Day: May 19, 2024

Accra, Ghana — Anita Akpeere prepared fried rice in her kitchen in Ghana’s capital as a flurry of notifications for restaurant orders lit up apps on her phone. “I don’t think I could work without a phone in my line of business,” she said, as requests came in for her signature dish, a traditional fermented dumpling.

Internet-enabled phones have transformed many lives, but they can play a unique role in sub-Saharan Africa, where infrastructure and public services are among the world’s least developed, said Jenny Aker, a professor who studies the issue at Tufts University. At times, technology in Africa has leapfrogged gaps, including providing access to mobile money for people without bank accounts.

Despite growing mobile internet coverage on the continent of 1.3 billion people, just 25% of adults in sub-Saharan Africa have access to it, according to Claire Sibthorpe, head of digital inclusion at the U.K.-based mobile phone lobbying group GSMA. Expense is the main barrier. The cheapest smartphone costs up to 95% of the monthly salary for the poorest 20% of the region’s population, Sibthorpe said.

Literacy rates that are below the global average, and lack of services in many African languages — some 2,000 are spoken across the continent, according to The African Language Program at Harvard University — are other reasons why a smartphone isn’t a compelling investment for some.

“If you buy a car, it’s because you can drive it,” said Alain Capo-Chichi, chief executive of CERCO Group, a company that has developed a smartphone that functions through voice command and is available in 50 African languages such as Yoruba, Swahili and Wolof.

Even in Ghana, where the lingua franca is English, knowing how to use smartphones and apps can be a challenge for newcomers.

One new company in Ghana is trying to close the digital gap. Uniti Networks offers financing to help make smartphones more affordable and coaches users to navigate its platform of apps.

For Cyril Fianyo, a 64-year-old farmer in Ghana’s eastern Volta region, the phone has expanded his activities beyond calls and texts. Using his identity card, he registered with Uniti, putting down a deposit worth 340 Ghanaian Cedis ($25) for a smartphone and will pay the remaining 910 Cedis ($66) in installments.

He was shown how to navigate apps that interested him, including a third-party farming app called Cocoa Link that offers videos of planting techniques, weather information and details about the challenges of climate change that have affected cocoa and other crops.

Fianyo, who previously planted according to his intuition and rarely interacts with farming advisors, was optimistic that the technology would increase his yields.

“I will know the exact time to plant because of the weather forecast,” he said.

Kami Dar, chief executive of Uniti Networks, said the mobile internet could help address other challenges including accessing health care. The company has launched in five communities across Ghana with 650 participants and wants to reach 100,000 users within five years.

Aker, the scholar, noted that the potential impact of mobile phones across Africa is immense but said there is limited evidence that paid health or agriculture apps are benefiting people there. She asserted that the only beneficial impacts are reminders to take medicine or get vaccinated.

Having studied agricultural apps and their impact, she said it doesn’t seem that farmers are getting better prices or improving their income.

Capo-Chichi from CERCO Group said a dearth of useful apps and content is another reason that more people in Africa aren’t buying smartphones.

Dar said Uniti Networks learns from mistakes. In a pilot in northern Ghana designed to help cocoa farmers contribute to their pensions, there was high engagement, but farmers didn’t find the app user-friendly and needed extra coaching. After the feedback, the pension provider changed the interface to improve navigation.

Others are finding benefit with Uniti’s platform. Mawufemor Vitor, a church secretary in Hohoe, said one health app has assisted her to track her menstruation to help prevent pregnancy. And Fianyo, the farmer, has used the platform to find information on herbal medicine.

But mobile phones are no substitute for investment in public services and infrastructure, Aker said.

She also expressed concerns about the privacy of data in the hands of private technology providers and governments. With digital IDs in development in African nations such as Kenya and South Africa, this could pave the way for further abuses, Aker said.

Uniti Networks is a for-profit business, paid for each customer that signs up for paying apps. Dar asserted that he was not targeting vulnerable populations to sell them unnecessary services and said Uniti only features apps that align with its idea of impact, with a focus on health, education, finance and agriculture.

Dar said Uniti has rejected lucrative approaches from many companies including gambling firms. “Tech can be used for awful things,” he said.

He acknowledged that Uniti tracks users on the platform to provide incentives, in the form of free data, and to provide feedback to app developers. He acknowledged that users’ health and financial data could be at threat from outside attack but said Uniti has decentralized data storage in an attempt to lessen the risk.

Still, the potential to provide solutions can outweigh the risks, Aker said, noting two areas where the technology could be transformative: education and insurance.

She said mobile phones could help overcome the illiteracy that still affects 773 million people worldwide according to UNESCO. Increased access to insurance, still not widely used in parts of Africa, could provide protection to millions who face shocks on the front lines of climate change and conflict.

Back in Fianyo’s fields, his new smartphone has attracted curiosity. “This is something I would like to be part of,” said neighboring farmer Godsway Kwamigah.
…

London — The final report of the U.K.’s infected blood inquiry will be published Monday, nearly six years after it began looking into how tens of thousands of people contracted HIV or hepatitis from transfusions of tainted blood and blood products in the 1970s and 1980s.

The scandal is widely seen as the deadliest to afflict Britain’s state-run National Health Service since its inception in 1948, with around 3,000 people believed to have died as a result of being infected with HIV and hepatitis, an inflammation of the liver.

The report is expected to criticize pharmaceutical firms and medical practitioners, civil servants and politicians, although many have already died given the passage of time. It’s also set to pave the way to a huge compensation bill that the British government will be under pressure to rapidly pay out.

Had it not been for the tireless campaigners, many of whom saw loved ones die decades too soon, the scale of the scandal may have remained hidden forever.

“This whole scandal has blanketed my entire life,” said Jason Evans, who was four when his father died at the age of 31 in 1993 after contracting HIV and hepatitis from an infected blood plasma product.

“My dad knew he was dying and he took many home videos, which I’ve got and replayed over and over again growing up because that’s really all I had,” he added.

Evans was instrumental in the decision by then-Prime Minister Theresa May to establish the inquiry in 2017. He said he just “couldn’t let it go.” His hope is that on Monday, he and countless others, can.

Here is a look at what the scandal was about and what the report’s impact may be.

What is the infected blood scandal?

In the 1970s and 1980s, thousands of people who needed blood transfusions, for example after childbirth or surgery, became exposed to blood tainted with hepatitis, including an as yet unknown kind that was later termed Hepatitis C, and HIV.

Those with haemophilia, a condition affecting the blood’s ability to clot, became exposed to what was sold as a revolutionary new treatment derived from blood plasma.

In the U.K., the NHS, which treats the majority of people, started using the new treatment in the early 1970s. It was called Factor VIII. It was more convenient when compared with an alternative treatment and was dubbed a wonder drug.

Demand soon outstripped domestic sources of supply, so health officials began importing Factor VIII from the U.S., where a high proportion of plasma donations came from prisoners and drug users who were paid to donate blood. That dramatically raised the risk of the plasma being contaminated.

Factor VIII was made by mixing plasma from thousands of donations. In this pooling, one infected donor would compromise the whole batch.

The inquiry heard estimates that more than 30,000 people were infected from compromised blood or blood products via transfusions or Factor VIII.

Missed chances

By the mid 1970s, there was evidence haemophiliacs being treated with Factor VIII were more prone to hepatitis. The World Health Organization, which had warned in 1953 of the hepatitis risks associated with the mass pooling of plasma products, urged countries not to import plasma.

AIDS, the biggest public health crisis since World War II, turned up in the early 1980s. Originally thought to be isolated to the gay community, it soon started appearing among haemophiliacs and those who had received blood transfusions.

Though the cause of AIDS — HIV — was not identified until 1983, warnings had been relayed to the U.K. government the year before that the causative agent could be transmitted by blood products. The government argued there was no conclusive proof. Patients were not informed of the risk and persisted with a treatment that put them in mortal danger.

Mistakes

The inquiry is expected to conclude that lessons from as early as the 1940s had been ignored.

Campaigners argue that since the 1940s it had been clear that heat killed hepatitis in another plasma product, albumin. They say authorities could have made Factor VIII safe before it was sold.

Evidence given to the inquiry suggested that authorities’ main objection was financial. Non-heated Factor VIII was prescribed by the NHS until late 1985.

Campaigners hope the inquiry’s core finding is that Factor VIII concentrates should never have been licensed for use unless heated.

Why now?

In the late 1980s, victims and their families called for compensation on the grounds of medical negligence. Though the government set up a charity to make one-off support payments to those infected with HIV in the early 1990s, it did not admit liability or responsibility and victims were pressured to sign a waiver undertaking not to sue the Department of Health to get the money.

Crucially, the waiver also prevented victims from suing for hepatitis, even though at that stage they only knew about their HIV infection. Years after signing, victims were told they had also been infected with hepatitis, mainly Hepatitis C.

There was no further group litigation until Evans, whose mother “crumbled” after his father’s death and who was called “AIDS boy” at school, brought a case claiming misfeasance in public office against the Department of Health.

Combined with political and media pressure, May announced the independent inquiry. It was, she said, “an appalling tragedy which should simply never have happened.”

Compensation

The government has accepted the case for compensation, with most estimates putting the final bill in the region of $12.7 billion. In October 2022, authorities made interim payments of 100,000 pounds to each survivor and bereaved partners.

The government is expected to announce different payments for different infections and address how and when bereaved families can apply for interim payments on behalf of the estates of people who have died.
…

Washington — After a nearly two year hiatus, Blue Origin flew adventurers to space on Sunday including a former Air Force pilot who was denied the chance to be the United States’ first Black astronaut decades ago. 

It was the first crewed launch for the enterprise owned and founded by Amazon billionaire Jeff Bezos since a rocket mishap in 2022 left rival Virgin Galactic as the sole operator in the fledgling suborbital tourism market. 

Six people including the sculptor Ed Dwight, who was on track to become NASA’s first ever astronaut of color in the 1960s before being controversially spurned, launched around 09:36 am local time (1436 GMT) from the Launch Site One base in west Texas, a live feed showed. 

Dwight — at 90 years, 8 months and 10 days — became the oldest person to ever go to space. 

“This is a life-changing experience, everybody needs to do this,” he exclaimed after the flight. 

Dwight added: “I thought I didn’t really need this in my life,” reflecting on his omission from the astronaut corps, which was his first experience with failure as a young man. “But I lied,” he said with a hearty laugh. 

Mission NS-25 is the seventh human flight for Blue Origin, which sees short jaunts on the New Shepard suborbital vehicle as a stepping stone to greater ambitions, including the development of a full-fledged heavy rocket and lunar lander. 

To date, the company has flown 31 people aboard New Shepard — a small, fully reusable rocket system named after Alan Shepard, the first American in space. 

The program encountered a setback when a New Shepard rocket caught fire shortly after launch on September 12, 2022, even though the uncrewed capsule ejected safely. 

A federal investigation revealed an overheating engine nozzle was at fault. Blue Origin took corrective steps and carried out a successful uncrewed launch in December 2023, paving the way for Sunday’s mission. 

After liftoff, the sleek and roomy capsule separated from the booster, which produces zero carbon emissions. The rocket performed a precision vertical landing. 

As the spaceship soared beyond the Karman Line, the internationally recognized boundary of space 100 kilometers above sea level, passengers had the chance to marvel at the Earth’s curvature and unbuckle their seatbelts to float — or somersault — during a few minutes of weightlessness. 

The capsule then reentered the atmosphere, deploying its parachutes for a desert landing in a puff of sand. However, one of the three parachutes failed to fully inflate, possibly resulting in a harder landing than expected. 

Bezos himself was on the program’s first ever crewed flight in 2021. A few months later, Star Trek’s William Shatner blurred the lines between science fiction and reality when he became the world’s oldest ever astronaut aged 90, decades after he first played a space traveler. 

Dwight, who was almost two months older than Shatner at the time of his flight, became only the second nonagenarian to venture beyond Earth. 

Astronaut John Glenn remains the oldest to orbit the planet, a feat he achieved in 1998 at the age 77 aboard the Space Shuttle Discovery. 

Blue Origin’s competitor in suborbital space is Virgin Galactic, which deploys a supersonic spaceplane that is dropped from beneath the wings of a massive carrier plane at high altitude. 

Virgin Galactic experienced its own two-year safety pause because of an anomaly linked with the 2021 flight that carried its founder British tycoon Richard Branson into space. But the company later hit its stride with half a dozen successful flights in quick succession. 

Sunday’s mission finally gave Dwight the chance he was denied decades ago. 

He was an elite test pilot when he was appointed by President John F Kennedy to join a highly competitive Air Force program known as a pathway for the astronaut corps, but was ultimately not picked. 

He left the military in 1966, citing the strain of racial politics, before dedicating his life to telling Black history through sculpture. His art, displayed around the country, includes iconic figures like Martin Luther King Jr, Frederick Douglass, Harriet Tubman and more. 
…

DENPASAR, BALI, INDONESIA — Elon Musk and Indonesian Health Minister Budi Gunadi Sadikin launched SpaceX’s satellite internet service for the nation’s health sector on Sunday, aiming to improve access in remote parts of the sprawling archipelago.   

Musk, the billionaire head of SpaceX and Tesla TSLA.O, arrived on the Indonesian resort island of Bali by private jet before attending the launch ceremony at a community health centre in the provincial capital, Denpasar.   

Musk, wearing a green batik shirt, said the availability of the Starlink service in Indonesia would help millions in far-flung parts of the country to access the internet. The country is home to more than 270 million people and three different time zones.

“I’m very excited to bring connectivity to places that have low connectivity,” Musk said, “If you have access to the internet you can learn anything.”   

Starlink was launched at three Indonesian health centers on Sunday, including two in Bali and one on the remote island of Aru in Maluku.   

A video presentation screened at the launch showed how high internet speeds enabled the real-time input of data to better tackle health challenges such as stunting and malnutrition.   

Asked about whether he planned to also invest in Indonesia’s electric vehicle industry, Musk said he was focused on Starlink first.   

“We are focusing this event on Starlink and the benefits that connectivity brings to remote islands,” he said, “I think it’s really to emphasize the importance of internet connectivity, how much of that can be a lifesaver.”   

Indonesia’s government has been trying for years to lure Musk’s auto firm Tesla to build manufacturing plants related to electric vehicles as the government wants to develop its EV sector using the country’s rich nickel resources.   

The tech tycoon is scheduled to meet Indonesian President Joko Widodo on Monday, where he will also address the World Water Forum taking place on the island.   

Communications Minister Budi Arie Setiadi, who also attended the Bali launch, said Starlink was now available commercially, but the government would focus its services first for outer and underdeveloped regions.   

Prior to Sunday’s launch, Starlink obtained a permit to operate as an internet service provider for retail consumers and had been given the go-ahead to provide networks, having received a very small aperture terminal (VSAT) permit, Budi Setiadi told Reuters.   

SpaceX’s Starlink, which owns around 60% of the roughly 7,500 satellites orbiting earth, is dominant in the satellite internet sphere.   

Indonesia is the third country in Southeast Asia where Starlink will operate. Malaysia issued the firm a license to provide internet services last year and a Philippine-based firm signed a deal with SpaceX in 2022.   

Starlink is also used extensively in Ukraine, where it is employed by the military, hospitals, businesses and aid organizations. 
…

BENGALURU, India — Sizzling heat across Asia and the Middle East in late April that echoed last year’s destructive swelter was made 45 times more likely in some parts of the continent because of human-caused climate change, a study Tuesday found. 

Scorching temperatures were felt across large swaths of Asia, from Gaza in the west — where over 2 million people face clean water shortages, lack of health care and other essentials amid the Israeli bombardment — to the Philippines in the southeast, with many parts of the continent experiencing temperatures well above 40 degrees Celsius (104 degrees Fahrenheit) several days in a row. 

The study was released by the World Weather Attribution group of scientists, who use established climate models to quickly determine whether human-caused climate change played a part in extreme weather events around the world. 

In the Philippines, scientists found the heat was so extreme it would have been impossible without human-caused climate change. In parts of the Middle East, climate change increased the probability of the event by about a factor of five. 

“People suffered and died when April temperatures soared in Asia,” said Friederike Otto, study author and climate scientist at Imperial College in London. “If humans continue to burn fossil fuels, the climate will continue to warm, and vulnerable people will continue to die.” 

At least 28 heat-related deaths were reported in Bangladesh, as well as five in India and three in Gaza in April. Surges in heat deaths have also been reported in Thailand and the Philippines this year according to the study. 

The heat also had a large impact on agriculture, causing crop damage and reduced yields, as well as on education, with school vacations having to be extended and schools closed in several countries, affecting thousands of students. 

Myanmar, Laos and Vietnam broke records for their hottest April day, and the Philippines experienced its hottest night ever with a low of 29.8 degrees Celsius (85.6 degrees Fahrenheit). In India, temperatures reached as high as 46 degrees Celsius (115 degrees Fahrenheit). The month was the hottest April on record globally and the 11th consecutive month that broke the hottest-month record. 

Climate experts say extreme heat in South Asia during the pre-monsoon season is becoming more frequent and the study found that extreme temperatures are now about 0.85 degrees Celsius (1.5 Fahrenheit) hotter in the region because of climate change. 

Internally displaced people, migrants and those in refugee camps were especially vulnerable to the searing temperatures, the study found. 

“These findings in scientific terms are alarming,” said Aditya Valiathan Pillai, a heat plans expert at New Delhi-based think tank Sustainable Futures Collaborative. “But for people on the ground living in precarious conditions, it could be absolutely deadly.” Pillai was not part of the study. 

Pillai said more awareness about heat risks, public and private investments to deal with increasing heat, and more research on its impacts are all necessary to deal with future heat waves. 

“I think heat is now among the foremost risks in terms of personal health for millions across the world as well as nations’ economic development,” he said. 
…

PROVIDENCE, RHODE ISLAND — The voice Alexis “Lexi” Bogan had before last summer was exuberant.

She loved to belt out Taylor Swift and Zach Bryan ballads in the car. She laughed all the time — even while corralling misbehaving preschoolers or debating politics with friends over a backyard fire pit. In high school, she was a soprano in the chorus.

Then that voice was gone.

Doctors in August removed a life-threatening tumor lodged near the back of her brain. When the breathing tube came out a month later, Bogan had trouble swallowing and strained to say “Hi” to her parents. Months of rehabilitation aided her recovery, but her speech is still impaired. Friends, strangers and her own family members struggle to understand what she is trying to tell them.

In April, the 21-year-old got her old voice back. Not the real one, but a voice clone generated by artificial intelligence that she can summon from a phone app. Trained on a 15-second time capsule of her teenage voice — sourced from a cooking demonstration video she recorded for a high school project — her synthetic but remarkably real-sounding AI voice can now say almost anything she wants.

She types a few words or sentences into her phone and the app instantly reads it aloud.

“Hi, can I please get a grande iced brown sugar oat milk shaken espresso,” said Bogan’s AI voice as she held the phone out her car’s window at a Starbucks drive-thru.

Experts have warned that rapidly improving AI voice-cloning technology can amplify phone scams, disrupt democratic elections and violate the dignity of people — living or dead — who never consented to having their voice recreated to say things they never spoke.

It’s been used to produce deepfake robocalls to New Hampshire voters mimicking President Joe Biden. In Maryland, authorities recently charged a high school athletic director with using AI to generate a fake audio clip of the school’s principal making racist remarks.

But Bogan and a team of doctors at Rhode Island’s Lifespan hospital group believe they’ve found a use that justifies the risks. Bogan is one of the first people — the only one with her condition — who have been able to recreate a lost voice with OpenAI’s new Voice Engine. Some other AI providers, such as the startup ElevenLabs, have tested similar technology for people with speech impediments and loss — including a lawyer who now uses her voice clone in the courtroom.

“We’re hoping Lexi’s a trailblazer as the technology develops,” said Dr. Rohaid Ali, a neurosurgery resident at Brown University’s medical school and Rhode Island Hospital. Millions of people with debilitating strokes, throat cancer or neurogenerative diseases could benefit, he said.

“We should be conscious of the risks, but we can’t forget about the patient and the social good,” said Dr. Fatima Mirza, another resident working on the pilot. “We’re able to help give Lexi back her true voice and she’s able to speak in terms that are the most true to herself.”

Mirza and Ali, who are married, caught the attention of ChatGPT-maker OpenAI because of their previous research project at Lifespan using the AI chatbot to simplify medical consent forms for patients. The San Francisco company reached out while on the hunt earlier this year for promising medical applications for its new AI voice generator.

Bogan was still slowly recovering from surgery. The illness started last summer with headaches, blurry vision and a droopy face, alarming doctors at Hasbro Children’s Hospital in Providence. They discovered a vascular tumor the size of a golf ball pressing on her brain stem and entangled in blood vessels and cranial nerves.

“It was a battle to get control of the bleeding and get the tumor out,” said pediatric neurosurgeon Dr. Konstantina Svokos.

The tumor’s location and severity coupled with the complexity of the 10-hour surgery damaged Bogan’s control of her tongue muscles and vocal cords, impeding her ability to eat and talk, Svokos said.

“It’s almost like a part of my identity was taken when I lost my voice,” Bogan said.

The feeding tube came out this year. Speech therapy continues, enabling her to speak intelligibly in a quiet room but with no sign she will recover the full lucidity of her natural voice.

“At some point, I was starting to forget what I sounded like,” Bogan said. “I’ve been getting so used to how I sound now.”

Whenever the phone rang at the family’s home in the Providence suburb of North Smithfield, she would push it over to her mother to take her calls. She felt she was burdening her friends whenever they went to a noisy restaurant. Her dad, who has hearing loss, struggled to understand her.

Back at the hospital, doctors were looking for a pilot patient to experiment with OpenAI’s technology.

“The first person that came to Dr. Svokos’ mind was Lexi,” Ali said. “We reached out to Lexi to see if she would be interested, not knowing what her response would be. She was game to try it out and see how it would work.”

Bogan had to go back a few years to find a suitable recording of her voice to “train” the AI system on how she spoke. It was a video in which she explained how to make a pasta salad.

Her doctors intentionally fed the AI system just a 15-second clip. Cooking sounds make other parts of the video imperfect. It was also all that OpenAI needed — an improvement over previous technology requiring much lengthier samples.

They also knew that getting something useful out of 15 seconds could be vital for any future patients who have no trace of their voice on the internet. A brief voicemail left for a relative might have to suffice.

When they tested it for the first time, everyone was stunned by the quality of the voice clone. Occasional glitches — a mispronounced word, a missing intonation — were mostly imperceptible. In April, doctors equipped Bogan with a custom-built phone app that only she can use.

“I get so emotional every time I hear her voice,” said her mother, Pamela Bogan, tears in her eyes.

“I think it’s awesome that I can have that sound again,” added Lexi Bogan, saying it helped “boost my confidence to somewhat where it was before all this happened.”

She now uses the app about 40 times a day and sends feedback she hopes will help future patients. One of her first experiments was to speak to the kids at the preschool where she works as a teaching assistant. She typed in “ha ha ha ha” expecting a robotic response. To her surprise, it sounded like her old laugh.

She’s used it at Target and Marshall’s to ask where to find items. It’s helped her reconnect with her dad. And it’s made it easier for her to order fast food.

Bogan’s doctors have started cloning the voices of other willing Rhode Island patients and hope to bring the technology to hospitals around the world. OpenAI said it is treading cautiously in expanding the use of Voice Engine, which is not yet publicly available.

A number of smaller AI startups already sell voice-cloning services to entertainment studios or make them more widely available. Most voice-generation vendors say they prohibit impersonation or abuse, but they vary in how they enforce their terms of use.

“We want to make sure that everyone whose voice is used in the service is consenting on an ongoing basis,” said Jeff Harris, OpenAI’s lead on the product. “We want to make sure that it’s not used in political contexts. So we’ve taken an approach of being very limited in who we’re giving the technology to.”

Harris said OpenAI’s next step involves developing a secure “voice authentication” tool so that users can replicate only their own voice. That might be “limiting for a patient like Lexi, who had sudden loss of her speech capabilities,” he said. “So we do think that we’ll need to have high-trust relationships, especially with medical providers, to give a little bit more unfettered access to the technology.”

Bogan has impressed her doctors with her focus on thinking about how the technology could help others with similar or more severe speech impediments.

“Part of what she has done throughout this entire process is think about ways to tweak and change this,” Mirza said. “She’s been a great inspiration for us.”

While for now she must fiddle with her phone to get the voice engine to talk, Bogan imagines an AI voice engine that improves upon older remedies for speech recovery — such as the robotic-sounding electrolarynx or a voice prosthesis — in melding with the human body or translating words in real time.

She’s less sure about what will happen as she grows older and her AI voice continues to sound like she did as a teenager. Maybe the technology could “age” her AI voice, she said.

For now, “even though I don’t have my voice fully back, I have something that helps me find my voice again,” she said.
…

mbale, uganda — Barbara Nabulo was one of three girls in her family. But when a sister died, her mother wailed at the funeral that she was left with just one and a half daughters.

The half was the ailing Nabulo, who at age 12 understood her mother’s meaning.

“I hated myself so much,” Nabulo said recently, recalling the words that preceded a period of sickness that left her hospitalized and feeding through a tube.

The scene underscores the lifelong challenges for some people with sickle cell disease in rural Uganda, where it remains poorly understood. Despite Nabulo’s knowledge of how the disease weakens the body, she spoke repeatedly of “the germ I was born with.”

Infections, pain, organ damage

Sickle cell disease is a group of inherited disorders in which red blood cells — normally round — become hard, sticky and crescent shaped. The misshapen cells clog the flow of blood, which can lead to infections, excruciating pain, organ damage and other complications.

The disease, which can stunt physical growth, is more common in malaria-prone regions, notably Africa and India, because carrying the sickle cell trait helps protect against severe malaria. Global estimates of how many people have the disease vary, but some researchers put the number between 6 million and 8 million, with more than 5 million living in sub-Saharan Africa.

The only cure for the pain sickle cell disease can cause is a bone marrow transplant or gene therapies such as the one commercially approved by the U.S. Food and Drug Administration in December. Last week, a 12-year-old boy last week became the first person to begin the therapy.

Those options are beyond the reach of most patients in this East African nation, where sickle cell disease is not a public health priority despite the burden it places on communities. There isn’t a national database of sickle cell patients. Funding for treatment often comes from donor organizations.

A patient, a caregiver

In a hilly part of eastern Uganda that’s a sickle cell hot spot, the main referral hospital looks after hundreds of patients arriving from nearby villages to collect medication. Many receive doses of hydroxyurea, a drug that can reduce periods of severe pain and other complications, and researchers there are studying its effectiveness in Ugandan children.

Nabulo, now 37, is one of the hospital’s patients. But she approaches others like her as a caregiver, too.

After dropping out in primary school, she has emerged in recent years as a counselor to fellow patients, speaking to them about her survival. Encouraged by hospital authorities, she makes weekly visits to the ward that has many children watched over by exhausted-looking parents.

Nabulo tells them she was diagnosed with sickle cell disease at 2 weeks old, but now she is the mother of three children, including twins.

Such a message gives hope to those who feel discouraged or worry that sickle cell disease is a death sentence, said Dr. Julian Abeso, head of pediatrics at Mbale Regional Referral Hospital.

Some men have been known to divorce their wives — or neglect them in search of new partners — when they learn that their children have sickle cell disease. Frequent community deaths from disease complications reinforce perceptions of it as a scourge.

Health workers encourage testing

Nabulo and health workers urge openness and the testing of children for sickle cell as early as possible.

Abeso and Nabulo grew close after Nabulo lost her first baby hours after childbirth in 2015. She cried in the doctor’s office as she spoke of her wish “to have a relative I can call mine, a descendant who can help me,” Abeso recalled.

“At that time, people here were so negative about patients with sickle cell disease having children because the complications would be so many,” the doctor said.

Nabulo’s second attempt to have a child was difficult, with some time in intensive care. But her baby is now a 7-year-old boy who sometimes accompanies her to the hospital. The twin girls came last year.

Speaking outside the one-room home she shares with her husband and children, Nabulo said many people appreciate her work despite the countless indignities she faces, including unwanted stares from people in the streets who point to the woman with “a big head” — a manifestation of the disease in her. Her brothers often behave as if they are ashamed of her, she said.

Once, she heard of a girl in her neighborhood whose grandmother was making frequent trips to the clinic over an undiagnosed illness in the child. The grandmother was hesitant to have the girl tested for sickle cell when Nabulo first asked her. But tests later revealed the disease, and now the girl receives treatment.

“I go to Nabulo for help because I can’t manage the illness affecting my grandchild,” Kelemesiya Musuya said. “She can feel pain, and she starts crying, saying, ‘It is here and it is rising and it is paining here and here.'”

Musuya sometimes seeks reassurance. “She would be asking me, ‘Even you, when you are sick, does it hurt in the legs, in the chest, in the head?’ I tell her that, yes, it’s painful like that,” Nabulo said.

Nabulo said she was glad that the girl, who is 11, still goes to school.

The lack of formal education is hurtful for Nabulo, who struggles to write her name, and a source of shame for her parents, who repeatedly apologize for letting her drop out while her siblings studied. One brother is now a medical worker who operates a clinic in a town not far away from Nabulo’s home.

“I am very happy to see her,” said her mother, Agatha Nambuya.

She recalled Nabulo’s swelling head and limbs as a baby, and how “these children used to die so soon.”

But now she knows of others with sickle cell disease who grew to become doctors or whatever they wanted to be. She expressed pride in Nabulo’s work as a counselor and said her grandchildren make her feel happy.

“At that time,” she said, recalling Nabulo as a child, “we didn’t know.”
…