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    My rare disease was getting closer to a cure. RFK Jr could undermine that | Jameson Rich

    Since Robert F Kennedy Jr assumed control of the US health department in February, with a mandate to “[lower] chronic disease rates and [end] childhood chronic disease”, he has moved quickly to remake the US’s federal health infrastructure. But the Trump administration’s actions on medical research are already threatening that goal – and could end medical progress in this country for good.Kennedy’s office oversees the National Institutes of Health, the control center of disease research in the United States. Kennedy’s agency has killed almost 800 active projects, according to Nature, affecting medical research into HIV/Aids, diabetes, women’s health, heart disease, cancer, Alzheimer’s and more. The administration wants to cut the NIH’s budget up to 40% while consolidating its 27 agencies – separated by disease area – into just eight. Elon Musk’s Doge has been reviewing previously awarded grant funding, reportedly requiring researchers to explain how they are using their grants to advance the Trump administration’s political goals. (Audio obtained by the Washington Post suggests this “Defend the Spend” initiative may be a smokescreen, with one NIH official admitting: “All funding is on hold.”) Separately, Donald Trump has aggressively targeted universities such as Harvard and Columbia over alleged antisemitism and diversity initiatives, using federal contracts that fund research as leverage. And just recently, the NIH passed a new rule banning any university from receiving future federal grants if the universities use DEI programs or boycott Israeli firms.Medical research is a wonkish issue usually kept far away from political discussions. Even popular initiatives like former presidents Barack Obama and Joe Biden’s cancer moonshot require long-term vision in a political landscape rarely concerned with anything beyond the day’s news. But in recent years, public and private investments in medical research have seeded a wave of potential cures across major disease areas. Now, just as that wave is about to crest, RFK Jr and the Trump administration’s incursion against the NIH threatens to ensure these cures are never finished.For me, the promise of those cures is personal. At three days old, I was diagnosed with a rare version of the most common type of birth defect: congenital heart disease. CHD affects one in every 100 babies born in the US and is the leading cause of birth defect-related deaths. Congenital heart problems can range from a small hole in the heart to being born with only one ventricle. Many defects are underdiagnosed, and chances are good that you know somebody who lives with one. Even JD Vance does: his relative was born with Ebstein’s anomaly, a deformity of the tricuspid valve that has resulted in her now needing a heart transplant at the age of 12.When I was six weeks old, doctors performed the first in a series of three surgeries aimed at correcting the circulation of blood within my heart and between the other organs of my body. The final surgery in that sequence had first been described in medical journals in 1971, and crucial refinements had been made only a few years before I was brought under the knife.Before the surgery’s advent, the prognosis was grim. Many children like me died before their first birthday. Of congenital patients in the 1950s, “half died before the age of twenty”, writes cardiologist Sandeep Jauhar in his book Heart: A History. “In short, they were cardiac cripples, their existence doomed.” But after the surgery, more of us started living into adulthood. Today, most of these patients live at least another 30 years after the operation. My survival past infancy was an accident of history, the product of being born at the right moment in the lifespan of medical research. “Don’t worry,” my first surgeon told my parents when I was a child. “He’s going to long outlive you both.”But my future and the future of others like me is not guaranteed. As I grew up, my doctors acknowledged that the surgery was merely palliative, not curative – a stopgap, medicine’s way of buying me some time. With medicine advancing so quickly, though, we could hope that new solutions would be brought into existence by the time I needed them. In the decades since, we have come to understand the surgery’s long-term consequences: likely progressive damage across organ systems, leading to the need for heart or multi-organ transplants in most patients by the age of 40. Last year, shortly after turning 31, I was formally diagnosed with cardiac cirrhosis and informed that I will need a combined heart-liver transplant within the decade. The time that those early developments bought me seems to be running out.In recent years, as the patient population has grown, more of us have been able to advocate for the need for new solutions. Private foundations have started pouring tens of millions of dollars into research aimed at discovering new treatments and identifying the root causes of birth heart defects so they can be prevented. These foundations have also begun correcting an imbalance in funding – historically, pediatric cancer has received five times the amount of funding that CHD does, despite similar prevalence and mortality rates.I volunteer on the patient board of one such organization, a privately funded non-profit aimed at curing heart defects like mine. With the help of researchers and hospital systems across the country, the organization has been making remarkable progress in a short period of time. But this work relies on the infrastructure of university labs. Even before Kennedy took office, the Trump administration ordered that the NIH change how grant funding is allocated by limiting what are known as “indirect costs”, which go beyond the direct needs of a given study. But often, these costs go into funds that help universities keep their labs running: things like building operations and upgrades, legal compliance and paying researchers. Even with this support, university labs struggle to keep the lights on, and researchers are constantly fighting to secure and retain funding. (The order has since been paused by a federal judge and is the subject of continuing litigation.)Some insist the US shouldn’t be funding research with taxpayer dollars at all. Instead, they would leave the task to pharmaceutical companies and biotech firms. But this fundamentally misunderstands the reality: in the decade leading up to 2020, researchers found, government funding played a role in the development of every new pharmaceutical drug; these drugs are then sold back to patients at a premium. The research that for-profit companies do fund is narrowly focused on things that are guaranteed to make money, or to advance discoveries begun in the public sector. For example, the new blockbuster medication category of GLP-1s – Ozempic, Wegovy, Mounjaro – would not exist without a discovery that was first made by an NIH scientist. When people debate the American healthcare system, they often point to the innovations and cutting-edge treatments we’ve pioneered to support the idea that our system, while flawed, is the best in the world. That impression of a world-class system is due almost entirely to the quality and breadth of our university research infrastructure and our medical schools.Private non-profits, like the one I volunteer with, already fund a large amount of medical research. If more university labs start closing, there will be nowhere for this money to go or for this research to be performed. As Dr Kimryn Rathmell, former director of the National Cancer Institute, told the AP: “Discoveries are going to be delayed, if they ever happen.” The result will be both patients and the government spending even more money on emergency and palliative healthcare. That will only benefit the healthcare profiteers Kennedy claims to be going after: pharmaceutical companies, hospital systems and healthcare entrepreneurs such as Brad Smith, who, by some accounts, has been leading Doge’s firings within HHS.My disease isn’t the only one that will be affected by these cuts. Ongoing research has indicated that targeted mRNA vaccines may show promise in preventing or treating Aids and certain types of cancers. The technology is also being studied for its ability to treat cystic fibrosis, heart failure, sickle cell anemia and other genetic birth defects. But scientists working in these areas through the NIH have already been instructed to strike mention of mRNA vaccines from grant applications and materials, perhaps owing to Kennedy’s hostility towards vaccines and his repeated lies about mRNA technology.If the proposed funding cuts and changes at the NIH are allowed to proceed, Kennedy’s mandate to lower chronic disease rates will fail, and his failure will be obvious. We will see it in rising rates of cancer, birth defects, diabetes and other chronic illnesses. We will see it in the exodus of medical experts to other countries, and the collapse of the researcher pipeline in US universities. We will see the quality of our supposed world-class medical system crash as treatments stagnate. We will pay for this cruelty in blood and lives and lost generations.In truth, today’s congenital heart research has arrived too late to save my own life. My future is at the whim of our broken transplant system, itself already showing signs of strain under Kennedy. But I continue championing the work being done because of the hope that future children won’t be consigned to the same fate. The only thing that will have made the suffering I’ve faced worth it is if I’m a part of the last generation to do so.

    Jameson Rich is a writer and film-maker from Massachusetts who covers healthcare and culture More

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    Trump makes sweeping HIV research and grant cuts: ‘setting us back decades’

    The federal government has cancelled dozens of grants to study how to prevent new HIV infections and expand access to care, decimating progress toward eliminating the epidemic in the United States, scientists say.The National Institutes of Health (NIH) terminated at least 145 grants related to researching advancements in HIV care that had been awarded nearly $450m in federal funds. The cuts have been made in phases over the last month.NIH, a division of the Department of Health and Human Services, is the largest funding source of medical research in the world, leaving many scientists scrambling to figure out how to continue their work.“The loss of this research could very well result in a resurgence of HIV that becomes more generalized in this country,” said Julia Marcus, a professor at Harvard Medical School who recently had two of her grants cancelled. “These drastic cuts are rapidly destroying the infrastructure of scientific research in this country and we are going to lose a generation of scientists.”In 2012, the FDA approved pre-exposure prophylaxis (PrEP), an antiviral drug taken once a day that is highly successful at preventing new HIV infections. While the drug has been a powerful tool to contain the virus, inequities remain in accessing those drugs and sustaining a daily treatment. Despite major progress, there are still 30,000 new infections each year in the US.Many of the terminated HIV-related studies focused on improving access to drugs like PrEP in communities that have higher rates of infections – including trans women and Black men. One of Marcus’s projects was examining whether making PrEP available over the counter would increase the use of the drug in vulnerable communities.“The research has to focus on the populations that are most affected in order to have an impact and be relevant,” said Marcus.Yet, this may be the justification for defunding so many HIV-related studies. A termination letter reviewed by the Guardian dated 20 March cited that “so-called diversity, equity and inclusion (DEI) studies are often used to support unlawful discrimination on the basis of race and other protected characteristics, which harms the health of Americans.”The National Institutes of Health did not expand on why the grants were terminated in response to questions from the Guardian. In a statement it said it is “taking action to terminate research funding that is not aligned with NIH and HHS priorities. We remain dedicated to restoring our agency to its tradition of upholding gold-standard, evidence-based science.”Many researchers were left stunned by the scale of the cancellations since in 2019, Donald Trump announced in his State of the Union address a commitment to eliminate the HIV epidemic in the country over the next 10 years. As part of this initiative, his administration negotiated a deal with drug companies to provide free PrEP for 200,000 low-income patients.“Scientific breakthroughs have brought a once-distant dream within reach,” said Trump in his address. “Together we will defeat Aids in America.”Amy Nunn, a professor at the Brown University School of Public Health, said she had even tailored grant proposals to fit the policy goals of the initiative, which included geographically targeting HIV prevention efforts. One of her studies that was terminated focused on closing disparities of PrEP use among African American men in Jackson, Mississippi.“They finally adopted those policies at the federal level,” Nunn said, noting that Trump was the first president to make ending the epidemic a priority. “Now they’re undercutting their own successes. It’s so strange.”Though hundreds of millions of dollars in federal funds had been awarded for the grants, the terminations will not recoup all of that money for the administration, since many are years into their work. Some are even already finished.Nathaniel Albright learned earlier this month that an NIH grant supporting his doctoral research was cancelled even though his project had already been completed. A PhD candidate at Ohio State University, Albright is defending his dissertation at the end of the month. Still, Albright is concerned how the cuts impact the future of the field.“It’s created an environment in academia where my research trajectory is now considered high risk to institutions,” said Albright, who is currently struggling to find postdoctorate positions at universities.Pamina Gorbach, an epidemiologist who teaches at University of California, Los Angeles, had been following hundreds of men living with HIV in Los Angeles for 10 years to learn their needs. She had been awarded an NIH grant to better facilitate their treatment through a local clinic. Her funding was cancelled earlier this month as well.“It’s really devastating,” said Gorbach. “If you’re living with HIV and you’re not on meds, you know what happens? You get sick and you die.”Clinic staff in Los Angeles will likely be laid off as a result of the cuts, said Gorbach. Others agreed one immediate concern was how to pay their research staff, since the funds from a grant are immediately frozen once it is terminated. The NIH funds also often make up at least a portion of university professor’s salaries, all said they were most alarmed by the impact on services for their patients and the loss of progress toward ending the epidemic.“This is erasing an entire population of people who have been impacted by an infectious disease,” said Erin Kahle, the director of the Center for Sexuality and Health Disparities at the University of Michigan who lost an NIH grant.Scrapping an entire category of disease from research will have innumerable downstream effects on the rest of healthcare, she added.“This is setting us back decades,” said Kahle. More

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    ‘It’s back to drug rationing’: the end of HIV was in sight. Then came the cuts

    This year the world should have been “talking about the virtual elimination of HIV” in the near future. “Within five years,” says Prof Sharon Lewin, a leading researcher in the field. “Now that’s all very uncertain.”Scientific advances had allowed doctors and campaigners to feel optimistic that the end of HIV as a public health threat was just around the corner.Then came the Trump administration’s abrupt cuts to US aid funding. Now the picture is one of a return to the drugs rationing of decades ago, and of rising infections and deaths.But experts are also talking about building a new approach that would make health services, particularly those in sub-Saharan Africa, less vulnerable to the whims of a foreign power.The US has cancelled 83% of its foreign aid contracts and dismantled USAid, the agency responsible for coordinating most of them.Many fell under the President’s Emergency Plan for Aids Relief (Pepfar) programme, which has been the backbone of global efforts to tackle HIV and Aids, investing more than $110bn (£85bn) since it was founded in 2003 and credited with saving 26 million lives and preventing millions more new infections. In some African countries it covered almost all HIV spending.View image in fullscreenThere is a risk, says Lewin, director of Melbourne University’s Institute for Infection and Immunity and past president of the International Aids Society, of “dramatic increases in infections, dramatic increases in death and a real loss of decades of advances”.There is no official public list of which contracts have been cancelled, and which remain. It appears that virtually no HIV-prevention programmes funded by the US are still in operation, save a handful principally providing drugs to stop pregnant women passing on the infection to their babies. Countries report disruption to the most basic measures, such as condom distribution.Some treatment programmes have been spared, but not those whose focus conflicted with the Trump administration’s war on “gender ideology” or diversity, equity and inclusion (DEI), such as those working with transgender communities. Doctors, nurses and other healthcare workers have been laid off, while worried patients are hoarding drugs or stretching supplies, according to UNAids surveillance. UNAids itself has lost more than half of its funding.Even programmes that have survived the cull have faced turmoil since February, with instructions to stop work rescinded but with no certainty that funding will continue.View image in fullscreenIn only one example, the Elizabeth Glaser Paediatric Aids Foundation says it has had to halt HIV treatment for 85,000 people in Eswatini, including more than 2,000 children, and tests for thousands of pregnant women and babies to prevent transmission and begin life-saving medication.Access to drugs represents an “immediate crisis”, Lewin says. “If people with HIV stop the medications, then not only do they get sick themselves, which is tragic, but they also then become infectious to others.”As clinics on the frontline of treating the disease scrabble to secure access to basic drugs, scientists at this month’s Conference on Retroviruses and Opportunistic Infections in San Francisco were hearing that HIV might soon be preventable with a once-a-year injection.The drug lenacapavir was already generating huge excitement in the field, after trial results showed that a six-monthly jab could prevent HIV. New results from the manufacturer Gilead suggest that a tweak to the formula and how it is given could see its protective effects last even longer.Nevertheless, Lewin says, the mood at the meeting, packed with many of the world’s leading HIV specialists, was “dire”.As well as programme cancellations, there are “huge concerns around science and what’s going to happen to the [US] National Institutes of Health, [whose] funding of science has been so significant on every level”, she says.Some scientists in receipt of US funding have been told to remove their names from DEI-linked research, she says, even though DEI is fundamental to the HIV response.View image in fullscreen“I don’t mean that in a sort of touchy-feely way, I mean that’s what we need to do: you need to actually get those treatments to these diverse communities.”In 2022, 55% of all new HIV infections were within “key populations”, such as gay men, other men who have sex with men, sex workers, transgender people, prisoners and people who inject drugs.Prof Linda-Gail Bekker, of South Africa’s Desmond Tutu Health Foundation, has seen US funding for three trials of potential HIV vaccines involving eight countries cancelled and only reinstated after an appeal to the US supreme court.“We’re running around like chickens without heads to at least get one going, because the vaccines are sitting in the fridge and will expire,” she says.She led the lenacapavir trial that showed it offered 100% protection to young women in sub-Saharan Africa, but now worries about HIV/Aids prevention “falling off the radar completely”.The global community had been making headway towards the United Nations’ goal of ending Aids by 2030, she says, with a five-year plan to use “amazing new innovative tools and scale them up”, which would have led to “less dependence on foreign aid and more self-reliance” as new infections fell and attention shifted to maintaining treatment for people with HIV.“All of that is hugely at risk now because, without these funds, our governments will have to step up but they will concentrate on treatment,” she says. “We know they will do that, because that is what we did for the first 30 years.”Efforts to control Aids were entering “the last mile”, which was always likely to be more expensive, she says. “The people who were happy to come into health facilities, they would have come into health facilities.”It would be difficult to rely on government funding to reach the remaining groups, she says, not only because of fewer resources but also because in some countries it means targeting groups whose existence is illegal and unrecognised, such as sex workers or sexual minorities, and young girls may be reluctant to use government clinics if they are not supposed to be sexually active.“I feel like the odds are very stacked against us,” says Bekker, adding: “We’re obviously going to have to re-programme ourselves [and] formulate a different plan.”Pepfar had pledged funding to the Global Fund to Fight Aids, Tuberculosis and Malaria, to deploy 10m doses of lenacapavir in low-income countries. While the Global Fund has promised to maintain its commitment, it might receive fewer than the planned number of doses, Bekker fears.“Six months ago, I was saying the best thing we can do with lenacapavir is offer it to everybody in a choice environment. [Now] I think we’re gonna have to say who needs [injectable] prep,” she says, “and the rest have to do the best they can.“How do we make that decision? And what does that look like? It is back to sort of rationing.“When we started ARVs [antiretroviral drugs] way back in 2000,” Bekker recalls, “you would go, ‘you get treatment; you don’t, you don’t, you don’t’.“It feels terrible … but you have to get over that. You have to say it will be infection-saving for some people. And we’ve got to make it count.”View image in fullscreenFor Beatriz Grinsztejn, president of the International Aids Society, the disruption is critical and threatens many vulnerable people. But, she adds, it could present “an important opportunity for ownership – otherwise we are always left in the hands of others”.She worries about the impact of cuts to funding on younger scientists, with their potential loss from the research field “a major threat for the next generation”. But, she adds, the HIV community is “powerful and very resilient”.There have already been calls for new ways of doing things. It is “time for African leadership”, members of the African-led HIV Control Working Group write in the Lancet Global Health. There are now plans for Nigeria to produce HIV drugs and tests domestically.Christine Stegling, deputy director of UNAids, says it began “a concerted effort” last year to develop plans with countries about how their HIV programmes could become more sustainable domestically “but with a longer timeframe … now we are trying to do some kind of fast-tracking”.Governments are determined, she says, but it will require fiscal changes either in taxation or by restructuring debt.The goal of ending Aids by 2030 is still achievable, Stegling believes. “I think we have a very short window of opportunity now, in the next two, three months, to continue telling people that we can do it.“I keep on reminding people, ‘look, we need to get back to that same energy that we had when people were telling us treatment can’t be available in the global south, right?’ And we didn’t accept it. We made it happen.“We have national governments now who are also very adamant, because they can see what can happen, and they want to make it happen for their own populations.” More

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    Fired USAid workers and HIV activists hold ‘die-in’ to protest Trump and Musk

    Fired USAid employees and advocates for people with HIV staged a protest in a Capitol office building on Wednesday, warning that Donald Trump’s drive to dismantle the agency tasked with implementing Washington’s foreign aid agenda imperils the fight against the virus.Wearing white T-shirts that read “Aids funding cuts kill” and chanting “Congress has blood on its hands, unfreeze aid now”, around three dozen protesters lay down in the rotunda of the Cannon House office building, home to the offices of representatives from both parties. Capitol police said about 20 arrests were made of demonstrators who defied their orders to disperse.“What we are demanding of Congress is that they stop behaving like doormats in the face of this attack on humanitarian assistance that truly is highly effective and life-saving,” Asia Russell, executive director of Health Gap, a global advocacy group fighting against HIV, said prior to the protest.“It’s very hard to overstate what’s at stake regarding humanitarian assistance.”The protest came as USAid remained frozen by the Trump administration’s rapid moves to close the agency. Over the weekend, the agency announced that it was placing all but a small number of its employees worldwide, as well as nearly 2,000 staffers based in the United States, on paid leave. Those working in Washington DC have been invited to retrieve their belongings from its headquarters, which is set to be turned into office space for US Customs and Border Protection, one of the agencies implementing Trump’s hardline immigration policies.On Tuesday, a federal judge reportedly gave the government a two-day deadline to release billions of dollars in foreign aid funds that had been held back after Trump ordered USAid to stop work. If those funds are not restored, former USAid employees who attended the protest at the Capitol warned, the global fight against HIV will be set back.The United States has been a leader in the campaign against the virus that causes Aids through Pepfar, a program that provides medication to 20 million people worldwide and was established during Republican George W Bush’s presidency. But USAid’s abrupt closure has stopped payments to providers working with the program worldwide.“This is not controversial, and what is happening is not government efficiency, it’s government fraud, waste and abuse when it comes to what Doge is doing,” said the fired USAid contractor Van Credle, referring to Elon Musk’s so-called “department of government efficiency”, which spearheaded the dismantling of her agency as well as other deep cuts to federal services.The Republican majorities elected to both the Senate and House last November have thus far shown little interest in saving USAid and even supported its closure, despite the fact that foreign assistance has in the past enjoyed support on both sides of the aisle. Kelsey Crow, a contractor at the agency’s bureau of global health who lost her job, said the protest was meant to encourage lawmakers who previously supported USAid to step up.“So much of our work at USAid is mandated by Congress, and so for Congress to not be taking action, for Congress to be holding hearings that are pushing out lies and falsehoods about USAid to say that the waivers are back when we know that they’re actually not turned on and the money’s not actually flowing, it’s incredibly disappointing,” Crow said.skip past newsletter promotionafter newsletter promotionPeter Kerndt, a physician who spent five years with USAid coordinating the fight against tuberculosis in African and Asian countries, said it will be “impossible” to achieve a global goal of eliminating the virus by 2030 if the agency goes away.“For this administration, for Elon Musk to call USAid a criminal organization that should die and to gleefully celebrate that he spent the weekend putting USAid in the wood chipper instead of going to a party is such an insult to all of the workers, both here and in the country,” he said. “But most of all, the people that suffer are the people that we were there to help.”Andrew Roth contributed reporting More

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    Trump and Musk’s attack on USAid is causing global chaos. Millions of lives are now at risk | Devi Sridhar

    Amid the daily troubling news coming from the United States are the ongoing and increasingly damaging efforts by President Donald Trump, supported by secretary of state Marco Rubio and Elon Musk, to shut down the US Agency for International Development (USAid). Musk has called it a “criminal organization” and said that it was “time for it to die”. The agency website is down, so little official information is available. But in the week since funding to the agency was frozen, and the majority of staff placed on leave, thousands of public health and development programmes worldwide have been thrown into turmoil, and now face an uncertain future.USAid is the main federal agency that works to provide foreign aid assistance to the poorest countries and people in the world. On Friday, a US judge prevented around 2,000 USAid employees from being placed on leave, and ordered the reinstatement of about 500 more. But Trump and Musk appear to want to move forward with a plan that would see its global workforce reduced from about 10,000 staff and contractors, to just over 600.It’s hard to overstate how disruptive this has already been to humanitarian work worldwide: most programmes have just been shut overnight with staff laid off, drugs and food left in warehouses, and patients and others not able to access services. The people affected live in some of the most vulnerable countries like Ukraine, Jordan, Ethiopia, Somalia, the Democratic Republic of the Congo, and Afghanistan.Although we don’t know the full extent of the damage, specific reports suggest that vital services have been thrown into chaos. Some walk-in sexual health and HIV services in South Africa shuttered overnight without notice, Ethiopia’s health ministry has reportedly laid off 5,000 healthcare professionals who were hired with US funding, and nearly half a billion dollars worth of food aid overseen by the agency and currently in ports, transit or storage is destined to spoil.USAid’s overall contribution is immense. It is the largest humanitarian operator globally – in 2023, the US provided 42% of all humanitarian assistance or about $68bn (£55bn), of which USAid spending made up about $40bn. And yet at the same time, both foreign aid and USAid specifically make up a tiny fraction of federal government spending: less than 1%. Cutting back makes little difference to overall US government spending, but is massively destructive to programmes reliant on this funding to deliver their on-the-ground work.What does that less than 1% of federal spending buy the US public? This argument has been re-hashed in presidency after presidency, and the answers are clear.Foreign aid can reduce instability, conflict and extreme poverty, which are major causes of mass displacement. Supporting programmes that keep more places safe and stable means fewer people needing to flee persecution, dire poverty or violence. With all the concerns over illegal immigration, reducing aid could make this challenge even harder to manage. Foreign aid can support countries to grow economically and create new markets and opportunities. Think of places like India, which have managed to create a vibrant and growing middle class.In the world of global health, foreign aid is vital to support countries in managing health challenges, including outbreaks of infectious diseases. Just think back to the west Africa Ebola outbreak in 2014. Liberia, Guinea and Sierra Leone struggled to contain Ebola spreading and were reliant on international partners to assist them. It was in the interest of all countries to help them given that the global spread of Ebola was imminent. In addition, the US builds vital soft power and influence in countries in which it provides help. Russia and China have learned this lesson – and will probably step into the aid vacuum left by the US.And beyond any of those “enlightened self-interest” arguments above is the simple fact that foreign aid helps other human beings who are struggling, including some of the poorest and most vulnerable in the world. It’s good to do because it’s simply good to do. Cutting programmes overnight means that women who might have lived are more likely to die in childbirth; those with HIV face not having access to clinics for lifesaving antiretroviral treatment; and hungry children no longer get nutritional supplements and food.Foreign aid shouldn’t be a partisan issue. The largest global health programme for a single disease, Pepfar, was launched by a Republican president, George W Bush, and is estimated to have prevented 25 million Aids deaths since its creation. I think back to a poll of Americans in 2016 by the Kaiser Family Foundation, where more than 60% of respondents said that the US was spending either the right amount or too little on global health, and only about 30% thought it was spending too much. It’s not clear that the US public actually supports these drastic cuts and freezes.Perhaps many now think that the US needs to worry more about its own domestic financial troubles than sending money overseas. A recent study found that the US economy is performing better than any of its peer countries, but performs worse on other metrics like health, happiness and social trust. “Wealthy but unhappy” is what the study’s authors found. Maybe the lesson here is that Americans need to reject Trump’s discourse and embrace being part of a global community and engaging with the world through agencies like USAid. That could lead to an America that is still wealthy, but just a bit more healthy and happy.

    Prof Devi Sridhar is chair of global public health at the University of Edinburgh More

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    The Long Wave: Why Trump’s USAid freeze endangers millions

    Hello and welcome to The Long Wave. I have been following Donald Trump’s suspension of the US Agency for International Development. USAid is the world’s single biggest aid donor, and the decision to halt its work has sent shockwaves around the world. This week, I trace the effects of its potential demise on the Black diaspora. But first, the weekly roundup.Weekly roundupView image in fullscreenFresh calls for DRC ceasefire | A summit of leaders from across Africa, including Rwanda and the Democratic Republic of the Congo, has called for an immediate and unconditional ceasefire in DRC. The Rwanda-backed M23 rebel group has seized swathes of territory in eastern DRC, leaving thousands dead or displaced.Altadena seeks justice for LA fire victims | A memorial service at the First African Methodist Episcopal church in Pasadena, led by the Rev Al Sharpton, has highlighted the Eaton wildfire’s disproportionate impact on Altadena’s Black residents in a rally for justice and equality.Liverpool waterfront’s role in slavery | Canning Dock in Liverpool, England, where ships trafficking enslaved Africans to the Caribbean were fitted out and repaired, is opening to the public so lesser-told aspects of its history can be explored. This project, alongside other redevelopment programmes, aims to shed light on the waterfront’s role in the transatlantic slave trade.Overtourism fears for Bo-Kaap | Residents of the picturesque, candy-coloured Bo-Kaap district in Cape Town, South Africa, are grappling with the impacts of tourism. Many have expressed frustration about road traffic, crowds blocking streets for photos and rising gentrification.Black hair animation makes waves | Researchers at Yale University and the University of California, Santa Cruz, have developed algorithms to capture the true form of afro-textured hair in animation and computer graphics. The development marks a huge step for the portrayal of Black characters in animated films, cartoons and video games.In depth: What is USAid and why has it been suspended?View image in fullscreenThe significance and reach of USAid’s operations came very close to home when I realised that even in the war-stricken cities of my birthplace, Sudan, USAid was providing support to soup kitchens crucial to the survival of cut-off civilian populations. The freezing of USAid’s work has severely compromised these life-saving efforts, as well as that of US-funded facilities caring for malnourished babies. In the capital, Khartoum, two-thirds of Sudan’s soup kitchens closed in the first week after the aid suspension.On Donald Trump’s first day in office, he announced a 90-day pause in the organisation’s operations because they were part of a “foreign aid industry and bureaucracy … not aligned with American interests”. USAid was established by John F Kennedy in 1961 as an independent agency of the US government. It grew to have a large remit, providing everything from humanitarian assistance to disaster relief. But it also plays a role in education, promoting democratic participation and governance, and supporting the health ministries of the countries it operates in. The range of its programmes and the number of locations in which it is active is staggering.The USAid budget was more than $40bn in the 2023 fiscal year. The suspension, which looks like a permanent dismantling, is embroiled in legal disputes. A federal judge has blocked the decision to put thousands of USAid workers on administrative leave, on the grounds that the Trump administration does not have the authority to abolish an agency established by congressional legislation. As the process unfolds, the work of the agency has been halted overnight, with severe repercussions.Sub-Saharan AfricaView image in fullscreenCountries in sub-Saharan Africa account for more than a third of US foreign assistance spending. In addition to famine relief and medical and humanitarian support in conflict areas such as Sudan, USAid assists health ministries and, most urgently, a large sexual health and HIV prevention programme. Approximately 40,000 healthcare workers in Kenya partly financed by USAid are likely to lose their jobs. The impacts on treatment available to patients, pregnant women and disease treatment are almost too vast to estimate.What is unfolding in South Africa – where patients have showed up for treatment and medication to find that clinics were closed – offers a small insight into what could happen next to people at the sharpest end of medical emergencies. The country is in the grip of one of the world’s largest HIV/Aids epidemics, constituting a quarter of cases worldwide.Latin AmericaView image in fullscreenUSAid’s work focuses on the challenges most prominent in any given location. In Latin America, support for those displaced by guerrilla violence, integration of migrants and the prevention of sexual exploitation have relied heavily on US foreign assistance. Almost 8 million Venezuelans have left the country in the past decade, fleeing economic crises and settling in neighbouring countries. About 3 million of them are in Colombia, the largest recipient of US foreign aid in South America. Last year, USAid funded the feeding and nutrition of a large number of refugees in Colombia, partnering with the UN World Food Programme and extending almost $50m in relief. Abandoning such vulnerable populations not only deprives them of food, but leaves them prone to exploitation and abuse by the sort of criminal gangs that prey on the displaced and hungry.skip past newsletter promotionafter newsletter promotionThe ramifications of the suspension extend to the preservation of precious and fragile ecosystems. In Brazil, USAid forged the Partnership for the Conservation of Amazon Biodiversity, an agreement that supports Indigenous people and rural communities, and in doing so protects the Amazon and helps combat the climate emergency. The loss of that support affects not just these communities and those employed by such foreign assistance programmes, but the environmental health of the planet.The CaribbeanView image in fullscreenIn the Caribbean, USAid projects are diverse and embedded in civil society, environmental protection and future proofing younger generations. In Jamaica, among the programmes that have halted is the Youth Empower Activity, which is targeted at the most at-risk people. It helps them access education, professional training and improve job prospects, with a view to increasing household income and promoting national development. Thousands of Jamaicans are enrolled in the scheme – but now a total of $54m of US funding is under threat in the country, according to government estimates.The suspension could also interrupt a USAid-funded, Caribbean-wide project to bolster food security by increasing fruit and vegetable farming, scholarships for degrees in agriculture and support for small farmers. The shutdown came days after the launch of a programme to reduce the risks to marine and coastal biodiversity – an attempt to ameliorate an environmental crisis affecting the region’s coral reefs and biodiversity. Beyond the impact on individuals, small business owners, and the environment, there is, as with all such stoppages, the loss of livelihoods of people employed by these schemes.Soft power lostView image in fullscreenDespite the large sums deployed, USAid, and US foreign assistance in general, is perceived to also benefit the United States. Although it cannot be quantified in exact numbers, supporters say such assistance contributes to the US’s soft power abroad. That soft power is twofold: the first is in a sort of preventive measure, whereby aid helps to stabilise poorer countries and pre-empt deepening crises that could compromise the US’s global security agenda. The second is that aid is seen as a bulwark to the influence of countries such as Russia and China, both of which are particularly active in Africa, for example. In maintaining a presence on the ground across the world, and strong alliances with governments and civil society organisations, the US promotes a foreign policy that aims to curtail the ability of its adversaries to create their own alliances and political footholds.Aid model under scrutinyView image in fullscreenThe speed of the suspension, and how it has plunged so many around the world into hunger and uncertainty, raises questions about the wisdom of depending so profoundly on a country that has proven to be so unreliable. Ken Opalo, a specialist in development and the author of An Africanist Perspective on Substack, wrote: “The cuts are a painful reminder that aid dependence isn’t a viable development strategy.” If the USAid suspension remains, that viable development strategy, or the stepping in of alternative funders, will not materialise overnight. In the meantime, millions of people wait to learn if their sudden change in circumstances will become permanent, subject to a huge constitutional battle thousands of miles away.

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    Be clear about what Trump and Musk’s aid axe will do: people will face terror and starve, many will die | Gordon Brown

    An earthquake of magnitude 7.0 or above could not have caused more carnage. Recent floods in Asia and droughts in Africa have been catastrophic, yet they have inflicted less damage and affected fewer people than the sudden withdrawal of billions of dollars of US aid from the world’s most volatile hotspots and its most vulnerable people. Coming alongside President Trump’s plan for a US takeover of Gaza, the US administration’s resolve to shut down its international aid agency sends a clear message that the era when American leaders valued their soft power is coming to an end.But while the Gaza plan is as yet only on the drawing board, USAid cuts – which will see funding slashed and just 290 of the more than 10,000 employees worldwide retained, according to the New York Times – have already begun to bite this week. We have seen the halting of landmine-clearing work in Asia, support for war veterans and independent media in Ukraine, and assistance for Rohingya refugees on the border of Bangladesh. This week, drug deliveries to fight the current mpox and Ebola outbreaks in Africa have been stopped, life-saving food lies rotting at African ports, and even initiatives targeting trafficking of drugs like fentanyl have been cut back. One of the world’s most respected charities, Brac, says that the 90-day blanket ban on helping vulnerable people is depriving 3.5 million people of vital services.One critical programme has been granted a limited waiver. Pepfar, created by Republican president George W Bush, offers antiretroviral prescriptions to 20 million people around the world to combat HIV and Aids. Its activities escaped the ban only after warnings that a 90-day stoppage could lead to 136,000 babies acquiring HIV. But it has still been blocked from organising cervical cancer screening, treating malaria, tuberculosis and polio, assisting maternal and child health, and efforts to curtail outbreaks of Ebola, Marburg and mpox.Not only does the stop-work edict mean that, in a matter of days, the US has destroyed the work of decades building up goodwill around the world, but Trump’s claim that America has been over-generous is exposed as yet another exaggeration. Norway tops the list as biggest donor of official development assistance (ODA) as a percentage of gross national income (GNI) at 1.09%; Britain is at just over 0.5%, albeit down from the UN target of 0.7%; but the US is near the bottom of the advanced economies at 0.24% – alongside Slovenia and the Czech Republic. It is simply the size of the US economy – 26% of world output – that means that the 0.24% adds up to more aid than any other country. The US provided $66bn in 2023, making USAid a leader in global humanitarian aid, education and health, not least in addressing HIV/Aids, malaria and tuberculosis.On Sunday night, Trump told reporters that USAid had been “run by a bunch of radical lunatics, and we’re getting them out”. “I don’t want my dollars going towards this crap,” his press spokesperson added, with one of the president’s chief advisers Elon Musk calling the agency a “viper’s nest of radical-left marxists who hate America”. “You’ve got to basically get rid of the whole thing. It’s beyond repair,” he said. “We’re shutting it down.”View image in fullscreenIndeed, in a post on X last weekend, Musk shared a screenshot quoting the false claim that “less than 10 percent of our foreign assistance dollars flowing through USAID is actually reaching those communities”. The implication is that the remaining 90% was diverted, stolen, or just wasted. In fact, the 10% figure is the proportion of the budget going directly to NGOs and organisations in the developing world. The remaining 90% is not wasted – instead, it comprises all the goods and services that USAid, American companies and NGOs, and multilateral organisations deliver in kind, from HIV drugs to emergency food aid, malaria bed nets, and treatment for malnutrition. It is simply untrue that 90% of aid falls into the wrong hands and never reaches the most vulnerable.In fact, the initial blanket executive order proved to be such a blunt instrument – the only initial exemptions were for emergency food aid and for military funding for Israel and Egypt – that it had to be modified to include exceptions for what the government called “life-saving humanitarian assistance”, although it stopped short of defining them. “We are rooting out waste. We are blocking woke programs. And we are exposing activities that run contrary to our national interests. None of this would be possible if these programs remained on autopilot,” said a statement released by the state department. The new secretary of state, Marco Rubio, now wants his department to control the whole budget and close down USAid entirely. “Does it make America safer? Does it make America stronger? Does it make America more prosperous?” Rubio asked in a statement that suggested that the America which generally worked multilaterally in a unipolar era is now determined to act unilaterally in a multipolar one.This new stance is not just “America first” but “America first and only” – and a gift to Hamas, IS, the Houthi rebels, and all who wish to show that coexistence with the US is impossible. The shutdown is also good news for China, whose own global development initiative will be strengthened as it positions itself to replace America. Desperate people will turn to extremists who will say that the US can never again be trusted. And by causing misery and by alienating actual and possible allies, far from making America great again, the cancellation of aid will only make America weaker.The tragedy for the planet is that US aid cuts come on top of diminishing aid budgets among the world’s richest economies, from Germany to the UK. International aid agencies are now so underfunded that in 2024, for the second consecutive year, the UN covered less than half of its humanitarian funding goal of nearly $50bn – at a time when increasing conflicts and natural disasters necessitate more relief donor grants than ever. Yes, we can discuss how greater reciprocity can create a fairer system of burden sharing – but further cuts in aid threaten more avoidable deaths, and a poorer world will ultimately make the US poorer too.US generosity is often seen as mere charity, but it is in the country’s self-interest to be generous because the creation of a more stable world benefits us all. We all gain if USAid can mitigate the spread of infectious diseases, prevent malnutrition in the Democratic Republic of the Congo and Sudan, halt the upsurge of IS in Syria and support a fair, humanitarian reconstruction of Gaza and Ukraine. Only the narrowest and most blinkered view of what constitutes “America first” can justify the disaster America has unloaded on the world.

    Gordon Brown is the UN’s special envoy for global education and was UK prime minister from 2007 to 2010 More

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    What is the Pepfar fight and what does it mean for Africa?

    What is Pepfar and why is it in the news?Pepfar is an acronym for the US “president’s emergency plan for Aids relief”. It was set up two decades ago by George W Bush to address the HIV epidemic.It’s the biggest government-run fund of its kind. Since 2003, the project has donated about $110bn (£90.5bn) to governments, universities and nonprofits in 50 countries, either directly or through agencies such as USAid.Until now Pepfar has been funded in five-year cycles. In the past the programme has had virtually unanimous support from Republicans and Democrats. But the next funding cycle (from 2023 to 2028) became ensnared in US abortion politics and the fallout contributed to Congress missing the 30 September deadline to allow another five-year funding cycle for the initiative.What’s the link between Pepfar and abortion?US laws already prevent Pepfar (or any state agencies) from paying for abortion services, according to the California-based policy research group, Kaiser Family Foundation (KFF). But in May, a coalition of conservative thinktanks and lawmakers began to make waves with arguments that Joe Biden’s administration has “hijacked” Pepfar to promote abortion instead of treating and preventing HIV.That’s where the risk to Pepfar’s five-year budget emerged – because the Republican lawmakers then refused to sign off on a spending bill for Pepfar if there weren’t stricter rules in place to stop Pepfar funds from overlapping with abortion services in any way.According to Brian Honermann, deputy director of public policy at the US-based Foundation for Aids Research, the allegations that Pepfar has been usurped to push a “radical social agenda” overseas are “baseless” and “stitched together from unrelated policy speeches, documents and assertions about how those apply to Pepfar”.What will happen to Pepfar now?The multibillion-dollar health programme is a permanent part of US law. That means Pepfar funding will continue, but it will lose its favoured position of receiving five years of funding at a time.The failure to reauthorise Pepfar will mean some of its built-in rules will expire, including a guideline that requires 10% of Pepfar money to go to orphans and children in need.Will organisations and governments lose their Pepfar grants?The fund has enough money to pay governments and civil society organisations until September 2024 (about $6.8bn), but a state department spokesperson warns that Pepfar won’t escape unscathed in the long term.Moreover, getting funding for only one year at a time will make it harder for Pepfar to plan ahead and to source crucial HIV tools, such as condoms or medicine, at the best prices. This could ultimately imperil the people that rely on the fund’s support, the spokesperson warned.The symbolic power of a five-year commitment will also be lost, says Honermann. “It shows partner countries that the US is invested for a significant period of time and that Pepfar won’t just disappear.”The threat of a permanent ‘gag rule’Another factor has swirled around Pepfar’s funding drama: some lawmakers have said they’ll only agree to restart the five-year funding regime if the fund is once again subject to the “Mexico City policy”, also called the “gag rule”.The gag rule bans organisations and governments from providing or promoting termination of pregnancy services regardless of whose money they’re using to do it. It was expanded to apply to Pepfar for the first time in 2017. It is only ever enforced when there’s a Republican president in the White House, so is not currently in effect.And while there is no finalised legislation that would make a permanent gag rule a reality (and Honermann argues it would be unlikely to get past the Democrats), the threat of it may already have done some damage.Research conducted by Fòs Feminista, a global alliance that advocates for sexual and reproductive rights, found that the 2022 decision to roll back the national right to an abortion in the US had a contagious impact in a number of countries. In Nigeria, for instance, respondents told Fòs Feminista that local lawmakers were using the change in US abortion laws to push back on a more liberal law in their country. Terminations are legal in Nigeria only if carrying the foetus to term threatens the mother’s life.Recipients of US government funding are often so worried about losing it that they enforce abortion laws more harshly than is necessary. Research shows that confusion about whether the gag rule had been revoked at the start of the Biden administration resulted in the policy – and its harms – being in place for much longer in practice.And the Pepfar wrangling and attendant media coverage has already resulted in mixed messages reaching health advocates in Africa. Some South African activists told the Guardian they were concerned that the news would be calamitous for civil society in the country. Such organisations receive the most Pepfar dollars (44%) in South Africa according to 2020 tracking data. The government gets just under 1.5% of the money.Honermann says that there is an intentional political strategy to keep communication about the changes in restrictions vague. “It’s a way to encourage over-enforcement for fear of falling on the wrong side of this.”He adds: “For now, Pepfar will continue as long as funding is made available. But these political threats to the programme are ultimately playing with the lives of millions of people worldwide who rely on this programme.”What has the reaction been in Africa?Dave Clark is the chief operating officer at the Aurum Institute, a non-profit that works on HIV and tuberculosis (TB) projects in South Africa, Mozambique, Ghana, Lesotho and Eswatini.Aurum is a partner for Pepfar’s Dreams project which works towards an Aids-free future for girls and women aged 10 to 24 by providing HIV services, contraception and violence prevention support for women, adolescents and their sexual partners.One of the major strengths of Pepfar, Clark says, is that it’s a sure-fire source of carefully planned funding for global health in a world that is often more talk than action.He explains: “The debate in America should not throw us off saving lives. Pepfar is what it says on the label: president’s emergency plan for Aids relief. That’s its extraordinary power and legacy.” More