The 19-year-old has sickle cell disease, a genetic blood disorder. Her medicine ran out weeks ago.
Gond’s social worker, Geeta Aayam, nods as she bustles around Gond. She has the same disease — but, with better care, leads a very different life.
Hundreds of millions of rural Indians struggle to access care for a simple reason: The country just doesn’t have enough medical facilities.
India’s population has quadrupled since its independence in 1947, and an already fragile medical system has been stretched too thin: In the country’s vast countryside, health centers are rare, understaffed and sometimes run out of essential medicines. For hundreds of millions of people, basic health care means a daunting journey to a distant government-run hospital.
Such inequities aren’t unique to India, but the sheer scale of its population — it will soon overtake China, making it the world’s largest country — widens these gaps. Factors ranging from identity to income have cascading effects on health care, but distance is often how inequities manifest.
What that means for people with chronic problems like sickle cell disease is that small differences in luck can be life-changing.
Gond’s sickle cell disease was diagnosed late, and she often doesn’t have access to medicine that keeps the illness under control and reduces her pain. Because of the pain, she can’t work, and that further reduces her access to care.
Like Gond, Aayam was born into an Indigenous farming family in central India’s Chhattisgarh state, but before her pain began she finished her studies and began working for the public health nonprofit Sangwari in the city.
Older, educated and working alongside doctors, she was diagnosed promptly and received treatment. That allowed her to keep the disease under control, hold a job and get consistent care.
India’s rural health system has weakened from neglect in past decades, and as health workers gravitated towards better-paying jobs in big cities.
India spent only 3.01 percent of its gross domestic product on health in 2019, less than China’s 5.3 percent and even neighboring Nepal’s 4.45 percent, according to the World Bank.
In Chhattisgarh, which is among India’s poorest states and also has a significant Indigenous population, there’s about one doctor for every 16,000 people. By comparison, the urban capital of New Delhi has one doctor for around every 300 people.
“Poor people get poor health care,” said Yogesh Jain, a public health specialist at Sangwari, which promotes health care access in rural India.
Gond, 19, saw her life go off track early. Her mother died because of sickle cell disease when she was 6, and the young woman dropped out of school at 14 to help at home. She needed frequent blood transfusions to manage the illness, forcing her to undertake the difficult journey to the district hospital.
But as her pain worsened, she couldn’t even get out of bed. In 2021, she needed surgery when bone tissue in her hip died, starved of oxygen. She can no longer walk, sit or sleep without pain. Most days, she pulls the plastic chair where she spends hours to the doorway and looks out as the world passes her by.
Her former schoolmates are in college now and she wishes was with them.
“All I feel is anger. It eats away at my insides,” she said.
Hydroxyurea, a pain-relieving drug that India approved in 2021 and provides for free, allows many patients to lead relatively normal lives, but Gond’s medicine ran out weeks ago and pharmacists in her village in Surguja district don’t have any.
When Gond gets on hydroxyurea for a few weeks, the pain gradually recedes, and she can move around more. But it often runs out, and the sprawling district has only one large government hospital for 3 million, mostly rural, inhabitants.
To get medicine from the hospital, Gond’s father would need to borrow a motorbike and skip a day’s work every month — a significant sacrifice for the family, which lives on less than a dollar a day.
When things get very bad, Gond calls Aayam, the social worker, who drives over with the drugs. But there are thousands of patients who can’t access health centers and Aayam can’t do this often.
Sickle cell is an inherited disease in which misshapen red blood cells can’t properly carry oxygen throughout the body. It can cause severe pain and organ damage and is commonly found in people whose families came from Africa, India, Latin America and parts of the Mediterranean.
In India, the disease is widely, but inaccurately, seen as only affecting the Indigenous population. Like many diseases associated with marginalized communities, it has long been neglected. India approved hydroxyurea for sickle cell disease two decades after the US
The government’s current strategy is to eliminate the disease by 2047. The plan is to screen 70 million at-risk people by 2025 to detect the disease early, while counseling those who carry the gene about the risks of marrying each other. But as of April it has only screened 2 percent of its 2023 target of 10 million people.
Experts warned that similar efforts have failed in the past. Instead, Jain, the public health specialist, argued for strengthening health systems so they can find, diagnose and treat the sick. If patients can’t get to the hospital, he asked, “can the health system to go the people?”
Some are trying. Bishwajay Kumar Singh, an official at the Ambikapur hospital, and Nandini Kanwar, a nurse with Sangwari, traveled three hours through forested hills to Dumardih village at the edge of the Surguja district.
Raghubeer Nagesh, a farmer, had brought his son Sujeet, 13, to the hospital the day before. The boy was losing weight steadily, and then one afternoon his leg felt like it was burning. Tests confirmed that he had sickle cell disease. His worried father told hospital officials that several other children in the village had similar symptoms.
In Dumaridh, Singh and Kanwar visited houses where people had symptoms, including one where a worried mother asked if the disease would stunt her child’s growth and another where a young man who plays music at weddings found out that his pain wasn’t just fatigue.
Efforts like this are dwarfed by the sheer scale of India’s population. Dumardih has a few thousand residents, making it a tiny village by Indian standards. But the two can only visit four or five homes in a single trip, testing about a dozen people with symptoms.
Again and again, Singh and Kanwar were asked the same question: Is there really no cure? Faces fell as painful calculations were made. A disease that can’t be cured means a lifelong reliance on an unreliable health system, personal expenses and sacrifices.
Kanwar said they would help make the medicines available nearby, but taking it daily was essential.
Crown Prince of Abu Dhabi meets with CEOs of leading Norwegian companies
H.H. Sheikh Khaled bin Mohamed bin Zayed Al Nahyan, Crown Prince of Abu Dhabi, has met with a group of CEOs from leading Norwegian companies, as part of their participation in the UAE-Norway Investment Forum, held alongside his official visit to the Kingdom of Norway.
During the meeting, H.H. Sheikh Khaled bin Mohamed bin Zayed underscored the UAE leadership’s commitment to strengthening economic cooperation with its international partners.
He highlighted that investment in innovation and knowledge is a cornerstone for achieving sustainable development, noting that enhancing collaboration with Norwegian companies across key sectors will open new avenues for mutual economic growth between the two countries.
The UAE-Norway Investment Forum, taking place in Oslo, aimed to highlight available investment opportunities and strengthen trade relations between the UAE and Norway, fostering shared interests and supporting innovation and knowledge-based economic visions.
At the Indonesia International Book Fair 2024, TRENDS inaugurates 10th global office, releases four books
As part of its Asian research tour, partnership with Aletihad News Center, and
primary sponsorship of the Indonesia International Book Fair 2024, TRENDS
Research & Advisory inaugurated its office in Jakarta, marking its 10th location
worldwide. It also released four books in Indonesian.
The inauguration event was attended by ambassadors of the UAE, Bahrain, and
Jordan to Indonesia, chairpersons of the UAE and Indonesian Publishers’
Associations, the Director of TRENDS’ Jakarta office, and a group of researchers
and academics.
Speaking at the event, Dr. Mohammed Abdullah Al-Ali, CEO of TRENDS
Research & Advisory, stated that TRENDS’ international offices—set to reach 15
by the end of 2024—aim to enhance the Center’s research efforts and deepen its
role in disseminating knowledge, thus serving as a global knowledge bridge.
He emphasized, “At TRENDS, we believe in the importance of cooperation
between think tanks and prioritize this endeavor. We believe the TRENDS office in
Jakarta will enhance the exchange of knowledge and ideas between think tanks in
Asia and the Middle East, opening new horizons for collaboration in various
fields.”
Four books in Indonesian
As part of the Jakarta office’s inaugural activities, four books were released in
Indonesian, including the 11th and 12th books of the Muslim Brotherhood
Encyclopedia and Global Trends in AI and Automation and the Future of
Competition between Man and Machine: An Analytical Forward-looking Vision.
Hostility to Arab states
The 11th book of the Muslim Brotherhood Encyclopedia, The Concept of the State
According to the Muslim Brotherhood, highlights its hostile stance toward Arab
states since its inception. The group views them as an obstacle to its ascent to
power. It opposed the modern principles upon which these states were built,
considering them incompatible with the group’s unique interpretation of Islam,
which it claimed to embody exclusively.
Exclusion of nonconformists
The 12th book, The Muslim Brotherhood: Rejection of Tolerance and Exclusion of
Nonconformists, examines the Muslim Brotherhood’s stance towards
nonconformists, individuals, and entities. The book reveals the group’s binary view
of the world, categorizing others as allies or adversaries. It ties these relationships
to the Brotherhood’s internal power struggles and self-serving interests.
Global Trends in AI
The third book, Global Trends in AI, explores significant developments in AI and
its impact on various aspects of life, including the economy, society, and
governance. It also offers a comprehensive analysis of technological advancements
in AI, its applications across sectors, the ethical and social challenges it presents,
and its future trajectory.
Automation
The fourth book, Automation and the Future of Competition between Man and
Machine: An Analytical Forward-looking Vision, addresses the growing challenges
faced by the human workforce in the face of widespread automation and AI
applications. The book concludes that while automation presents a significant
challenge to the labor market, it simultaneously creates new opportunities. It
emphasizes the importance of preparing for this shift through skills development,
continuous education, and adopting economic and social policies that support the
workforce.
Prominent pavilion and active presence
The TRENDS’ pavilion at the Indonesia International Book Fair has attracted
numerous visitors, including academic researchers and officials, such as the
ambassadors of the UAE, Bahrain, Qatar, Jordan, and Turkey. Additionally,
chairpersons of Arab and Indonesian publishers’ associations, authors, publishers,
and students visited the pavilion. All were impressed with and praised TRENDS’ diverse, valuable publications. They also commended TRENDS’ active
international presence and ability to address global developments with rigorous
analytical research.
Dr. Mohammed Abdullah Al-Ali honored the esteemed guests, including
ambassadors of the UAE and Bahrain to Indonesia, Wedha Startesti Yudha,
Chairperson of the Indonesia International Book Fair Committee, Arys Hilman
Nugraha, Chairman of the Indonesian Publishers Association, and others,
presenting them with TRENDS’ publications and commemorative shields.
Additionally, he awarded TRENDS’ Research Medal to Ni Made Ayu Martini
Indonesian Deputy Minister of Marketing, Tourism and Creative Economy
It is worth noting that during its current Asian research tour, TRENDS announced
the launch of the TRENDS Research Medal, awarded to individuals who make
significant contributions to the development of scientific research and promote collaboration with TRENDS in strengthening a culture of research across various fields.
US determined to prevent full-scale war in Middle East, Joe Biden tells UNGA79
US President Joe Biden highlighted the US Administration’s determination to prevent a wider war that engulfs the entire Middle East region, noting that a diplomatic solution “remains the only path to lasting security to allow the residents from both countries to return to their homes on the border safely”.
In remarks he made today before the 79th Session of the United Nations General Assembly (UNGA79), the US President said, “Full-scale war is not in anyone’s interest,” adding that a diplomatic solution is still possible.
He also touched on “the rise of violence against innocent Palestinians on the West Bank”, and the need to “set the conditions for a better future”, which he said featured “a two-state solution, where the world — where Israel enjoys security and peace and full recognition and normalised relations with all its neighbours, where Palestinians live in security, dignity, and self-determination in a state of their own”.
President Biden underscored the ceasefire and hostage deal put forth by Qatar and Egypt, which the UN Security Council endorsed. He said, “Now is the time for the parties to finalise its terms, bring the hostages home,” adding that this would help ease the suffering in Gaza, and end the war.