria reduces GDP growth by approximately 1.3% per year in some African countries. While robust investments in malaria control over the past decade have yielded remarkable returns, half the world's population still remains at risk of malaria, and transmission is ongoing in 95 countries and territories. Sub-Saharan Africa continues to carry a disproportionately high share of the global malaria burden.
In response, the WBG treats financing for malaria control as an integral part of financing for essential health services in the context of UHC. The most cost-effective interventions against malaria include the use of long-lasting, insecticidal-treated mosquito nets, seasonal malaria chemoprevention (SMC), effective case management (rapid diagnosis and effective treatment), and indoor residual spraying. The WBG works with countries to ensure that essential health interventions (including malaria) are effectively and sustainably integrated in national health sector plans.
Between 1989 and 2011, there were 73 WBG-financed health projects with malaria control activities; of which 42 projects were in Africa. Under the Malaria Booster Program (2005-2010), the WBG committed almost US$ 1 billion for malaria control in Africa and India. The WBG also has a $US 73.2 million program for SMC, which aims to prevent malaria in young children in areas of higher transmission, and specifically highly seasonal areas, covering the border districts of Burkina Faso, Mali, and Niger. The WBG's malaria strategy also extends to sectors other than health. A $US 42 million malaria program covering the Senegal River Basin (including Senegal, Mali, Mauritania, and Guinea) was embedded in a larger Water Resource Development Project covering the same countries. In addition to these investments, the WBG is a founding member of the Roll Back Malaria Partnership, which serves as a global framework for implementing a coordinated response against malaria.
Tuberculosis (TB)
For the first time in many years, data suggest that the absolute number of tuberculosis (TB) cases has been falling since 2006. Despite this achievement, in 2015 10.4 million people developed TB with an estimated 480,000 people developing multidrug-resistant TB (MDR-TB). That same year, 1.8 million people, including 400,000 suffering from the double burden of TB and HIV, died from the disease. The Southern Africa region is at the epi-center of both epidemics. The combined effects of the TB and HIV/AIDS epidemics poses significant public health and economic challenges and threaten development gains made within the Southern African Development Community (SADC) region.
The WBG is committed to helping countries control and reduce the spread of TB, a necessary step for achieving UHC. The WBG does this by supporting TB control programs directly and by strengthening health and social protection systems, public housing and environment, and tobacco control measures. The WBG also supports the goals of the WHO's End TB Strategy.
From 2005-2012, the WBG had 17 projects on TB control in 16 countries and three multi-country projects. For example, from 2002 to 2010, the WBG-supported China Tuberculosis Control Project—the largest effort of its kind ever conducted—provided access to effective TB control services in 16 provinces, covering an estimated 680 million Chinese citizens. The project reduced TB-associated deaths by 770,000, and prevented 20 million people from being infected by TB and 2 million people from falling ill. The project was financed by an international partnership, including US$ 101.44 million from the WBG.
In Southern Africa, the WBG is funding the region's efforts to scale-up the response to TB in line with the 2012 SADC Declaration on TB and the SADC Health Protocol. The 2016 US$ 122 million, IDA funded Southern Africa Tuberculosis and Health Systems Project is working to support efforts to tackle TB in Lesotho, Malawi, Mozambique, and Zambia and to help strengthen these countries' health systems. The project targets underserved populations with a high TB and/or TB/HIV burden, including mining communities, transport corridors, and cross-border areas. In addition, under the South Africa Knowledge Hub, the WBG initiated the Southern Africa TB in the Mining Sector Initiative, which is taking an innovative and a more harmonized regional approach to tackling TB among mineworkers in the area.
Neglected Tropical Diseases (NTDs)
Although neglected tropical diseases (NTDs) are preventable and treatable, they affect over 1 billion of the world's most vulnerable, disadvantaged people and cost developing economies billions of dollars every year. This group of communicable diseases, which includes river blindness, elephantiasis, trachoma, soil-transmitted helminths, and schistosomiasis, prevail in tropical and subtropical conditions in 149 countries, with Africa experiencing over 50% of the world's NTD burden.
NTD-focused interventions must be in a country's basic package of health care services in order for nations to achieve UHC. The WBG has been part of the long-running public-private partnerships that have supported efforts to fight these diseases. In 1974 an agreement by then WBG President Robert McNamara to establish a Partnership to Control River Blindness was among the first World Bank health projects. It was also one of the most successful, effectively reaching millions in Africa. To date, the WBG has committed some US$ 160 million to NTDs in Africa from a combination of national and regional programs, including the Senegal River Basin Project and the Sahel Malaria and Neglected Tropical Diseases Project, which focuses on integrating NTD treatment in Burkina Faso, Mali, and Niger of five preventable NTDs and preventing and treating malaria.
This global fight against NTDs was revolutionized in 2012, when leaders from the largest pharmaceutical companies came together with global health and development organizations, including the WBG, in London and pledged to unite in their efforts to support the WHO's roadmap on NTDs. The roadmap set targets to enhance control, prevention, elimination, and eradication of these diseases by 2020. The Neglected Tropical Diseases Summit took place in Geneva, Switzerland, in April 2017 to mark the 5th anniversary of the WHO roadmap, during which the WBG renewed its commitment to these targets.
Deadly Diseases
The female Anopheles mosquito may well be the most dangerous creature on Earth. When she lands on human skin, she sucks up blood through her needle-shaped mouth and injects saliva into the wound. If this saliva contains Plasmodia parasites, the victims will soon suffer severe fever, violent shivering, and profuse sweating — the telltale symptoms of malaria.
"Malaria" is a misnomer. Drawn from the Italian mala aria, or "bad air," the name reflects the historical belief that the disease is caused by miasmas, or noxious exhalations from rotting matter or stagnant water. In 1889, a tiny parasite was revealed as the disease-causing agent, and eight years later, the mosquito was identified as the parasite-carrying agent.
When a mosquito carrying malaria bites her victim, she injects parasites into the bloodstream, where they migrate to the liver and other organs and incubate. A malaria victim may show no symptoms for weeks or months during this incubation. Then the parasites return to the bloodstream and invade the red blood cells. Rapid multiplication of the parasites ruptures the red cells, releasing more parasites into the bloodstream and causing the characteristic symptoms. If the person does not receive prompt and effective drug therapy, damage may occur to the brain and other organs, sometimes leading to death.
Malaria is largely a geographical disease, endemic to tropical climates in Africa, Asia, and South America. An estimated 350 million to 500 million people worldwide are infected with malaria each year; of the more than one million who die, two-thirds are children. An African child under 5 suffers on average six bouts of the recurring illness each year.
In the United States, malaria was historically a problem in the southeastern states. Begun in 1947, the National Malaria Eradication Program (the precursor of the Centers for Disease Control, or CDC) applied the insecticide DDT to the interior surfaces of rural homes and entire properties where malaria was reportedly prevalent. About 4.6 million houses were sprayed, and five years later, malaria was considered eliminated in the United States.
A remarkable man named Fred Soper first took on malaria in Brazil in the 1930s. With the passion and determination of a field general directing an army, Soper eliminated the Anopheles gambiae mosquito from the country within a decade, stopping a deadly outbreak in its path. His success raised hopes that malaria could be eliminated worldwide. By 1948, 55 nations had signed up for the Global Malaria Eradication Program Soper would go on to lead.
With DDT as their tool, Soper's mosquito warriors were successful in sharply curtailing malaria or eliminating it entirely from nearly 40 countries, including Taiwan, many Caribbean nations, the Balkans, and parts of North Africa. But just as they seemed to be on the brink of victory, their luck ran out. First, mosquitoes began to develop resistance to DDT, and then, in 1962, Rachel Carson's Silent Spring identified the harmful effects of DDT on ecosystems. The chemical was subsequently banned in the United States. While this action benefited the environment, it hurt Soper and his team's international efforts to combat malaria, in which only a small amount of DDT was used indoors. To this day, researchers continue to look for a chemical comparable to DDT in its mosquito-killing effectiveness.
Despite decades of research work, a successful vaccine for malaria remains elusive. Scientists hope that the genetic decoding of the malaria parasite may offer helpful points of intervention for interrupting its life cycle. Meanwhile, several current research efforts seem promising, largely bolstered by the Bill & Melinda Gates Foundation (The Bill & Melinda Gates Foundation is a funder of the Rx for Survival project).
People residing in non-malaria-endemic areas are normally safe in their home countries, although a few cases are reported each year of "airport malaria," in which a mosquito, hitching a ride on an aircraft, causes disease. Travelers to malarial areas have a high risk of catching a serious infection because they lack the natural immunity that provides local residents some protection.
Tourists can take an antimalarial drug as an effective preventative. (If taken for a long time, some of these drugs have long-term side effects, and are therefore not recommended for residents of malaria-endemic regions). Doctors may prescribe a course of medication for travelers that covers the immediate time before, during, and after a visit to a malaria area. Several medications, including doxycycline, atovaquone/proguanil, mefloquine, and primaquine, have proven effective.
But malaria is one of nature's most resilient killers, and the Plasmodium parasite is becoming resistant to these older medications. A promising new drug, artemisinin, has been synthesized from a plant used as a treatment in China for centuries. Demand for artemisinin currently far outstrips supply, and costs of the treatment remain beyond the reach of many malaria victims.
About 99 percent of mosquitoes carrying the malarial parasite are night biters, so for travelers and native populations alike, netting treated with insecticide for sleeping areas is crucial. In the absence of an effective mosquito-elimination method, netting can prevent many of the one million malaria deaths of children under 5 each year, and save many adults from unnecessary illness and death as well.
Return to Deadly Diseases
How Ignorance And Gender Inequality Thwart Treatment Of A Widespread Illness
Credit: Chiara Zarmati
On a visit to a woman at home in rural Zambia, community-health worker Janet Chisaila unpacks a bag that contains swabs, sample pots and a 3D-printed model of a vagina and cervix. Using the model, Chisaila explains how to use the swabs to take genital samples. The woman then goes to a private area to do her sampling. Later, she visits the local health clinic, where Chisaila's colleague Alice Mwale, a nurse, takes digital photographs of the woman's cervix, which are then uploaded to a secure platform. Thousands of miles away, at the London School of Hygiene & Tropical Medicine, clinician and principal investigator Amaya Bustinduy logs in to the platform to review the images and offer advice.
Part of Nature Outlook: Neglected tropical diseases
The woman is one of around 2,500 taking part in a study1 called Zipime Weka Schista! (Do self-testing, sister!), which aims to transform the diagnosis of a little-known neglected tropical disease (NTD) called female genital schistosomiasis (FGS). By combining FGS screening with testing for HIV, human papillomavirus (HPV) and a sexually transmitted disease called trichomoniasis in a single visit, the tests are striking a blow for gender equality and women's sexual- and reproductive-health rights. "This approach has empowered the women to know about these diseases," says Chisaila. "They have been given the confidence to talk about some of these health issues and have access to treatment and care."
FGS is a debilitating gynaecological condition caused by chronic infection with a parasitic disease known as schistosomiasis. Painful and stigmatizing, the disease is associated with reduced fertility and miscarriage. Infection increases the risk of contracting HIV, and probably HPV and cervical cancer as well. Although it was first recorded2 125 years ago, few people — even health-care workers in regions where the condition is thought to be most common — are aware that it exists. "FGS is neglected, under-researched and overlooked in endemic countries," says Kwame Shanaube, clinical epidemiologist and site coordinator of the Zipime Weka Schista! Study at Zambart, a Zambian non-governmental public-health research organization in Lusaka that specializes in public health and grew out of a collaboration between the University of Zambia's School of Medicine and the London School of Hygiene & Tropical Medicine.
Women and girls are vulnerable to FGS both because of their sex and because of socially determined roles and expectations that increase their exposure to infection and make it difficult for them to access treatment or talk about their symptoms. The social roles of women expose them more often to infection, and make it harder to access prevention and treatment, or even to talk about their symptoms than do those of men. "It's very hard for women to talk about painful sex and sub-fertility in contexts where it's hard to access a health-care provider," says Sally Theobald at the Liverpool School of Tropical Medicine, UK, who studies gender inequity and health systems. "So it is this chronic pain and rights issues that have been going on for decades and decades."
FGS is a disease of compounded neglect: ignored because it is an illness found mainly in low-income countries; overlooked because of a lack of awareness; stigmatized because it pertains to sexual health; and further neglected because it affects women, especially low-income and marginalized women, whose health is chronically underfunded and under-researched. Tackling it is therefore not merely a biomedical problem, but also one that involves addressing gender inequality and the sexual and reproductive health rights of women and girls.
An insidious diseaseSchistosomiasis, also called bilharzia, is caused by parasitic worms known as schistosomes. The species that causes FGS, Schistosoma haematobium, infests freshwater lakes and rivers. The larvae burrow through a person's skin, making their way to a collection of veins around the bladder and pelvic organs. There, the larvae mature into adults, each the size of a grain of rice, and mate. Each female worm lays hundreds of eggs. These work their way through the bladder wall with the aid of sharp spines and destructive enzymes. Once in the bladder, the eggs are released through urination into the environment to start the cycle anew.
In some societies, girls are expected to fetch the family's water.Credit: Simon Townsley/Panos Pictures
Left untreated, the infection becomes chronic. "These worms can live in your bloodstream for 30 or 40 years," says Evan Secor, a parasitologist at the US Centers for Disease Control and Prevention in Atlanta, Georgia. Between 30% and 75% of women infected with S. Haematobium go on to develop FGS, which occurs when schistosome eggs end up trapped in the tissues of the reproductive system, including the cervix, vagina and fallopian tubes. These trapped eggs cause pain and become surrounded by immune cells, forming inflamed nodules called granulomas, which in turn can lead to scarring. Men can also get genital schistosomiasis, particularly those whose occupations put them at increased risk, such as freshwater fishermen.
Only about 15,000 women and girls in endemic areas have been included in study surveys for FGS, so there are no precise figures for the prevalence of the condition, says Bustinduy. Estimates suggest that between 30 million and 56 million women globally have FGS, most of them in sub-Saharan Africa.
Part of the problem lies in the difficulty of diagnosing the disease. Conventional approaches involve inspecting the cervix with an instrument known as a colposcope, or taking a biopsy and sending it to a lab to look for schistosome eggs under a microscope. But these tools are rarely available in endemic areas — colposcopes are expensive and require specialized gynaecological training to use.
Looking for schistosome eggs in urine samples is cheap, but misses most FGS cases because the correlation between eggs in urine and FGS is only about 20–30% . Molecular testing to detect schistosome DNA in samples such as urine is much more reliable but requires specialist facilities and expensive reagents. Facilities such as these are also usually found only in hospitals, which can be hard for people with low incomes to travel to. And gynaecological examination of girls and young women before they are sexually active is unacceptable in some cultures.
Diagnostic delays mean that, even after standard treatment with a drug called praziquantel that kills the adult worms, women can have permanent tissue damage. Delphine Pedeboy-Knoetze, who grew up in France but who now lives and works in South Africa, had FGS that went undiagnosed for several months. She still experiences chronic pain six years later. "It's extremely demoralizing, because nobody can establish what's wrong," she says. Consultations with multiple specialists in various countries have yielded no answers. This adds to the mental-health burden of FGS. "It's the loneliness of it," she says. "That's the scariest feeling, because you think, 'Oh wow, I really am on my own'."
An array of neglectThe astonishing lack of awareness of FGS among health workers starts with education. FGS is not mentioned in many medical textbooks and rarely forms part of medical training. The classic symptom of urogenital schistosomiasis is blood in the urine, which can be confused with menstruation or 'spotting'. This means that the disease is assumed to affect men only. "Health professionals do not have FGS in their radar of diagnosis," says Motto Nganda, a clinician at the Liverpool School of Tropical Medicine who has studied how to integrate FGS management into primary health-care settings in Liberia.
Schistosoma larvae can burrow through a person's skin.Credit: LENNART NILSSON, TT/SCIENCE PHOTO LIBRARY
This means that genital symptoms can be wrongly attributed to sexually-transmitted infections, with the result that women are not only given ineffective treatment, but also stigmatized. Teenage girls report being scolded by clinic nurses who assume that the girls have had premarital sex, while older women (or their partners) have been accused of infidelity. Pedeboy-Knoetze, for example, was told that she had herpes and to be suspicious of her partner.
Larger political decisions have also shaped the neglect of FGS, says Laura Dean, who studies person-centred health-system responses to NTDs at the Liverpool School of Tropical Medicine. Mass drug-administration is the main effort to control NTDs that can be tackled in this way, including schistosomiasis, she says. The approach is designed to prevent and treat these diseases in endemic areas. This is an essential strategy and one that should be continued, Dean says. However, it isn't a magic bullet that, in isolation, can prevent continuous cycles of reinfection — particularly for a disease such as schistosomiasis that is closely linked to the broader environment and access to clean water, sanitation and hygiene. People who cannot access these programmes, or for whom the drugs don't work, can develop chronic morbidities. This risk is especially high for diseases such as schistosomiasis in which there is a high risk of reinfection3.
Compounding all of these factors is gender: the social expectations and roles that societies attribute to men and women (and people of other genders). Gender is increasingly being recognized as a key factor that affects an individual's vulnerability to NTDs, and FGS is a classic example. "Gender norms in many contexts mean that much of the work done by women in households and communities involves a lot of interaction with water," says Theobald. This includes doing the family's laundry and fetching water from local rivers and ponds. "So there's ongoing exposure to schistosomiasis in multiple ways."
Gender also affects access to treatment and health care. For schistosomiasis, this involves the mass administration of praziquantel in vulnerable populations4. This is often delivered to children in schools, but girls are less likely to attend school than are boys, says Secor. Gender inequality also affects how women experience the disease once they have it. "It brings subfertility, it brings painful sex, it brings discharge, and it's in a context where there's so much pressure to conceive," says Theobald. For example, in some parts of Liberia and Nigeria, a woman's social status is linked to fertility and her ability to have children. As a result of poor sexual and reproductive health, including pregnancy complications or infertility, women with FGS can be ostracized, accused of witchcraft, and faced with the loss of their homes and partners5.
"The fact that there's a parasite that's easily treatable with a dose of praziquantel that costs very little and that can change the outcome of a woman's life, and we're not doing that, is absolutely shocking," says Pedeboy-Knoetze. "Shame on the global-health community and shame on the medical community for this."
Attack on all frontsAll of this means that programmes to tackle FGS need to build in social, political and cultural factors, as well as biomedical ones. They also need to work with the clinical resources that are available in endemic areas. In the past few years, a number of projects have piloted ways to do this. The Zipime Weka Schista! Study, for example, uses culturally appropriate ways to raise awareness of FGS. Drama groups perform songs and dances in areas such as community marketplaces to draw in members of the public and communicate messages about FGS. Community workers then go door to door to offer more information and to recruit study participants.
A health worker at a medical centre in Zimbabwe tests for schistosome parasites.Credit: Xinhua/Shutterstock
Reactions from the communities have been positive, says Rhoda Ndubani, a social scientist and study manager of Zipime Weka Schista! At Zambart. The project is reducing stigma around these diseases and giving women the confidence to talk about them and seek treatment, she adds. It's also empowering the nurses and community midwives. "It's really helping us because, before, I did not know that women can actually get schistosomiasis," says Mwale. Training and handheld colposcopes are already allowing nurses to make FGS diagnoses independently and to administer praziquantel immediately.
Similar messages came out of a study in Liberia. Nganda, Dean and their colleagues piloted a clinical-care package in primary-care settings, which included an FGS symptoms checklist, training in simple gynaecological examinations and treatment guides. Importantly, the package included training traditional midwives, who are trusted in local communities. The study diagnosed and treated 245 women and girls over a period of 6 months, during routine primary health care6. A related study5 in Nigeria returned similar findings. "It's showing what is possible to do within different under-resourced health systems," says Theobald.
Making diagnoses in primary-care settings that are accessible to women is key. "We're trying to steer away from using hospitals as much as possible, because that is really when the bottleneck comes in," says Bustinduy. The goal, she says, is to instead promote the use of rural clinics staffed with midwives and nurses. It's also about making the FGS diagnosis less reliant on clinical examinations, which can result in varying diagnoses depending on the physicians, adds Secor, who chairs a World Health Organization diagnostic advisory panel for FGS diagnostics. "We're really trying to move to something that's a little bit more objective," he says.
Taking inspiration from other self-sampling programmes, such as those in place for HPV and HIV, Bustinduy and her colleagues conducted a study of around 600 women to explore the use of self-sampled genital swabs and DNA testing7. The BILHIV (bilharzia and HIV) study showed that participants readily accepted self-sampling, that it was as good as clinical sampling at detecting FGS, and, therefore, that home-based self-sampling could present a scalable way of diagnosing FGS in endemic regions. In further experiments, the BILHIV study investigated a lower cost alternative to the DNA-amplifying technique PCR called recombinase polymerase amplification (RPA). Unlike PCR, RPA works at room temperature, and is rapid and highly portable. The findings suggested that RPA was a viable alternative to PCR, and could form part of a portable laboratory to be used at point of care8.
FGS is associated with other genital infections, such as HIV, HPV (the main cause of cervical cancer) and trichomoniasis. The Zipime Weka Schista! Study therefore aims to see whether testing for all four could be integrated into a single home visit. Like the BILHIV study, the approach is getting a positive reaction from women — especially the self-sampling aspect. "For many, it is the first time they have been screened in this way," says Chisaila.
Scaling upThere are signs that the condition is slowly starting to shed its neglected status: its association with HIV has brought the sexual and reproductive health communities together, and advocacy by FGS researchers is moving the issue up national and international health agendas. In January, for example, a government committee report recommended that FGS be integrated into the UK government's sexual and reproductive rights aid programmes. Witnesses testifying to the committee advocated moving away from a focus on individual diseases to a patient-centred one — FGS often falls into a gap between NTD and sexual-health programmes. The Joint United Nations Programme on HIV/AIDS has also recognized the need for FGS integration.
Science has its part to play, too. One aspect is in finding ways to help women like Pedeboy-Knoetze who have tissue damage. "We don't really have a good way to treat that chronic, longer, more severe pathology," says Secor. Another is finding ways to prevent the disease, such as vaccination. Adding these to mass drug-administration programmes could reduce the risk of reinfection and help to cut the cycle of transmission. Three vaccines are currently undergoing development. Although each targets the Schistosoma mansoni parasite, which causes intestinal schistosomiasis, one of them also protects against S. Haematobium. This vaccine, called Sm-p80 (SchistoShield), is in phase I trials.
More diagnostics are also in the works. DNA swabs are thought not to work well in advanced FGS, because the eggs are walled inside scar tissue, so researchers are exploring two other approaches. One is a test for schistosome antigens in the blood that is scheduled to go into field trials in the next few months, says Secor. Another approach, one Secor's team is taking, is testing for anti-schistosome antibodies. Although these don't necessarily reveal whether a person has an active infection (antibodies persist for a long time), such tests could be easy to incorporate into routine clinical screening, such as prenatal visits. Tests under development include lateral-flow tests similar to pregnancy tests or those used to rapidly detect COVID-19 (ref. 9). These tests can detect antibodies or schistosome antigens and are easy for users to interpret, and would ideally cost less than US$1 per test, says Secor. "I'm optimistic," he says, "but we're not there yet."
Complicating matters is that any new approaches to diagnosing and treating FGS must be adapted to the realities of living in some of the poorest, most marginalized communities in the world. "If we can do that, it's a win–win for gender equity, rights and social justice," says Theobald. "It's a win–win for responsive, effective, person-centred health systems."
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