Beset upon by pink fluff on all sides, like awaking to find yourself trapped in Barbara Cartland’s musty closet, we’re once more in the midst of Race for Life fundraising season. It’s an important and worthy cause, and yet many hearts (soft, kind hearts) can’t help but sink at the pinkification. “I’ll donate later – I promise” is hesitantly mumbled to beaming participants, and donations are quietly given to the main Cancer Research UK branch instead.
Does avoiding the old-fashioned-gender-cliches-for-charity’s-sake make you a monster? Or should charities receive the same criticism other publicity campaigns get when they use tired stereotyping?
Race for Life isn’t Oven Pride, obviously – it works to save lives, helping those impacted by breast cancer and building a community of support. We know this, we agree with the work. But not always so much with the gender-segregation (men are still banned from running in the races alongside women), and its core brand colour that pulses (however unfairly) with negative undertones, highlighted by such campaigns as Think Before You Pink and Pinkstinks – and the documentary Pink Ribbons, Inc.
Working to balance out Race for Life’s saccharine feather boa-and-cupcake prissiness with some grit are today’s grime-caked Pretty Muddy events, aggressive taglines such as “Hell hath no fury like a woman in pink” and adverts with Braveheart-like line-ups of women ready to run. But can there be any escaping the pink central to it all, and its associations?
After all, the rosy breast cancer awareness ribbons used by organisations such as Race for Life only came about after Estée Lauder turned originator Charlotte Haley’s peachy-orange strips to pink back in the 1990s, after researchers found the colour to be the most “non-threatening”. Ad copy can be packed to the hilt with wrath, dirt, and ferocity, but if its core colour was chosen for its non-threatening impact, then any lately adopted roughness comes across as a weak cover for still-fluffy and asinine insides.
Race for Life’s cutesy and sometimes infantile branding (Real Women Wear Mud, apparently) has a gender problem at its heart. And it’s not necessary. Just because a charity is fundraising for a gender-specific disorder or disease, it doesn’t follow that its efforts should be based around outdated gender cliches to gain support. That belongs to another time; not today, not now. In any case, breast cancer doesn’t just affect women: it’s rare, but men can have the disease too.
A counterpoint to Race for Life’s downsides, if you’re looking for some male-focused charity stereotyping, is the Campaign Against Living Miserably’s (Calm) Mandictionary initiative. “Mandictionary” – sounds just terrible, doesn’t it? Down there with the passive-aggressive phrase “man flu”: it’s that low. Bus stop posters for the campaign feature words such as Mantip (“Disposal of a drink when you’re struggling to keep up with your mates”) and Manbaggage (“A puppy [...] used by a bachelor to heighten ‘cute levels’ in parks”) – so far, so much forced machismo bullshit. But then there’s Imangination (“The capacity to believe in multiple definitions of masculinity”) and Mandown (“One of the 12 men who take their life every day in this country”).
Calm are doing something slightly more subtle – aiming to dismantle the stereotypes that men are pressured to conform to by parodying some of the most trite. Many examples are contributed via Twitter and Facebook by men who are hurt by such cliches. It’s an unexpected, clever way to highlight the harm in gender essentialism.
So how do we get more of these different approaches and voices into advertising and awareness campaigns? The IPA’s diversity quota for UK advertising, marketing and communication agencies looking to hire and promote could be one way. Before three years is up, the industry must have 40% women in senior roles and 15% of its senior people from non-white backgrounds. Prescriptive perhaps, but needed in an industry that isn’t moving quickly enough on its own.
Real charity campaigns – and successful marketing/advertising campaigns – don’t make potential contributors feel resistant and uncomfortable about engaging with them. The industry that puts them together needs new voices that we can relate and respond to. Ultimately that’s the best way to make all of us – whatever our gender or race – dip into our pockets.
Early next year, Professor Bart De Strooper will sit down in an empty office in University College London and start to plan a project that aims to revolutionise our understanding and treatment of dementia. Dozens of leading researchers will be appointed to his £250m project which has been set up to create a national network of dementia research centres – with UCL at its hub.
The establishment of the UK Dementia Research Institute – which was announced last week – follows the pledge, made in 2012 by former prime minister David Cameron, to tackle the disease at a national level and comes as evidence points to its increasing impact on the nation. Earlier this year, it was disclosed that dementia is now the leading cause of death in England and Wales. At the same time, pharmaceutical companies have reported poor results from trials of drugs designed to slow down the progress of Alzheimer’s disease, the most common form of dementia.
“Humans have truly wonderful brains that can cope with terrible diseases like Alzheimer’s for decades and can find all sorts of ways to get around defects that are growing inside,” said De Strooper, who is currently based at the University of Leuven in Belgium. “Eventually individuals succumb to the condition and start to display memory loss and other symptoms – but usually only after decades have passed and their brains have gone through considerable changes. This makes it very difficult to treat the disease. That is the challenge that we need to tackle.”
Current understanding of Alzheimer’s suggests the disease is triggered when beta amyloid, a protein in nerve cell membranes, starts to clump together. Slowly the brain undergoes metabolic changes as amyloid clumping continues. In particular, a protein known as tau, which is involved in memory storage, is affected. It starts to form tangles inside the brain’s neurons and these die off. Eventually, symptoms – such as severe memory loss – manifest themselves.
To date, most attempts at drug interventions have focused on medicines that could prevent beta amyloid from forming clumps, the most recent being Solanezumab, developed by the pharmaceutical company Eli Lilly. However, results of clinical trials of the drug – revealed last month – indicated that it had no significant effect on the thinking abilities of people with mild Alzheimer’s. Solanezumab had also failed in people with more advanced versions of the disease in earlier trials.
This double failure has led some scientists to argue that amyloid clumping is not a cause of the disease but is merely a symptom. By targeting it, scientists are wasting time, it is argued. Professor John Hardy, a geneticist based at UCL – who has played a key role in setting up the college’s Dementia Research Institute – does not agree. “All the evidence we have from families affected by early onset dementia indicates that the disease begins with the deposition of amyloid plaques in the brain,” he said. “The trouble is that this buildup starts 15 to 20 years before dementia’s symptoms appear. The drugs we have developed so far offer treatments that are, in effect, too little and too late.”
Hardy drew a parallel between cholesterol buildup in blood vessels that eventually leads to cardiac disease and the buildup of amyloid plaques in the brain and the onset of Alzheimer’s. “Unfortunately, we have no equivalent of a cholesterol test to assess how much amyloid is clumping in a person’s brain,” he added. “However, that could change in the near future.”
Research suggests between 20 and 30 genes are involved in predisposing people to Alzheimer’s. Photograph: Getty
Recent research has pinpointed a group of around 20 to 30 genes that are involved in predisposing individuals to Alzheimer’s. These genes come in different variants. Some variants of a gene predispose individuals to dementia more than other variants of that gene. If a person inherits a package of genes made up of variants that particularly predispose to dementia, they are very likely to develop Alzheimer’s.
“We are now within five years of developing a chip that will be able to tell – from a blood test – whether a person is likely to have amyloid plaques forming inside their brains in middle age,” added Hardy. “This would then be followed up by a brain scan to confirm if this is true or not.”
This would be dementia’s equivalent of a cholesterol test. The problem is that there is, as yet, no equivalent of drugs which would halt this amyloid buildup in a way that parallels the use of statins to block buildups of cholesterol, once detected, and so head off cardiac illness. For their part, researchers argue that the use of drugs like Solanezumab – although seemingly ineffective on patients in whom amyloid plaques have become established – could be far more effective in the early stage of the condition.
Many other issues complicate our understanding of dementia, however. “A good example is provided by the immune system,” said David Reynolds, chief scientific officer of Alzheimer’s Research UK. “There is a lot of evidence now that the immune system is involved in the development of Alzheimer’s after beta amyloid clumps appear.”
However, the nature of that immune response is still not fully understood. “We do not know whether the immune system tends to overreact – as with conditions like rheumatoid arthritis in which the body’s own tissue is attacked by its own immune defences – or react weakly and allow amyloid clumps to develop when they could be stopped,” added Reynolds. “Certainly it would be unwise to wade in with drugs until we know exactly what it is we want to achieve.”
And this is where the distributed nature of the Dementia Research Institute network could prove important. Based in different university cities (Edinburgh, Oxford and Cambridge are all candidates for units), these outlying centres will focus on different aspects of the disease: environmental factors, care of dementia patients – and immunology. “The creation and direction of these centres will depend on existing expertise at that university,” added Reynolds. “A centre that focuses on immunology and dementia would be particularly useful in finding new ways to tackle the condition.”
The Dementia Research Institute network is to be supported, over the next 10 years, by £150m funding from the Medical Research Council – with further inputs of £50m each being made by Alzheimer’s Research UK and by the Alzheimer’s Society. This commitment marks a significant increase in dementia research in the UK, which had already raised its annual funding from £50m in 2008 to £90m in 2012 and is now a world leader in the field.
“It is good news but we need to put it in perspective,” said James Pickett, of the Alzheimer’s Society. “In 2012 we spent more than £500m on cancer research; there are five times more researchers working on cancer in the UK; while the number of clinical trials of dementia drugs is less than 1% of those of cancer drugs.”
At the same time, the need for some form of treatment to tackle dementia is becoming increasingly urgent. More and more people are living to their 80s and 90s when their chances of getting dementia increase markedly. There are currently 850,000 people with dementia in the UK, a figure that will rise to one million by 2025 and two million by 2051.
“We are going to have to be very nuanced in understanding all the risk factors involved in dementia – and in appreciating why factors like education and general health provide some protection against its onset,” said Professor Carol Brayne, of Cambridge. “That is going to be the strength of the institute. It offers us the opportunity, for the first time, to follow so many different avenues and approaches to dealing with and understanding the dementia.”
GROWING THREAT
• ■ Dementia overtook heart disease as the leading cause of death in England and Wales last year. More than 61,000 people died of the condition in 2015, 11.6% of all recorded deaths.
• ■ The Office for National Statistics said the increase had occurred because people were living for longer while deaths from other causes, including heart disease, had gone down. In addition, doctors are now better at diagnosing dementia, and it is appearing more often on death certificates.
• ■ The bulk of dementia deaths last year were among women: 41,283, compared to 20,403 in men.
• ■ According to the Alzheimer’s Society, dementia is the only one of the top 10 causes of death that we cannot prevent or even slow down.
• ■ The leading cause of dementia is Alzheimer’s disease, which accounts for 62% of all cases in the UK: 520,000 of the 850,000 people living with dementia in the UK today. Other forms of the disease include vascular dementia and Lewy Body dementia.
■ •Dementia costs the UK economy approximately £26bn per year, according to the Alzheimer’s Society.
• ■ If a drug could be found to slow cognitive decline in dementia, that would delay the need for paid care and reduce the financial burden on families, the NHS and social care.
In 2013, at a conference on endangered languages, a retired teacher named Linda Lambrecht announced the extraordinary discovery of a previously unknown language. Lambrecht – who is Chinese-Hawaiian, 71 years old, warm but no-nonsense – called it Hawaii Sign Language, or HSL. In front of a room full of linguists, she demonstrated that its core vocabulary – words such as “mother”, “pig” and “small” – was distinct from that of other sign languages.
The linguists were immediately convinced. William O’Grady, the chair of the linguistics department at the University of Hawaii, called it “the first time in 80 years that a new language has been discovered in the United States — and maybe the last time.” But the new language found 80 years ago was in remote Alaska, whereas HSL was hiding in plain sight in Honolulu, a metropolitan area of nearly a million people. It was the kind of discovery that made the world seem larger.
The last-minute arrival of recognition and support for HSL was a powerful, almost surreal vindication for Lambrecht, whose first language is HSL. For decades, it was stigmatised or ignored; now the language has acquired an agreed-upon name, an official “language code” from the International Organization for Standardization, the attention of linguists around the world, and a three-year grant from the Endangered Languages Documentation Programme at the School of Oriental and African Studies in London.
But just as linguists were substantiating its existence, HSL stood on the brink of extinction, remembered by just a handful of signers. Unless the language made a miraculous recovery, Lambrecht feared that her announcement might turn out to be HSL’s obituary.
Three years after announcing its existence, Lambrecht is still unearthing her language sign by sign. She may be the only person in the world who still uses HSL on a regular basis, signing into a camera while a linguist named James “Woody” Woodward and a handful of graduate students from the University of Hawaii document her every move.
Led by Lambrecht, Woodward, and researcher Barbara Earth, the project aims to document what may be the last-ever conversations of native HSL signers. The goal is to record at least 20 hours of high-quality video footage of natural HSL and then transcribe, translate, and archive it. The researchers hope that this work – along with a series of illustrated handbooks depicting over 1,000 signs, and a regular class at the University of Hawaii set to begin next year – will jump-start the revitalisation of HSL.
The project faces numerous obstacles. The first is the scepticism of many of the remaining signers themselves. Hawaii’s tiny Deaf community is deeply divided. Some say HSL is not a real language, others see it as backward; still others are sceptical of Lambrecht.
Illustration by Christian Montenegro
But the gravest threat to HSL is American Sign Language (ASL), which is advancing across the globe – from Hawaii to Thailand to Togo – just as fast as English. The Deaf world, intensely local until recently, is consolidating and globalising in unprecedented ways. And the forward march of ASL, which in certain ways brings people together, also poses a significant danger to many of the estimated 400 sign languages used all over the world – most of which we know nothing about.
Hawaii is a bellwether, but Deaf culture all around the world – for many on the inside it is a “capital-D” culture, not a “lower-case-d” disability – faces threats from every direction. The “mainstreaming” of deaf students means that they are placed in hearing schools, where they are encouraged to be just like everyone else but with “special needs”, in a process that some call deliberate assimilation. Cochlear implants (and the potential of gene therapy) even more fundamentally endanger sign languages – some Deaf activists condemn such “cures” as being akin to genocide.
If the loss of a particular language such as HSL means the end of a whole expressive system, the disappearance of sign language in general – the only fully fledged form of language completely independent of speech – would permanently impoverish human communication.
Like every natural language, HSL is the evolved product of a specific history, the unconscious creation of a community. For it to survive, local signers will have to make a deliberate choice to use it. The same may be increasingly true of Deafness itself. The story of HSL raises crucial questions in an age of globalisation: Do cultures on the margins have a future? Will enough people choose to be that different, and will they do it together?
Though they parallel spoken languages in certain ways, sign languages represent a fundamentally different way of communicating. They neither derive from, nor correspond to, spoken languages. Nor are all sign languages mutually intelligible, as hearing people often assume – they are as various as spoken languages.
Their historical evolution is distinctive. Infants can sign before they can speak, and the great sign language linguist William Stokoe argued that sign may have preceded speech in the history of human language. It’s considered normal for one in 1,000 children to be born profoundly deaf, but places with higher rates of inherited deafness – such as the village of al-Sayyid in Israel and Bengkala in Bali – have been natural hotspots for sign languages.
For sign languages, and for Deaf culture more broadly, intergenerational transmission is far from straightforward. The vast majority of deaf adults give birth to hearing children, while most deaf children are born to hearing adults who have no connection with the Deaf communities.
Signing is not miming, and signs are not just gestures that anyone can immediately grasp
Signing is not miming, and signs are not “just” gestures that anyone can immediately grasp. “Iconic” signs, where the gesture self-evidently expresses meaning, play a role in every sign language, but even they can be wonderfully nuanced. In HSL, for instance, “cry” is signed with spread-finger “tears” running out from the sides of the eyes, while “bawl” has the fingers running straight down. Still, abstraction and convention are essential, just as in speech, because not everything can be expressed with self-evident gestures. There is nothing obvious, for example, about the HSL sign for “man” or “boy”: a spread hand moving down across the head.
For most of recorded history, sign languages have been effectively invisible to hearing people. It was not until William Stokoe’s groundbreaking study of ASL, published in 1960, that any sign language had been analysed as a fully fledged communication system with a grammar of its own. In 1965 Stokoe published an ASL dictionary, also the first of its kind.
Now that the kind of geographical isolation that once bred new languages is no more, sign languages represent something of a final frontier. “We really don’t know how many sign languages there are,” says Albert Bickford of the global sign languages team at the language database Ethnologue. “It seems reasonable to assume that the majority of sign languages currently in use in the world have not been discovered yet,” Victoria Nyst, a linguist at Leiden University, told me.
The most recent edition of Ethnologue, published earlier this year, mentions 141 sign languages. Over a hundred more have been reported, Bickford says, but no solid information on them exists – just the barest indication that Deaf people may sign differently in a particular place. We may never know much about these languages, or even confirm their existence.
Lambrecht’s announcement in 2013was the culmination of a lifetime of work. Born deaf, she hears almost nothing, barely even the noise of a siren blaring in her street. “I grew up very frustrated, thinking I’m not deaf, I’m not deaf, I’m hearing! I want to be an actress, I want to be a dancer, I want to be a movie star!” Lambrecht told me late last year at the University of Hawaii. “I was so frustrated that I couldn’t be those things.”
Teletype, an early form of texting, and closed captioning, which made TV and films accessible, were life-changing developments for her when they became widespread in the 1970s. “After that, I settled down,” she said. “I hated being deaf until that communication barrier broke down, when all those devices came out.”
The youngest of seven children, Lambrecht started signing HSL at home in the late 1940s – learning it from two of her older brothers, who were both deaf like her. She was probably one of the last people anywhere to learn HSL naturally, as a first language, and picking it up from family was particularly unusual. By then, the dorm at Hawaii’s only deaf school was the closest thing HSL had to a homeland – it was there that one of her brothers learned it.
But ASL was already coming in. Soon after the second world war, an unprecedented number of Deaf mainlanders came to Hawaii to work or retire. Within a few decades, ASL was dominant, HSL almost dormant. “We would get a lot of insults, a lot of negativity,” Lambrecht recalled. “Deaf people here would put themselves into an inferior category compared to the people who brought ASL. People said, ‘They’re from America, they’re white people, they know better.’”
Lambrecht made a living by teaching ASL for 33 years, mostly to hearing people, but in her spare time she pursued HSL, tracking down old signers in hospitals and nursing homes. “We used to go to the other islands to drum up people, and now they’re all dead, dead, dead,” her husband, Jeff, said. Interested mainlanders had documented a small number of local signs, and they encouraged Lambrecht to do more. Years in, she realised she had been collecting the remains of a complete and original language.
Without funding and without linguistic expertise, Lambrecht’s efforts stalled until 2007, when a woman named Barbara Earth came to Hawaii and enrolled in her ASL class. After a career working on gender and development in Asia and Africa, Earth was going deaf and wanted to learn how to sign.
Embracing Lambrecht’s cause and digging into HSL history, Earth hunted for money to support the project. Three years later, she found enough for a pilot study, interviewing 19 elderly Deaf people and two children of Deaf adults on four Hawaiian islands. William O’Grady, the linguistics department chair at the University of Hawaii, agreed to host the project at the university: “Barbara knocked on my door and said there was an unknown sign language here in Hawaii, and she needed help to prove that it existed.”
Linda Lambrecht, left, teaches Hawaii Sign Language. Photograph: Eugene Tanner Photography, LLC
An initial estimate of up to 280 surviving HSL signers was soon revised down to 40, then down to just 10 or so old-timers still likely to be competent in HSL. ASL had made deep inroads even among these signers, but there was evidence, especially from Lambrecht’s signs, that HSL was distinct, and lay close enough to the surface to be recovered. Spoken languages such as Basque, Welsh, and Hawaiian have come back from the brink of extinction – could HSL be the first sign language to do it?
For James Woodward, the mass extinctionof sign languages is bound up in prejudice and chauvinism. He believes that every local sign language should have the chance to become a valued, modernised language of education, giving communities a choice and a chance at continuity. Like the spread of English, the triumph of ASL might enable communication, but convenience cannot replace intimacy and history, which people soon forget ever existed.
Related: Signs of the times: deaf community minds its language
One day late last year in Honolulu, I sat in on a gathering that included some of the last active HSL signers. Besides Lambrecht, there were the three other elderly signers who had joined the project within the last year. Their funny and furious signing was almost all in ASL, as usual, but here and there old bits of HSL were surfacing.
“Is this Deaf culture or what!?” Hilda Lopez signed. “I love it, I love it, I love it.” She kissed her own hands as she signed. “HSL is really number one in my life. The ones who don’t like it are small-minded!”
Lopez explained to me that her first name in English is Hilda, but her name sign – her real, everyday name in the Deaf community – is a pointing gesture towards the mouth, based on an incident at her fifth birthday party when someone fired a BB gun and shot out some of her teeth. It’s a classic HSL name sign: blunt, comic and personal, based on physical characteristics and memorable incidents.
Like any language, HSL can be broken down by linguists, but its personality, its characteristic style of discourse, is harder to get a handle on. Even when signing ASL, Lopez seems to embody the HSL style. “When they’re using ASL, people talk too long and make other people bored,” she told me. “HSL is short and thrilling and fast.”
HSL has a bigger ‘signing space’ than ASL – anywhere from the top of the head to the bottom of the torso
HSL has a bigger “signing space” than ASL – meaningful signs can be made anywhere from the top of the head to the bottom of the torso. Signs that occur not on the hands but elsewhere on the body also play an important role. “Kick” is signed only with the leg, for instance, while a raised eyebrow is a vital bit of grammar, signalling a yes or no question, or a conditional clause beginning with “if”. The “vocalisations” accompanying certain signs, which fellow signers can sometimes lip-read, echo different spoken languages: borrowed words from Hawaiian, English and Hawaii Pidgin.
Lopez thinks and talks to herself in sign. “I’m 100% Deaf!” she said proudly. “I don’t hear sound, but I can feel it, I feel the body vibrations in my chest: bass drums, police sirens. The only thing I can hear is fireworks — I don’t like the smell of them, they make me sick, but I like the noise and vibration.”
Lopez never knew her biological parents, but she is fiercely proud of her Native Hawaiian and mixed-ethnic roots. At least one piece of evidence, an 1821 letter discovered by Barbara Earth, seems to link HSL to the Native Hawaiian past. In that year, an American missionary, newly arrived in the Kingdom of Hawaii, met a deaf man and bargained with him over 40 sticks of firewood and a pig. Some of the man’s signs were “in common use”, seemingly among both deaf and hearing people, wrote the missionary. The signs he recorded for “pig”, “money”, “see”, and a system of counting by clapping, are still present in HSL today.
The rate of inherited deafness in Hawaii is normal. But by the late 19th century, waves of Japanese, Chinese, Portuguese and Filipino immigrants were coming to Hawaii to work on the American-run plantations, and a new multi-racial Deaf community took shape in Honolulu, including boot shiners, launderers, and flower sellers. There was even what a contemporary newspaper called a “fancy deaf wedding”, where 80 of the guests used “the sign language”.
“The turning point, the beginning of the end of HSL,” according to Barbara Earth, was the founding of Hawaii’s deaf school in 1914. Like most schools at the time, it promoted oralism, the system of lip-reading and speaking that is almost universally despised in Deaf communities for being painful, unnatural and ineffective. But for a while the school was also a unique environment for the clandestine transmission of HSL. One former student, Norman Galapin, told me that he learned HSL “on the playgrounds and in the dorm”, though “if the teacher saw you signing, sometimes they would slap your hands, or hit you with a ruler, or pinch your cheek.”
During the 1940s, HSL was already a language in transition, according to Galapin: “They weren’t using the old [HSL] sign for ‘mother’, they were using this [ASL] one, but they were still using the old sign for ‘father’.” Starting in 1939, a few charismatic teachers from the mainland played a vital role in overturning oralism and legitimising sign language, but they ended up promoting ASL over HSL in the process.
Employment, education and access to government services – from court interpreters to mental health provision in sign language – were perennial problems in the community, but many deaf Hawaiians thrived as master carpenters, printers, mechanics, postal workers and even ukulele makers. As elsewhere, an informal Deaf Club was at the centre of an unusually tightknit community, organising Christmas parties, bowling nights and an annual summer camp-out on the beach, with up to 100 people fishing and cooking for two weeks straight.
Yet Hilda Lopez, like many Deaf Hawaiians, left Hawaii for the mainland for education and for work, arriving in California in her teens. The culture shock was intense: “It was all ASL, and I wasn’t really comfortable with it,” she said. “People seemed to know so much, I felt that I wasn’t very smart…. I got confused and I lost HSL, I didn’t really remember it any more.” Only now, haltingly peeling away the layers of ASL, is she starting to reclaim the language.
No other sign language comes close to having the influence of ASL. Accurate, up-to-date signer numbers do not exist for any sign language, but most of the larger ones are not even yet secure in their own countries. There are more than 20 million deaf people in China, for instance, but Chinese Sign Language, which has hardly been documented, has only been acknowledged as a distinct language for the last 30 years.
By comparison, ASL is a powerhouse, supported and promoted by institutions such as the National Association of the Deaf, and Gallaudet University in Washington DC, which describes itself as “the world’s only university with programmes and services specifically designed to accommodate deaf and hard of hearing students”. Gallaudet plays a critical role in the American Deaf community and in the life of ASL. Until recently, the university supported both a college prep centre in Honolulu (to ensure qualified deaf applicants to Gallaudet) and ASL interpreter training in Hawaii (to bolster ASL more broadly).
Linda Lambrecht having a conversation in Hawaii Sign Language, Honolulu. Photograph: Eugene Tanner Photography, LLC
ASL may now be going global, but the language is at least partly rooted in local sign languages that have long since gone extinct. French Sign Language was the first modern, “methodical” sign language, codified in the 1760s and 70s for formal instruction from existing signs used in the Deaf community of Paris by the Abbé Charles-Michel de l’Épée. When America’s first school for the deaf opened in Hartford, Connecticut in 1817, French Sign Language was imported and likely fused with a handful of existing New England sign languages. The result was ASL. (British Sign Language, dominant in the UK but only granted official status in 2003, is not directly related to ASL.)
Today, there are at least 500,000 ASL signers in the US, while ASL and ASL-derived sign languages are also widespread across the Caribbean, the Pacific and much of Africa and south-east Asia. The language’s increasing dominance in countries on every continent reflects the strength of Deaf culture in America and the role that well-meaning American missionaries and educators have played in spreading Deaf education through ASL.
In the past, James Woodward told me, missionaries would often tell deaf people in other countries that they didn’t have a language. “It’s improving now,” he added, “but I saw that going on as late as 1999 in Thailand, when some Americans came over. I think there’s a growing awareness in the Deaf community in the US of how ASL has really endangered many other sign languages, and even destroyed some.”
As with English, prestige plays a major role in the growth of ASL. The linguist Victoria Nyst has written that “signers in West Africa tend to perceive ASL-based sign languages as being superior to sign languages of local origin.” Similarly, Misella Tomita, a young Gallaudet graduate from Hawaii, described visiting the Netherlands and seeing everyone using ASL rather than Dutch Sign Language: “I felt like ASL is taking over the world.” Closer to home, Woodward has studied Black ASL, which seems to have evolved in the second half of the 19th century at segregated deaf schools in the southern US. The dialect, which is an inspiration to Lambrecht, carries a heavy stigma and has become highly endangered. Almost all black signers now use standard ASL.
At the Hawaii School for the Deaf and Blind, ASL became the standard in 1960. Today, more than half the teachers are Deaf and students are expected to sign ASL while learning to read and write English. HSL is only used, occasionally, by one dedicated teacher, and Linda’s proposal to teach the language there was turned down.
“I think ASL is the reason for the decline of HSL,” Woodward told me matter-of-factly, but then added: “You can’t really separate the personal issues from the linguistic issues.”
The impending disappearance of a language puts enormous stress on a community. For years, the last two fluent speakers of Ayapaneco in Mexico were not on speaking terms, until outside pressures and incentives convinced them to reconcile. According to William O’Grady, one language with just 60 speakers has four competing writing systems. In any community that speaks an endangered language, there are often groups who think the language is not worth saving. “But usually when it’s too late, there’s a deep sense of regret,” O’Grady said.
In Hawaii, the remaining community of HSL signers is deeply divided. Lambrecht is the face of the language, but as a past president of the Aloha State Association of the Deaf (ASAD), she is on the opposite “side” from many of the older signers, who belong to a group known as the Diamond Head School Alumni (after the former name of the deaf school).
The impending disappearance of a language puts stress on a community. The remaining HSL speakers are deeply divided
The two organisations are the institutional expression of a seemingly intractable split in the Deaf community that dates back to at least the 1970s. Some explain it as generational, historical and linguistic, but it is also personal, visceral and mysteriously self-perpetuating. In 2014, when the deaf school marked its 100th anniversary, there were two separate celebrations: one for the Diamond Head group, one for the group Lambrecht is a part of. “I feel like it’s just natural now, this fighting,” Lopez told me.
Because HSL was in retreat by the 1950s, most younger Deaf people can hardly sign in the language – there was virtually nowhere for them to pick it up. Many take great pride in their identity as Deaf Hawaiians and emphatically support HSL as a symbol of that identity. But some of the most fluent of the older HSL signers, in the Diamond Head group, are deeply ambivalent about reviving the language. “Even though they use it in their conversations, they don’t feel that HSL is a real language,” said Darlene Ewan, a community activist who teaches at the deaf school.
Early on, Wanda Andrew, who is part of the Diamond Head group, warned off the researchers: “I said, ‘To tell you the truth, for HSL it’s too late, it’s dead,’” she told me. “The loss of HSL is sad, but it was just sort of a mixture of everything, like chop suey, just kind of like an accent.” For Andrew, who is in her 70s, ASL enabled a cosmopolitan life, from studies at Gallaudet to decades on the mainland and eventual marriage to a Deaf Australian man.
Explaining why some keep their distance from the project, Andrew added that “People will just say they don’t want to, because they don’t want to work with Linda.” She continued, “And if they don’t remember [signs], then they just don’t remember [them]. Or they might be afraid of what it’s for, or they don’t want to feel dumb… I don’t support Linda, I think she’s a little narcissistic.”
Others close to the Diamond Head group agreed that personal animosity and questions of authority – whose signs to record and revitalise? – are part of the problem. Lambrecht’s supporters counter that she has almost single-handedly led the revitalisation effort. Lambrecht herself points to the lingering power of the stigma: “HSL is in their hearts, but they’re resistant. They want to be modern.”
The divide, which has implications for how the language is documented, is now reflected in a similar rift between the researchers. Earth and Woodward now acknowledge that ASL must have had a deeper impact than was initially understood, obliterating HSL and leaving in its place a hybrid of ASL and HSL that Woodward calls CHSL (Creolised HSL).
Earth believes that when signers refer to HSL today, they may actually mean CHSL – a view Woodward does not share.After meeting more members of the Diamond Head group, Earth argues that CHSL is the only thing left: “I have never seen pure HSL. Fewer and fewer old folks retain strong HSL elements… They cannot recover pure HSL because they never knew it.” Woodward counters that “the past two years have shown that Lambrecht is using a different language from CHSL” – during recording sessions where Earth, increasingly estranged from the project, was not present.
The signs for “blue”, “green” and “yellow” have become a particular flashpoint in this dispute. Woodward argues that Lambrecht’s distinctive signs for these colour terms make semantic sense, because they are clearly related to the HSL signs for “water”, “bamboo” and “pineapple”. But other signers were incredulous, saying they had never seen the signs before and suggesting that they might be specific to Lambrecht or her family. Their own signs for those colours were basically ASL, and they couldn’t remember any others that might be original to HSL. Earth felt that the pressure to find such “original” non-ASL signs risked distorting the research.
“If no other person has a sign and Linda has a sign, I don’t know what else to do except use her sign,” said Woodward, who worked with the last known signer of Chiang Mai Sign Language in northern Thailand before he died of complications from diabetes in early 2015. Lambrecht’s signs for “blue”, “green”, and “yellow” are likely to be the standard for teaching HSL going forward. “If there’s only one person left,” Woodward said, “then that’s what you have to document.”
Now in its final month, the three-year project to document and revitalise HSL has made progress, but the hardest work remains ahead. “We haven’t been able to do everything we wanted,” Woodward told me recently. He is applying to the Endangered Languages Documentation Programme for a six-month grant extension. Even now, he said, the team is still finding new signs.
While she continues her work with Woodward, Lambrecht is looking beyond Hawaii, since ASL is spreading to other islands across the Pacific: “I want to tell people there: it’s not that you’re stuck with your local sign language, you can borrow signs from ASL, but please don’t throw out your local language.” Woodward believes that many of the Pacific’s innumerable islands had, or may still have, traditional, indigenous sign languages of their own – he has already identified one on Majuro, one of the Marshall Islands.
“Time is passing quickly,” Lambrecht said the last time I talked to her. The oldest signer who had joined the project, a Japanese-Hawaiian woman named Mildred, was dying. “I remember Mildred would always tell me, ‘I don’t like HSL, I like ASL, it’s for educated people like me,’ and I would say, ‘No, no, no, it’s our local language!’” Mildred was seen as one of HSL’s remaining masters, but she had been reluctant to sign for the camera when I visited last year.
Then in February, Linda told me, Mildred had a bad fall and went to the hospital. She couldn’t walk and was now under hospice care, living with her son. Linda visited her recently: “I saw her signing – and I noticed that she had reverted to HSL. We were just shocked. The others didn’t understand her, I said let me translate. Now when I visit her I try to catch every story I can, while she’s still here. Next time I go I really want to bring the camera and record her.”
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Off the coast of California, almost 20,000 feet under the surface of the Pacific Ocean, scientists from the San Diego Institute of Oceaneography are collecting samples of marine daily life from the ocean floor. At initial glance, these little clumps of sediment may seem nothing unique, but the micro-organisms which lie within might 1 day provide an response to one particular of the most urgent troubles in modern healthcare: the global antibiotic resistance pandemic.
To place the scale of the problem in perspective: the Ebola epidemic in West Africa captured the headlines in 2014, and in total the virus accounted for just above eleven,000 fatalities, producing it as the most devastating outbreak of the virus in history. Recent estimates area the annual quantity of deaths from antibiotic resistant bacteria at about 700,000 globally. Except if things alter this figure is predicted to rise to ten million by 2050, with increasing numbers of bacteria presently fully resistant to every clinical antibiotic obtainable.
Speaking at the current Uppsala Wellness Summit, Professor Otto Vehicles described resistance to antibiotics as “a silent tsunami, crumbling down the pillars upon which modern day medication is constructed.” Vehicles, who has spent decades campaigning for awareness on the topic, describes the problem as one particular of complacency. Although antibiotic consumption has increased by 36% in the past decade, no new courses of these medication have been identified since the 1980s.
In June, the Planet Health Organisation unveiled a global action program to tackle antibiotic resistance. One of the stated aims is to have a whole new class of antibiotics in development by 2019.
Associated: The hunt is on for new antibiotics | Jenny Rohn
But is this actually feasible? To understand the problems, it’s essential to appear at how bacteria turn into resistant in the 1st place.
“The most common way this occurs is via the acquisition of genes from other resistant bacteria,” says Gerry Wright, a chemical biologist at McMaster University in Ontario, Canada. “Bacteria are quite promiscuous and the most surprising issue we’ve realised above the previous 60 many years is just how swiftly this gene sharing happens. They typically obtain these resistance genes in packages, giving them resistance to numerous antibiotics at the exact same time, and that’s a major problem in hospitals. Resistance also develops through chance mutations in the course of DNA copying when bacteria reproduce. This is believed to be how bacteria became resistant to rifampin, a drug utilized to treat tuberculosis.”
At the molecular level, such mutations can stop an antibiotic getting into the bacteria cell at all, altering the target molecules so that they do not bind to the antibiotic anymore, or enhancing the efficiency of efflux mechanisms inside of the bacteria which permit it to merely pump a drug back out once more. Certain genes, if acquired, can actively degrade antibiotics, limiting their effectiveness once they’ve entered the cell.
In purchase to discover brand new medicines capable of destroying these mutant bacteria, many scientists are turning back to nature. At the University College London College of Pharmacy, Simon Gibbons is searching at the chemical compounds which give specified plants their antiseptic properties.
“Instead of just focusing on killing resistant bacteria, we’re also looking at ways of altering them to make them susceptible once more,” he says. “We have a couple of projects hunting at chemicals which can inhibit antibiotic efflux in bacteria, and other molecules which can inhibit the transfer of plasmids. Plasmids are small DNA molecules which spread antibiotic resistant genes amongst bacteria.”
Gibbons is monitoring a clinical trial hunting at a compound discovered in bearberries. This chemical is utilised to deal with cystitis, an infection triggered by E.coli bacteria, by either killing them or avoiding them binding to the urinary tract. Scientists are interested in no matter whether it is just as effective at dealing with other microbes.
Related: Anglo-Saxon antibiotics are just the begin | Vanessa Heggie
Even so, not absolutely everyone is convinced that plants are the most probably source of compounds capable of dealing with the world’s most virulent bacteria. “We do not have a lot of plant-derived anti-bacterial agents due to the fact of the evolution scale,” says Richard Lee, a researcher at St. Jude Children’s Study Hospital in Memphis. “Plants evolve slowly although bacteria are the actual opposite, so plants have a tendency to use non-particular approaches to fight bacteria which are tougher to translate into human therapeutics.”
In excess of the previous 80 years, the primary focal level of the search for new antibiotics has been soil microbes, and the variety of substances they create to destroy each other as element of their ongoing chemical warfare. But until not too long ago, we haven’t been specially adept at trying to keep them alive in the lab for lengthy enough to get their weapons for our personal use.
Final year, scientists in the US and Germany developed a novel technique which led to the discovery of a substance referred to as teixobactin, which they believe has the likely to turn into the very first new antibiotic given that 1987. Teixobactin has the ability to destroy some of the most dangerous drug-resistant bacteria, this kind of as MRSA, and has a extremely low prospective for the advancement of resistance – but it is ineffective towards the most difficult-to-deal with family of all: gram-unfavorable bacteria. These bacteria create resistance exceptionally speedily due to their speedy DNA sharing, which has noticed them evolve an further protective cell membrane and sophisticated efflux.
To target them, scientists are turning to daily life in some of the most far-flung corners of the planet. Organisms residing thousands of feet beneath the ocean surface have evolved their own exclusive techniques of defending themselves towards microbes in excess of millions of many years, most of which are still unknown. A compound referred to as anthracimycin, developed by a distinct bacterium living in the depths of the Pacific, has demonstrated possible but finding this kind of compounds is just a little part of the challenge. The largest problem is finding individuals which are not toxic to people. “Bacteria, humans and all residing creatures, share the same biochemical mechanisms that are essential to daily life,” Wright says. “But these are usually the items that antibiotics target. A single way to kill a bacterium is to punch a hole in its membrane, but you need to have to locate some thing that selectively punches holes in bacteria and not human cells.”
Gibbons feels the WHO’s 2019 deadline is unrealistic. “There’s a good deal of operate from easy testing to security testing, and then animal designs involving mice or rabbits, before you even feel about a clinical trial. And you have to demonstrate that you can generate sufficient of the substance itself. So I doubt we’ll see any new lessons of antibiotics till 2021 or 2022 at the quite least.”
Associated: Fighting bugs with bugs: this time it is personal | Jenny Rohn
Due to such troubles, other people are alternatively searching at redesigning outdated, discarded antibiotics to enhance their stability and effectiveness. Some have been originally abandoned because they only worked on a small handful of bacteria, but now it’s thought that a range of far more narrow spectrum treatment options could be a greater way to avoid driving resistance.
Lee is presently studying spectinomycin, an antibiotic launched in the 1960s to treat gonorrhoea, ahead of becoming cast aside as it only worked in enormous doses. He believes that a remodelled version has the possible to operate well towards a variety of respiratory tract infections and sexually transmitted illnesses.
“The drug has often been very secure, and fifty years on we now know its crystal framework,” he says. “So we can exploit that along with all the outdated expertise from the pharmaceutical organizations who experimented with to produce it in the 1980s, to increase its design and aid it accessibility the target bacteria much more effectively.”
Of program, some bacteria will ultimately grow to be resistant to spectinomycin and other outdated antibiotics, but Lee believes that it is feasible to style these medication so this comes at an evolutionary expense to the bacteria.
“Because of how they work, some antibiotics are just more difficult for bacteria to produce resistance against,” he says. “And while mutated bacteria might be able to evade the drug, they could not be capable to survive as nicely and for as prolonged. So you could become contaminated but it won’t be as virulent and threatening.”
But establishing a new product from scratch or even rewiring an previous 1 comes with significant charges and challenges, and so there are many scientists focusing exclusively on approaches to make our present antibiotics beneficial once much more towards resistant bacteria. 1 popular idea is combination therapy – combining several medicines together to kind a cocktail mix which is the two a lot more potent and hard to evade.
“Over the previous decade we’ve located that particular genes vital for the life of the bacterium, interact with a number of other genes in the cell in a complicated internet-like vogue, significantly like pages on the world wide web,” Wright says.
Associated: Resistance isn’t futile – how to tackle drug-resistant superbugs
“So our notion was, if we combine antibiotics with other molecules and use people combinations to target this internet in various random fashions, possibly we can unexpectedly enhance antibiotic exercise or conquer bacterial resistance in new approaches?”
Such random screening required vast numbers of drug combinations to be tried and tested, a thankless needle-in-a-haystack process which would have taken many years of labour in decades gone by. But with 21st century robotics technological innovation, Wright and his colleague Eric Brown are capable to display 1000′s in a mere afternoon.
There can still be sudden drawbacks as it is usually challenging to match the publicity of two medication at the site of infection to see the wanted effect.. Wright and Brown thought they’d struck gold with a mixture of the antibiotic tetracycline with a drug referred to as imodium, employed to treat diarrhoea. Imodium enhanced tetracycline’s ability to penetrate bacteria, but more testing showed this only worked in the gut, limiting its usefulness.
“The different is to have a single drug that concurrently hits a number of , frequently relevant bacterial targets generating resistance tougher to produce,” Lee says. “This is a serendipitous technique applied by several at the moment successful antibacterial agents including fluoroquinolones and beta-lactam antibiotics. But from a de novo discovery angle this is technically significantly tougher to do.”
As a result, some really feel the right combinations of drugs have main benefits when it comes to creating viable products. Provided that the individual medicines themselves are known to be protected, and can be produced in large quantities at a realistic price, the path from lab to clinic ought to, in theory, be much quicker and significantly less high-priced.
Wright believes blend therapy is the primary way forward, just as combinations of antiviral medication proved to be the way to handle HIV. “With multiple molecules, bacteria often have to produce resistance to every a single. And with 3 or even four molecules with each other, there is significantly less and much less chance of this in fact happening.”
Last yr, I did one thing that I swore I’d in no way do. No, not Botox (dread of needles nevertheless just about outweighs dread of looking like a bull seal with mumps). I took out private wellness insurance coverage. I’ve constantly relied on the NHS. It brought my darling infants into the world. It brought my mom back to me right after a heart assault. But I’d had a poor scare, one of those intimations of mortality that arrive like a shower of arrows after you turn 45. I asked the advisor to give me his honest view on whether health care insurance was well worth it. “To be brutal,” he mentioned, “if you get 1 of the rougher cancers there are new medicines coming on-stream which could extremely effectively save or prolong your lifestyle. But the NHS will not be capable to afford them. Things will get increasingly hard and unpleasant over the up coming handful of many years. If you can afford personal insurance coverage, I suggest that you go for it.”
When did you last hear a politician say anything that candid? They are far too occupied vying to outdo every single other in their protestations of undying love for the NHS. Frankly, if the get together leaders’ Tv debate goes ahead, I fully assume David, Ed and Nick to wear T-shirts with the slogan: I (Heart) the NHS A lot more Than Him!
With fewer than a hundred days to go right up until the basic election, Cameron, Miliband and Clegg remind me far more and a lot more of the 3 fulsome suitors for Portia’s hand in The Merchant of Venice. When Nigel Farage dares to suggest that the existing NHS model is unsustainable, the affronted trio cries as 1:
“O sinful imagined! By no means so wealthy a gem
Was set in worse than gold. They have in England
A coin that bears the figure of an angel
Stamped in gold, but that is insculped on.
But right here an angel in a golden bed.”
An angel in a golden bed would do very effectively as a emblem for the well-liked image of the NHS. But, hang on a minute, what’s this? That golden bed is tarnished and sagging with age. The sheets haven’t been altered and the poor angel is obtaining to drink water out of a flower vase since 1 knackered nurse and a clueless temp from an agency can’t seem soon after twelve sufferers.
This kind of is the NHS’s talismanic energy, that voters continue to be wedded to a taxpayer-funded model of “free” healthcare, even even though NHS leaders are panicking about a fearful, £30billion black hole. In June last yr, 71 NHS professionals stated in a bleak letter to The Guardian that the services was “not developed to cope with the care requirements of the 21st century” – specially numerous extended-phrase problems and an more and more elderly population. The signatories chastised political events for not even mentioning the fiscal challenges faced by the NHS during the 2010 election and warned of catastrophic consequences if they ducked the query this time.
Are they nonetheless ducking? You bet they are. Overall health is the chosen battleground for May’s election and the initial casualty is truth. Ed Miliband has mentioned, really disgracefully, that he ideas to “weaponise the NHS” to beat the Tories. And there you have it: the ailing are to be part of a vote-winning arms race. As former overall health minister below Tony Blair, Alan Milburn, pointed out yesterday, Labour retreating to its “comfort zone” and promising to throw far more money at the NHS without having producing vast structural modifications is a recipe for disaster.
Meanwhile, the rationing of cancer drugs that my consultant predicted is previously occurring. If you have terminal lung cancer in France or Australia, Germany or the US, you will be offered a drug that will prolong your lifestyle for up to two and a half many years, and which will make individuals last precious days on Earth excellent ones. Not in England, though. Of 84 treatments offered to NHS individuals by a particular Cancer Medication Fund, 25 are about to be “delisted” – 5 therapies for bowel cancer, 4 for leukemia, 3 for breast cancer and so on. The terminally unwell should be authorized for the drugs by April or, fundamentally, they can snuff it. Now, that is what I call a deadline.
Lying politicians insist that, if we move to a dual model of funding, by private and public sectors, the consequence will be a “two-tier system”. And what do they feel we have now? From April, a wealthy man or woman with cancer can pay to extend their daily life even though a bad person are not able to.
When she moved to Australia with its dual-funded program, my NHS-loving sister was reluctant to make use of personal health insurance coverage. Sooner or later, the Government manufactured it so desirable that she overcame her scruples. Is the consequence an evil, divisive, two-tier program? Funnily enough, no. It’s an extremely nicely-financed healthcare support which can afford to give state-of-the-art medicines to (itals)all(enditals) Australians, not just the privileged couple of. Exactly where my sister lives, in the state of Victoria, there is a legal minimum ratio of nurses to patients. You will discover no distraught elderly men and women in Melbourne hospitals consuming from flower vases.
A journalist when put a proposition to Ed Miliband. If he could demonstrate that an element of private provision in the NHS enhanced outcomes for patients, would Miliband agree to it? “No, replied the Labour leader, “because it would damage the ethos.”
He sounds like a firebrand defender of the faith, refusing to admit the require for doubt or reform and accusing anybody who even suggests them of sacrilege.
So here’s one more query for Miliband. From April, when a mother of three modest youngsters in Walsall or Warwick or Wantage – let’s get in touch with her Jane – is dying of ovarian cancer and can’t have the drug that may possibly give her another twelve months, what are you going to say to her, Ed?
“Terribly sorry, Jane. If we had a sensible healthcare program like other Western nations, funded by a combine of public and private, we could buy you all the medicines you need to have and a precious added 12 months with your loved ones. But I can’t allow that take place in the NHS because it would injury the ethos.”
British guys and woman are literally dying because of the cowardice of politicians. They tell the folks what they want to hear, as an alternative of what they need to hear. If the NHS is our nationwide religion and saying this can make me a heretic, then so be it. There is much more likelihood of calling an ambulance in south Wales and having it turn up in below an hour than there is of the primary events admitting the persistent state of the NHS they declare to adore so significantly. That is shameful. Really, it is sick.
A lack of info has restricted the influence of individual budgets amongst folks from black and minory ethnic backgrounds, says Jabeer Butt. Photograph: Alamy
Simon Stevens, NHS England’s new chief executive, has announced a “dramatic extension of patient power”, by delivering money for vulnerable sufferers to get their wellness and social care. While individual budgets are not new, the dimension and scale of the roll-out is unprecedented.
Stevens’ announcement is very likely to be met with widespread service user, carer, public and cross-get together help. For the most portion this is a outcome of personalisation, in concept, providing people much more selection and management above their lives by making it possible for them to decide on well being and social care providers tailored to their certain needs. The argument often articulated, and repeated by Stevens, is that private budgets will allow patients/support end users to pay out for help this kind of as carers, physiotherapists and psychotherapy sessions to bridge present gaps in wellness and social care and in the long run to support them to remain out of hospital.
Nonetheless, whilst the possible of higher numbers attaining personalised care is clear, new study from the Race Equality Foundation suggests that the reality may be less so, especially for people communities who are often regarded as becoming challenging to reach. The difficulties knowledgeable by black and minority ethnic groups when engaging with mainstream health and social care providers are broad-ranging and nicely-acknowledged: whether it is those younger African Caribbean guys who need to have assistance with their mental wellbeing, but are reluctant to engage with mental overall health providers due to past bad experiences or whether or not it is older Asian folks who struggle to locate care residences who are able to meet the practical or dietary needs of their faith. In concept, personalisation supplies the possibility for black and minority ethnic and other folks to physical exercise higher handle in selecting solutions and overcoming the barriers that presently indicate their needs are not constantly met.
Our newly published briefing paper suggests that there are a quantity of motives that this may not come about. Evidence suggests a lack of available info about personalisation has limited uptake of personalized budgets by folks from black and minority ethnic backgrounds. This appears to be combined with a reluctance to undergo assessments. In addition there is a dread that benefits and companies will be minimize or modified. Worryingly, this dread has been compounded by a lack of suitable advocacy and support. This is specifically crucial as appropriate advocacy solutions have helped men and women apply for personalized budgets or recruit personalized assistants in a position to realize and meet their particular cultural wants.
Such problems have been exacerbated by stereotyped concepts among some professionals about the extent of family help available within some communities, with a developing physique of proof showing the issues faced by carers of men and women from black and minority ethnic groups. In specific, black and minority ethnic carers may possibly locate themselves far more isolated from mainstream help providers, whether or not due to diverse cultural expectations about asking for assist, limited possibilities to get a break from caring or merely a lack of awareness of mainstream solutions.
In addition, the original vision for personalisation integrated a concentrate on early intervention and prevention, creating social assets, and bettering entry to solutions this kind of as leisure and transport, access to info and advice on care. Even so, our paper suggests that the funds that are made available are frequently utilized to meet the quick care requirements and are not of the scale that may offer opportunities to lead a more lively and fulfilled lifestyle.
So Stevens’ announcement whilst welcome will need to have to be accompanied by important adjust to ensure that groups such as black and minority ethnic communities are equally in a position to benefit. Funding smaller sized local community-centered organisations to carry out advocacy, outreach, and care will need to be component of the change. But also making certain mainstream companies correctly attain out, engage and help these tough to attain groups will be crucial to ensure well being and social care is actually individual.
Jabeer Butt is deputy chief executive of the Race Equality Basis
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He calls some of the trial results “mind-blowing”, especially in the therapies that attack a tumour’s stealth techniques. “It’s been totally dramatic to watch perform out. The cat-and-mouse game that goes on among tumours and the immune program – I did not know it was that essential. No-a single did.”
Dr Roy Baynes, senior vice-president of clinical research at Merck, says he believes the area is going through a “watershed” moment. “The volume of material [on IO at Asco] this yr was virtually unprecedented,” he says.
The notion of utilizing immunotherapy towards cancer initial emerged in the early Nineties, but the current generation of therapies only surfaced in the past handful of many years.
Bristol-Myers Squibb (BMS) is so far the only company to get a drug of this type accredited, but numerous of the world’s main drug-makers have joined the race for a slice of a market place thought to be well worth tens of billions of bucks a year.
Other businesses are hopeful that newer drugs, focusing on a diverse component of the cancer “stealth cloak”, might demonstrate much less risky than BMS’s drug, acknowledged as Yervoy, which has some severe side results. BMS also has different medication in its pipeline.
The eventual size of the IO market hangs on two crucial variables: by how a lot it can improve survival and how several kinds of cancer it can function on. Final week’s meeting of Asco showed guarantee on both fronts.
Several drug-makers unveiled early information showing dramatic enhancements when IO was used in mixture with other medication.
BMS said 79pc of the 53 melanoma individuals treated with a blend of Yervoy and another immunotherapy survived for at least two many years.
AstraZeneca strategies to launch clinical trials testing various combinations of its most advanced IO drug with its other cancer medicines later on this 12 months.
There was also a wave of trial outcomes suggesting that IO could be utilized to deal with tumours in the bladder, head and neck. If scientists can develop on this proof, it would mark a significant expansion of the prospective for the remedy, which has so far targeted on melanoma and kidney cancer.
The Swiss drug giant Roche supplied the initial proof that IO could perform in innovative bladder cancer. Its experimental remedy shrank tumours in 13 of the thirty patients in the trial. The tumours fully disappeared in two sufferers.
“This is by far the most fascinating treatment method that I’ve tested on bladder cancer,” mentioned Dr Thomas Powles, a health care oncologist at Barts Hospital in London, who led the clinical trial. “It worked significantly more rapidly than we anticipated and considerably a lot more dramatically.”
Merck showed off data on its leading immunotherapy remedy, from trials on advanced head and neck cancer, in which eleven of the 56 patients responded to the treatment.
But most interesting of all are indicators that immunotherapy could work in lung cancer, the most significant killer of all with an annual death toll of 1.5m.
Roche has presently began a massive-scale clinical trial on lung sufferers employing the same drug that has proven promise in bladder cancer.
Merck and Bristol-Myers Squibb are also leading the charge on this front.
The pair of US businesses both unveiled information at Asco showing that their respective “checkpoint inhibitor” medication had an effect on lung cancer.
Merck’s MK-3475 remedy shrank tumours in 28 of the 35 sufferers on which it tested the drug.
BMS also demonstrated that its drug, nivolumab, may well perform in lung cancer. The best benefits had been in twenty individuals acknowledged to have a particular kind of cancer cell, half of whom responded to the remedy.
AstraZeneca is not far behind. Its experimental immunotherapy, recognized as MEDI4736, made such promising benefits in lung cancer patients that it was fast-tracked to late-stage testing only 18 months following the initial tests in humans.
Justin Stebbing, professor of cancer medicine at Imperial College London, is operating clinical trials making use of IO on sufferers with lung cancer and says the final results search “really hopeful” presently. “If we can take some of these patients and induce lengthy term remission, that will modify almost everything,” he explained.
“The [previous] concept of in which immunotherapy may possibly function has been shattered,” additional Michael Giordano, head of oncology at BMS. Its Yervoy, which at existing is only accredited for use in so-known as metastatic melanoma, is a situation in level. BMS presented a string of information at Asco indicating that the drug could assist to beat off a return of melanoma soon after it has been surgically removed.
The drug-maker is also testing out nivolumab on individuals with kidney, blood, breast, gastric, brain, colorectal and pancreatic cancers.
Massive Pharma has largely centered on the stealth-cloak busting technique, but drug-makers are exploring other approaches also. Novartis is establishing a treatment method which entails taking blood out of a patient and re-programming the “killer cells”, or T-cells, to make them even more strong.
It has tested this method in around forty individuals with a deadly blood cancer recognized as acute lymphoblastic leukaemia and discovered that tumours completely disappeared in 80pc of circumstances.
Alessandro Riva, head of oncology advancement at Novartis, says this kind of response had never before been noticed in this illness.
“It’s like producing an armed robot,” said Paul Highams, chief executive of immatics – a personal German company working in IO. “Natural T-cells are great but you can improve them by putting much more weapons on them”.
Immatics’ specialty is cancer vaccines which is a associated branch of IO.
The way these treatments operate is to train the body’s immune program to recognise the subtle distinctions in between cancer cells and standard cells that it may not otherwise select up on.
The business is in the sophisticated phases of establishing a vaccine for kidney cancer and has a number of much more candidates in the pipeline.
Final year, it signed a deal with Roche in which the Swiss drug giant will get on the improvement of some of immatics’ early stage study and develop new joint goods.
Scancell, a business spun out of Nottingham University in 1997, is also developing cancer vaccines.
Cancer immunotherapy has the potential to produce many winners between drug organizations big and tiny – Andrew Baum at Citi believes the market place could swell to $ 35bn (£21bn) yearly, and that IO will perform a element in at least 60pc of cancer instances.
But whoever emerges between the foremost pharmaceutical players, 1 factor seems nearly certain: individuals will commence benefiting hugely from these advances.
Prof Hafler says that, in melanoma at least, there is “no query these drugs now supply the hope to individuals for condition-free remission”.
Dr Powles is also hopeful. “At occasions the oncology local community can get more than-thrilled. But this does look like some of that optimism is justified.”
