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Tackling The Reality Of Noma

A doctor in scrubs reaches out to examine a young Nigerian boy in a check shirt with nasal disfigurement accompanied by his father (rear). Other medical staff are in the background and foreground.

Adamu, a 14-year-old noma survivor, is screened by physicians at the Noma Hospital in Sokoto, Nigeria. Adamu's father has been pursuing reconstructive surgery since Adamu first fell ill.Credit: Claire Jeantet and Fabrice Caterini/Inediz

The deadly condition noma is awash with contradictions. It destroys tissue and bones in the most visible part of the body — the face — yet finding cases is difficult, because people who have been affected by the illness are often hidden away owing to stigma. It is typically perceived as a disease that affects people in only certain parts of Africa, yet it was found a century ago in Europe and North America and still affects people — typically children — around the world. Although the condition can be successfully treated with antibiotics, if caught early, anyone who is not treated at this stage is very likely to die.

Noma begins as an infection in the mouth, often seen as swollen gums that fill with pus. Treatment with readily available antibiotics can stop the disease in its tracks. In the absence of early intervention, however, the infection becomes gangrenous and much tougher to treat; large parts of the face, tongue and jaw are destroyed. "From there on, you can just do wound treatment and stabilize the patient, such as giving them infusions of nutrients," says Anaïs Galli, a researcher at the Swiss Tropical and Public Health Institute in Basel, who has collaborated on a large study of noma.

Many people who do not receive antibiotics early do not survive; mortality can be as high as 90% in this group1. "Most of them die in the gangrenous stage because you're very prone to sepsis," Galli says. Those who do survive might be robbed of their ability to speak.

The relative ease with which this can be avoided is a source of frustration to many. "We do not need fancy and costly treatment innovations to fight noma," says Fidel Strub, who survived the disease. He has been working with another noma survivor, Mulikat Okanlawon, to raise awareness and help others who have experienced the disease, through an organization they co-founded called Elysium Noma Survivors Association in Stockholm. In May, the pair were named among the 100 most influential people in health in 2024 by Time magazine.

After decades of abject neglect by researchers, funders and governments, the tide might finally be turning for noma. In 2023, the World Health Organization (WHO) announced that the disease — which gets its name from the Greek word meaning to devour — would finally be included on its official list of neglected tropical diseases (NTDs). According to Stuart Ainsworth, an infectious-disease researcher at the University of Liverpool, UK, this recognition should help to usher in fresh initiatives to tackle noma.

Putting a disease on the official NTD list "provides global awareness and legitimacy in the eyes of funders and governments", he explains — countries usually follow the WHO's lead in deciding which diseases to prioritize. Shining an international spotlight on noma in this way, he adds, "translates into substantive increases in funding and subsequent innovation and research on new therapies and diagnostics".

Persistent mysteries

The neglect of noma is shown in just how little is known about the condition. It is unclear, for instance, how many people are affected by it. The WHO reports that 140,000 new cases occur each year, but that figure is based on 1998 data. In 2003, a smaller estimate of 40,000 was put forth by scientists tracking incidence based on individuals in a cleft lip palate surgical centre1. The real number probably falls somewhere in the middle, says Galli.

A Nigerian teenage woman in a colourful headscarf and tshirt with facial scarring from noma stares off camera

A portrait of Blessing, a 17-year-old noma survivor, taken at Noma Hospital in Sokoto, Nigeria. Stigma around facial scarring can make finding people with the disease difficult.Credit: Claire Jeantet and Fabrice Caterini/Inediz

Galli was part of an effort to gauge the current geographical reach of noma. Historical records indicate that noma was known in classical and medieval European civilizations. Dutch physicians in the sixteenth and seventeenth centuries noted that the rapidly spreading disease affected the faces of children and was an ulceration that differed from cancer. In the next couple of centuries, people realized that the condition was linked to factors such as poverty and malnutrition. With economic progress that allowed more parents to feed their children sufficiently, as well as the advent of antibiotics, such as penicillin, in the twentieth century, noma gradually disappeared from Western countries.

Many specialists thought that the disease was now limited to what they called the noma belt. This vast swathe of territory is predominantly in the Sahel region of Africa — a band that separates the Sahara Desert to the north and tropical savannas to the south, and that includes parts of Chad, Niger and Nigeria. But Galli and her colleagues found that the truth was more complicated2. Although there is a concentration of noma cases in the Sahel, the disease is also found in many other places, including parts of Asia. In 2022, Galli and her colleagues reported an updated global distribution of noma that showed that people had been diagnosed with noma in at least 23 countries in the preceding decade.

"One of the most interesting things coming out of the literature today is the vast geographical spread of all the case reports," says Elise Farley, an epidemiologist with international aid organization Médecins Sans Frontières (also known as Doctors Without Borders) in Cape Town, South Africa, who has studied noma extensively, including cases in Laos3. "Noma is frequently, incorrectly, framed as a disease that mainly affects children in Africa," Farley says. In reality, she contends, it is found all around the globe.

Perhaps the most persistent mystery surrounding noma is its origins: scientists still haven't identified the pathogen, or pathogens, that cause it. Ainsworth says that scientists have long suspected that the disease is caused by some of the same microorganisms that infect the gums in gingivitis. The corkscrew-shaped bacterium Borrelia vincentii has been implicated as a possible culprit, but so have other bacteria, and attempts to single out which one is to blame have been unsuccessful. "Every time it's done you get a slightly different result," Ainsworth says. "There's no smoking gun."

In the past few years, more scientists have begun exploring whether this murky outlook might be because noma is caused not by any one microorganism but rather by a disruption of the oral microbiome. Ainsworth is part of a team of researchers that has initiated a project to analyse samples from 20 children with acute noma in northern Nigeria. The team is applying an approach called metagenomics — a method that casts a wide net by bulk sequencing genetic material and seeing what turns up. The researchers hope that this will yield an unprecedented level of detail about which microbes are present in acute disease.

What is known is that risk factors for noma include severe malnutrition, along with weakened immunity as a result of other ailments such as HIV infection, cancer, tuberculosis or measles. Malnutrition can also weaken the body's innate immune response, which is an essential first-line defence in mucosal barriers, such as those in the mouth. But not everywhere that experiences severe malnutrition has cases of noma. The paradox has led some scientists, including Ainsworth, to speculate that it is the absence of specific micronutrients in certain regions that might be a contributing factor. If this turns out to be true, then supplementation of those micronutrients might offer some protection.

A plan for the future

Even before the WHO's inclusion of noma on its list of NTDs, there were signs that the research community was starting to look more closely at the condition. In the early 2000s, the number of papers published each year mentioning noma hovered in the single digits. In the past decade, however, the years in which more than a dozen noma papers were released have been more frequent. Although that's still a small number, the increase represents a hugely significant change, says Philippe Guérin, an epidemiologist at the University of Oxford, UK, and director of the Infectious Diseases Data Observatory.

A Nigerian woman squints as she cleans the noma derived wound in her young daughter's cheek while seated on a hospital bed in a ward. They are both wearing colourful Ankara dresses.

Luba cleans the wounds caused by noma on the face of her young daughter, Nasira; they live in a remote area more than 200 kilometres from the Noma Hospital in Sokoto, Nigeria.Credit: Claire Jeantet and Fabrice Caterini/Inediz

The WHO's commitment to coordinating efforts to fight noma should only increase the attention paid to it. Although the exact amount has not yet been determined, the agency estimates it will spend US$600,000 on noma over the next two years. The money will be used to reinforce advocacy and help to carry out policy work to get noma included on the WHO's road map for neglected diseases that charts activities through to 2030. "We see a growing interest around noma," says Benoit Varenne, an oral-health specialist at the WHO's department of Noncommunicable Diseases, Rehabilitation and Disability in Geneva, Switzerland.

"The inclusion of noma on WHO's NTDs list has already been felt here," says Abdala Atumane, who leads the oral-health department at the provincial health service of Zambezia in Mozambique. In January 2024, Atumane and his colleagues collaborated on a study with the Barcelona Institute for Global Health (ISGlobal) in Spain. All of this, he says, "has brought renewed interest in the disease to the country". For example, Mozambique's Ministry of Health already has plans to conduct more activities on noma. And, according to Atumane, the NTD designation has put the country's noma efforts "on the radar" of the international community.

The results of the study have yet to be published. The preliminary findings, however, bring home the urgency of raising awareness about the disease at the local level. In a little more than three weeks of fieldwork, the team met 3 people with active cases of noma and 18 survivors. "Most of them were adults who had lived all their lives without knowing the name of the disease," Atumane says. The results are also helping to map the need for preventive care, and highlighting gaps in care for survivors. "For existing cases, there is a great need for teams of plastic surgeons," Atumane says.

Perhaps the most pressing challenge for scientists hoping to tackle noma, however, is finding people with the disease. Without a more active and organized search for individuals affected by the disease, and broader adoption of methods of diagnosing and categorizing cases, some researchers are concerned that the new found intensity in the fight against noma will be squandered.

The stigma that causes people to hide family members who have noma makes it harder to find cases. "You cannot deal with noma like with any other disease: the suffering and stigma are huge, and this factor needs to be taken in consideration," Okanlawon explains. It's also difficult to enumerate cases because the disease progresses so quickly. A person can reach the necrotizing gangrene phase in just two weeks. If they die from the infection, they might go uncounted.

Because of the challenges of finding individuals affected by noma, some scientists, including Farley, advocate for a more active approach. This might involve, for example, performing oral screenings as part of malnutrition surveys or vaccination programmes for other disease. Gallin agrees that piggybacking on existing health campaigns would be smart. These efforts "already access very remote populations, and often children in the age of noma-onset risk", she says. "So they could screen orally, for first signs" to catch cases early enough so that antibiotics can avert the destruction of facial tissue and death.

When a person does present with symptoms, there can then be disagreement between researchers on whether the person's oral infection can be called noma. The WHO has offered a five-stage system for categorizing cases: acute necrotizing ulcerative gingivitis, oedema, gangrene, scarring and sequela. But some medical experts have called for a simpler system. In 2022, a group of oral-health specialists argued that epidemiological studies should not count necrotizing gingivitis as a stage of noma4. That is because not all cases of necrotizing gingivitis progress to noma. To count them all as such, the authors of the paper wrote, "would make a mockery of the data about noma".

Guérin thinks that getting researchers to agree on how to categorize and count cases of noma is essential for making progress. "If we don't use a harmonized way to quantify it, it goes under the radar and nobody works on it," he says.

The inclusion of noma in the WHO's list of neglected tropical diseases could bring more consensus about how to classify stages of the disease, and bolster efforts to detect it early. According to Okanlawon, this might include awareness training for people in local communities so that they can take their children for intervention in the stages when the disease is still easy to treat. "If my grandparents knew," she says, "they would have not allowed this to happen to me."


This Preventive Drug Could Be A 'game Changer' In Ending The HIV Epidemic

Can we eliminate the HIV epidemic?

It's a question that dates back to the start of the epidemic in the 1980s. With 1.3 million new infections a year, the epidemic continues … and the world is not on track to meet the ambitious U.N. Goal of ending HIV/AIDS by 2030.

But now there's rising optimism among leading infectious disease experts after the latest groundbreaking clinical trial results for a drug called lenacapavir which have shown it to be capable of virtually eliminating new HIV infections through sex.

PURPOSE 2, the name for the latest trial sponsored by Gilead Science, the California-based maker of lenacapavir, found the drug to be 96% effective in preventing HIV infections in the newly released results of a clinical trial of more than 3,200 cisgender men, transgender men, transgender women and gender non-binary individuals who have sex with partners assigned male at birth. The study was conducted across sites in Argentina, Brazil, Mexico, Peru, South Africa, Thailand and the United States.

These results follow equally dramatic findings from a previous lenacapavir trial called PURPOSE 1 which followed 5,300 cisgender women in South Africa and Uganda. In news which headlined July's AIDS 2024 conference in Munich, early results indicated 100% efficacy, after Gilead Sciences revealed that not a single woman who had received the drug since the trial began in August 2021, had contracted HIV.

Ethel Weld, an assistant professor of medicine at the Johns Hopkins University School of Medicine, described both sets of results as 'a thrilling game changer for HIV prevention.'

In particular, lenacapavir which is administered via a twice-yearly injection, represents a dramatic new alternative to the current standard of care for HIV prevention: taking a pill called Truvada every day. While this type of drug, called pre-exposure prophylaxis (PrEP), has also been shown to be 99% effective in blocking HIV infections from sex in clinical trials, this is not necessarily the case in the real world.

People don't always take their pills. In a study in South Africa, women said they felt there was a stigma to the pill -- a sexual partner might assume they're taking it because they already have HIV or because they have other partners. Research has also highlighted significant barriers in taking daily oral PrEP among men who have sex with men, ranging from access to the drug, inconvenience, and perceptions that it is unnecessary. One study showed oral PrEP effectiveness to be as low as 26% in certain populations -- men under age 30, for example.

Weld points out that in both the PURPOSE 1 and PURPOSE 2 trials, it was notable that the participants randomized to receive daily oral PrEP instead of lenacapavir, showed low adherence to the medication.

"The burden of taking daily medicine varies for each individual and may well be perceived as an even greater burden for healthy people who feel fine," says Weld. "The finding that twice yearly injections have high efficacy in preventing HIV, lowers the amount that an individual has to do over the course of a lifetime to protect themselves. It puts lenacapavir much closer to the domain of other preventive paradigms such as vaccination."

A potential 'game-changer'

Advocacy groups have also expressed great enthusiasm. "Lenacapavir would be "a real game-changer," particularly for people facing stigma and discrimination in low- and middle-income countries," read a statement by People's Medicines Alliance -- a global coalition of more than 100 organizations that span 33 countries and that advocate for making medications more accessible.

Cécile Tremblay, a HIV researcher at the University of Montréal, highlighted the drug's potential to tackle the epidemic in sub-Saharan Africa where the disease burden is greatest. Despite accounting for 10% of the world's population, sub-Saharan Africans comprise two-thirds of people living with HIV -- 25.7 million out of 38.4 million. Every week, about 4,000 teen girls and young women in Africa are newly infected with HIV.

"Not only is lenacapavir extremely efficacious but the efficacy has been shown in a population of women in sub-Saharan Africa where the epidemic is the greatest, and oral PrEP has not performed as well due to stigma and discrimination," says Tremblay.

Next steps

Lenacapavir is not a new drug. It's been approved by the FDA in the United States for multi-drug resistant HIV treatment since 2022. But PURPOSE 1 and PURPOSE 2 are the first clinical trials to test it for HIV prevention.

According to Gilead Sciences, the data from the two trials will now be used to support a series of global regulatory filings which will begin by the end of 2024, with the aim of launching lenacapavir onto the market at some point in 2025.

Yet any eventual approval and widespread use would come with challenges. According to an analysis presented at the 24th International AIDS Conference (AIDS 2022), PrEP medications would need to cost less than $54 a year per patient for South Africa, for example, to be able to afford them. Lenacapavir's cost as HIV treatment in the United States in 2023 was $42,250 per new patient per year. Oral PrEP options, on the other hand, can cost less than $4 a month.

Given the drug's potential, Tremblay says that it is critical for access to be as widespread as possible. "The infrastructure needs to be in place to reach at-risk populations and make sure they can access it," she says. "If everyone at risk could receive this prophylaxis, within a few years it could alter the course of the epidemic. When you substantially decrease the transmission rate, then the epidemic can wane down."

Copyright 2024 NPR


J.D. Vance Gives Unhinged Defense Of Migrants Conspiracy In Wild Rant

J.D. Vance published a lengthy screed Monday night blaming "out of control" Democratic rhetoric for the presence of a gunman on Donald Trump's Mar-a-Lago property, while simultaneously downplaying his own racist extremism that has incited bomb threats in Springfield, Ohio.

Vance wrote a 1,200-word diatribe on X in which he attempted to pin the potential violence on Democratic rhetoric and the American media.

"Here is what we know so far: Kamala Harris has said that 'Democracy is on the line' in her race against President Trump," Vance wrote. "The gunman agreed, and used the exact same phrase. He had a Kamala Harris bumper sticker on his truck."

Vance's claim that the gunman, Ryan Routh, was motivated by his Democratic politics doesn't entirely fit with the man's own statements. In January, Routh (who voted for Trump in 2016) advocated for a Republican ticket of Nikki Haley and Vivek Ramaswamy as a means to keep Trump out of the White House.

"How do you think the Democrats and their media allies would respond if a 19-time Republican donor tried to kill a Democratic official? It's a question that answers itself. For years, Kamala Harris's campaign surrogates have said things like 'Trump has to be eliminated,'" Vance wrote.

Of course, Vance's argument about Democratic rhetoric falls flat for, well, anyone who has ever listened to Trump speak. In the last five days alone, Trump also called Harris a "threat to democracy" and warned repeatedly that she would bring mass "destruction" if elected to the White House.

Unsurprisingly, Trump and his extremist rhetoric have been directly linked to multiple acts of violence going back to his first presidential campaign and his election in 2016, which prompted an anomalous rise in hate crimes across the country. The former president's anti-immigrant "invasion" rhetoric was used by a mass shooter in El Paso, Texas, who killed 22 people in 2019.

Vance also complained about the way the recent attempt on Trump's life had been portrayed by the media.

"NBC News called the attempted assassination a 'golf club incident.' The LA Times told us 'Trump Targeted at Golf Club.' The USA Today's top of the fold headline is 'Hope in America,' and they published a preposterous letter to the editor arguing that Trump 'brings these assassination attempts on himself,'" Vance wrote.

The Trump campaign had already published a list of their least favorite coverage yesterday, which included these points, citing specific journalists they felt had inaccurately covered the near-attempt on Trump's life.

Vance also refused to take any responsibility for inciting the 33 bomb threats that have created chaos in Springfield, a town he brought into the national spotlight when he falsely claimed Haitian immigrants were eating their neighbors' pets there.

"The double-standard is breathtaking," Vance wrote. One can't help but agree.

"Donald Trump and I are, by their account, directly responsible for bomb threats from foreign countries. Why? Because we had the audacity to repeat what residents told us about the problems in their town. Meanwhile, Harris allies call for Trump to be eliminated as the media publishes arguments that he deserved to be shot," Vance wrote.

Ohio Governor Mike DeWine said that Springfield has received at least 33 bomb threats since last week, when Vance took up the task of helping his constituents by spreading disinformation. His newest screed was no exception.

Vance continued to claim that the Haitian immigrants in Springfield were "illegal" even though they are not. Vance also continued to claim there have been "rising rates of disease" and an "HIV uptick" as a result of the city's new Haitian residents. The Clark County Combined Health District Commissioner Chris Cook said Friday that Vance's claims that cases of HIV and tuberculosis had risen were completely false.

"Overall, we have not seen a substantial increase in all reportable communicable diseases," Cook said, according to NBC News. "In fact, if you look at all reportable communicable diseases together (minus Covid) for the year ending 2023, you will see that we are at our lowest rate in Clark County since 2016."

But to Vance, whether or not Haitian immigrants are spreading disease or eating their neighbors' pets isn't a matter of fact; it's a matter of opinion.

"It is one thing to say that pets are not, in fact being eaten, and another thing to say that anyone who disagrees is trying to murder people. Dissent, even vigorous dissent, is a great tradition of the United States. Censorship is not," Vance said.

For someone writing ad nauseam, Vance seemed strangely concerned with the threat of being censored. He then conflated the spread of disinformation with simply sharing his opinion.

"Their next move with these stories is censorship. In Springfield, a psychopath (or a foreign government) calls in a bomb threat, so they blame that on President Trump (and me). The threat of violence is disgraceful of course, yet the media seems to relish it. They cover a bomb threat, but not the rise in murders. They cover the threat, but not the HIV uptick. They cover the threat, not the schools overwhelmed with new kids who don't speak English."

"The message is always the same: Don't you dare express an opinion on the public affairs of your nation. The message is: Shut up," Vance said.

Vance then encouraged his supporters to say whatever they want, true or untrue, dangerous or not. "I'm asking all of us to reject censorship. Reject the idea that you can control what other people think and say," he wrote after whining for 1,100 words about trying to control what Democrats or the media say.

"Embrace persuasion of your fellow citizens over silencing them—either through the powers of Big Tech or through moral blackmail," Vance wrote. "I think this will make our public debate much better."

Taking things to their logical extreme, Vance concluded, "The reason is simple. The logic of censorship leads directly to one place, for there is only one way to permanently silence a human being: put a bullet in his brain."






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