Global Affairs

Silence, stigma and unaffordable drugs: the Kenyan woman finding sickle cell solutions | Global development

For Lea Kilenga, life seemed normal until a new boy at her school encouraged other children not to sit next to her. The incident was her first realisation that there was a stigma to living with sickle cell disease.

Like her two sisters, Kilenga was diagnosed with the genetic blood condition in early childhood. The disease changes the shape of red blood cells from round to crescent-shaped. These cells then stick together, causing blood clots, intense pain and anaemia. The condition mainly affects people of African or Caribbean heritage.

Lea Kilenga, the founder and executive director of Africa Sickle Cell Organization. — Kilenga has since become a successful advocate for the disease in Kenya, where nearly 14,000 children are born with the condition every year. Photograph: Koyanga Bey/Courtesy of Lea Kilenga

Because Kilenga wasn’t the only one in her family dealing with “sleepless nights and night-long cries”, she thought “taking daily medicine, seeing the doctor every two weeks and undergoing routine blood transfusions were all normal for every child”.

“Until the day a boy in my class, who was new, mentioned that I was peculiar and contagious,” says Kilenga, 33. “Despite efforts to make myself seem not so different, I couldn’t hide my jaundice and distended stomach and skinny body. Many of my classmates bought into the narrative, and soon no one wanted to associate with me, sit with me or touch me. I didn’t go to school for three months after this.”

Her self-esteem bruised, she went through a period of “destructive behaviour” and was admitted to hospital multiple times with alcohol and drug overdoses. She managed to turn herself around in university.

Quick Guide

A common condition

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The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.

NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80% are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.

NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.

Investment in tackling these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.

In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.

‘A common condition’ is a new Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.

Tracy McVeigh, editor

Kilenga has become a successful advocate for those living with the disease in Kenya, where nearly 14,000 children are born with the condition every year. Named Kenya’s SCD champion by the ministry of health and NCD Alliance Kenya in 2016, her work began two years before with a photography project “to prove there were more of us”. She photographed 400 people.

“I was inspired by the stories and the people living with SCD – both patients and caregivers. It was a silent disease in that no one spoke about it for fear of stigma,” she says.

Half of the people Kilenga met had no access to pain medication, even though, as she says, “pain is universal and relative”.

“Everyone has pain to varying degrees, but not everyone will understand your pain unless they experience it to the level you do.”

From Lea Kilenga’s 10003 Warrior Project. Photograph: Courtesy of Lea Kilenga

The drug hydroxyurea, commonly used to prevent sickle-shaped blood cells from forming, was approved for treatment in Kenya in the past decade and is the most affordable option to manage the symptoms, although “it does not work for everyone and the term ‘affordable’ is a stretch”, says Kilenga.

Only 5% of the people she photographed had seen a health professional, and most had received multiple misdiagnoses.

Kilenga learned how “people with sickle cell, especially those in rural areas, largely self-medicated with herbs and traditional remedies due to lack of access to sickle cell care”.

Her discoveries contributed to the establishment of national SCD care guidelines. Most children with the severest form do not survive beyond the age of five. Kilenga’s sister died in childhood.

In 2017, Kilenga set up the Africa Sickle Cell Organisation to raise awareness and get better care for patients in resource poor, high burden areas, such as the coastal city of Taita-Taveta, where Kilenga lives.

Manjusha Chatterjee, from NCD Alliance, called Kilenga a trailblazer.

“Lea has championed the destigmatisation of her condition and NCDs more broadly to ensure more awareness of rarer NCDs and tackle the social taboos surrounding them.”

Painful sickle cell episodes affected her more in her teens and 20s, but Kilenga can sometimes find herself in the emergency department when they strike, needing strong pain relief.

Her vision is to make sickle cell disease a global health priority. “My message to people with sickle cell is there’s no saviour coming. We’ve had 100-plus years to wait for them, they have not shown up to make significant change for us. So we must make this change for ourselves and others like us.”

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Chemistry Problems & Quantum Computing

The researchers compared the results of a conventional and quantum computer to minimise error calculations, which could eventually be scaled up to solve more complicated problems.

Scientists in Sweden have successfully managed to use a quantum computer to solve simple chemistry problems, as a proof-of-concept for more advanced calculations.

Currently, conventional supercomputers are used in quantum chemistry to help scientists learn more about chemical reactions, which materials can be developed and the characteristics they have.

But these conventional computers have a limit to the calculations they can handle. It is believed quantum computers will eventually be able to handle extremely complicated simulations, which could lead to new pharmaceutical discoveries or the creation of new materials.

However, these quantum machines are so sensitive that their calculations suffer from errors. Imperfect control signals, interference from the environment and unwanted interactions between quantum bits – qubits – can lead to “noise” that disrupts calculations.

The risk of errors grows as more qubits are added to a quantum computer, which complicates attempts to create more powerful machines or solve more complicated problems.

Comparing conventional and quantum results

In the new study by Chalmers University, scientists aimed to resolve this noise issue through a method called reference-state error mitigation.

This method involves finding a “reference state” by describing and solving the same problem on both a conventional and a quantum computer.

The reference state is a simpler description of a molecule that can be solved by a normal computer. By comparing the results from both computers, the scientists were able to estimate the scale of error the quantum computer had in its calculation.

The difference between the two computers’ results for the simpler reference problem was then applied to correct the quantum computer’s solution for the original, more complex problem.

This method allowed the scientists to calculate the intrinsic energy of small example molecules such as hydrogen on the university’s quantum computer.

Associate professor Martin Rahm – who led the study – believes the result is an important step forward that can be used to improve future quantum-chemical calculations.

“We see good possibilities for further development of the method to allow calculations of larger and more complex molecules, when the next generation of quantum computers are ready,” Rahm said.

Research is happening around the world to fix the problems limiting the development of more advanced quantum computers.

Earlier this month, Tyndall’s Prof Peter O’Brien told about his group’s work in addressing a key challenge in quantum technology and how quantum communications will make eavesdropping ‘impossible’.

Culture

A Chilling Resurgence Of The “Vampire Fish” In The Great Lakes

The notorious sea lamprey, a creepy parasitic fish, resurges in the Great Lakes, wreaking havoc on native species.

The Creepy Invader Emerges

In the eerie waters of the Great Lakes, a parasitic fish has emerged from the depths, thriving on a bloodsucking mission. Meet the sea lamprey, a creature with a haunting circular row of teeth, a serrated tongue, and an eel-like shape. Native to the northern and western Atlantic Ocean, this nightmarish creature invaded the Great Lakes in the early 19th century through the Welland Canal, which links Lake Ontario and Lake Erie. Once it infiltrated the pristine waters, the lamprey set about its insidious predation on commercially important fish, including trout, whitefish, perch, and sturgeon. The consequences were catastrophic.

A Century of Devastation

Within a mere decade, the sea lamprey gained access to all five Great Lakes, leaving a trail of destruction in its wake. Its unchecked proliferation led to the collapse of the once-thriving trout fishery within a century. By the 1960s, the lamprey had inflicted such damage that the annual commercial catch of lake trout in the upper Great Lakes plummeted from around 15 million pounds to a meager half a million pounds.

A Battle Against the Vampire Fish

Recognizing the urgency of the situation, the Great Lakes Fishery Commission, alongside the US Fish and Wildlife Service and Fisheries and Oceans Canada, took up arms against this highly invasive species. With ardent determination, they sought to manage and reduce the sea lamprey population, and their efforts yielded significant success. The fishery commission proudly boasts on its website that sea lamprey populations have been diminished by a staggering 90 percent in most areas of the Great Lakes.

The “vampire fish” sea lamprey makes a chilling comeback, threatening the delicate balance of the Great Lakes’ aquatic life.

The Pandemic’s Interruption

However, as the world grappled with the COVID-19 pandemic, the agencies’ crucial operations to control the lamprey’s resurgence suffered a chilling interruption. With travel restrictions in place and resources stretched thin, fishery managers faced daunting challenges. The pandemic’s insidious impact reached the heart of the Great Lakes, allowing the parasitic fish to take advantage of the hiatus.

The Reemergence

As restrictions eased and operations resumed, a grim revelation awaited the fishery managers. The parasitic fish had cunningly exploited the opportunity, and their population began to creep back across the Great Lakes. Reports from the Wall Street Journal indicated that the sea lamprey population had resurged, sending shivers down the spines of those who witnessed its wrath in the past.

Lampreys belong to the superclass Cyclostomata and represent the most ancient group of vertebrates. Existing for over 360 million years, they are known as living fossils due to their many evolutionally conserved features

A Fragile Balance

Exact figures of the resurgence remain uncertain, but the implications are undeniably ominous. According to a 2022 report by Undark Magazine, crews responsible for population control were only able to treat about 25 percent of the target streams in 2020, leaving the lamprey unchecked. The following year saw a partial recovery, as the teams reached 75% of their targets. Nevertheless, the challenge remains enormous, and the careful application of pesticides called lampricides is essential to reduce the lamprey population.

After pandemic disruptions, the sea lamprey population surges, posing a formidable challenge for conservationists in the Great Lakes.

The Cost of Confrontation

The battle against the lamprey is not merely a spooky tale—it comes with a substantial price tag. Controlling this aquatic menace is estimated to cost around $15 to $20 million annually, reflecting the magnitude of the threat it poses to the Great Lakes ecosystem.

Joining the Fight

As the resurgence of the “vampire fish” casts a shadow over the Great Lakes, the need for decisive action becomes evident. Stakeholders must unite in their mission to protect the delicate balance of this vital ecosystem. The battle against the sea lamprey requires collective effort and resources, with innovative approaches to safeguarding the region’s rich biodiversity.

A Race Against Time

With the sinister sea lamprey gaining ground, time is of the essence. As this dark chapter unfolds, the eyes of the world are on the Great Lakes, waiting to witness the outcome of this gripping struggle. The clock is ticking, and the stakes have never been higher.

Seizing the Opportunity

For environmental advocates, researchers, and those invested in the well-being of the Great Lakes, the resurgence of the “vampire fish” serves as a chilling reminder of the fragility of our ecosystems.

Embracing sustainable practices, collaborative efforts, and innovative solutions, there is hope that the Great Lakes can once again emerge victorious against this formidable foe.

A Battle for the Ages

As the lamprey saga continues, it will be a tale of resilience, perseverance, and the relentless pursuit of balance. The world holds its breath, awaiting the final chapter in this eerie narrative—a chapter that will determine the fate of one of North America’s most treasured aquatic ecosystems.

Contact us now to learn how you can support the battle against the “vampire fish” and join the ranks of those committed to preserving the Great Lakes for generations to come. Let your voice be heard in this harrowing tale of nature’s tenacity and mankind’s dedication.

We Can’t Thank You Enough For Your Support!

— Compiled by Independents for VoiceOfEU.com

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The Implications Of Controlling High-Level Artificial Super Intelligence (ASI)

Artificial Super Intelligence (ASI)

By Clint Bailey | ‘The Voice of EU’

The notion of artificial intelligence surpassing humanity has long been a topic of discussion, and recent advancements in programs have reignited concerns. But can we truly control super-intelligence? A closer examination by scientists reveals that the answer is highly unlikely.

Unraveling The Challenge:

Controlling a super-intelligence that surpasses human comprehension necessitates the ability to simulate and analyze its behavior. However, if we are unable to comprehend it, creating such a simulation becomes an impossible task. This lack of understanding hinders our ability to establish rules, such as “cause no harm to humans,” as we cannot anticipate the scenarios that an AI might generate.

The Complexity Of Super-Intelligence:

Super-intelligence presents a distinct challenge compared to conventional robot ethics. Its multifaceted nature allows it to mobilize diverse resources, potentially pursuing objectives that are incomprehensible and uncontrollable to humans. This fundamental disparity further complicates the task of governing and setting limits on super-intelligent systems.

Drawing Insights From The Halting Problem:

Alan Turing’s halting problem, introduced in 1936, provides insights into the limitations of predicting program outcomes. While we can determine halting behavior for specific programs, there is no universal method capable of evaluating every potential program ever written. In the realm of artificial super-intelligence, which could theoretically store all possible computer programs in its memory simultaneously, the challenge of containment intensifies.

The Uncontainable Dilemma:

When attempting to prevent super-intelligence from causing harm, the unpredictability of outcomes poses a significant challenge. Determining whether a program will reach a conclusion or continue indefinitely becomes mathematically impossible for all scenarios. This renders traditional containment algorithms unusable and raises concerns about the reliability of teaching AI ethics to prevent catastrophic consequences.

The Limitation Conundrum:

An alternative approach suggested by some is to limit the capabilities of super-intelligence, such as restricting its access to certain parts of the internet or networks. However, this raises questions about the purpose of creating super-intelligence if its potential is artificially curtailed. The argument arises: if we do not intend to use it to tackle challenges beyond human capabilities, why create it in the first place?

READ: ALL ABOUT ARTIFICIAL INTELLIGENCE

Urgent Reflection – The Direction Of Artificial Intelligence:

As we push forward with artificial intelligence, we must confront the possibility of a super-intelligence beyond our control. Its incomprehensibility makes it difficult to discern its arrival, emphasizing the need for critical introspection regarding the path we are treading. Prominent figures in the tech industry, such as Elon Musk and Steve Wozniak, have even called for a pause in AI experiments to evaluate safety and potential risks to society.

The potential consequences of controlling high-level artificial super-intelligence are far-reaching and demand meticulous consideration. As we strive for progress, we must strike a balance between pushing the boundaries of technology and ensuring responsible development. Only through thorough exploration and understanding can we ensure that AI systems benefit humanity while effectively managing their risks.

We Can’t Thank You Enough For Your Support!

— By Clint Bailey, Team ‘THE VOICE OF EU‘

— For Information: Info@VoiceOfEU.com

— For Anonymous News Submissions: Press@VoiceOfEU.com