Politics and protocol leave Indian teen"s life in the balance pending TB drug ruling | Amrit Dhillon

Shreya Tripathi sleeps most of the day. At night, she lies awake. Only 18, she has been fighting tuberculosis for five years. Her voice on the telephone from her home in Patna, eastern India, is a whisper. If she speaks for more than a few minutes, she becomes breathless.

Though exhausted, Shreya is also fighting another battle – in the Delhi high court – to demand a new TB drug. Every other medication she has tried has failed to beat the disease.

Shreya has a form of TB caused by bacteria resistant to treatment even with the most powerful drugs. She wants the Indian government to give her bedaquiline, the first new TB drug to be registered in more than 50 years. Its use is tightly controlled. Only six government hospitals are allowed to administer it, and even then only as a last resort.

India has one of the highest levels of drug-resistant tuberculosis in the world. To preserve bedaquiline’s effectiveness – if the bacteria mutate to resist it, there is nothing else available – the Indian government is strict on who can have it and how they are monitored. The National Institute of Tuberculosis and Respiratory Diseases in New Delhi, one of the authorised six centres, has refused to give Shreya the drug.

Shreya was diagnosed with TB in 2012, when she was 13. Doctors in Patna started her on a TB regimen but she proved resistant to the first and second lines of treatment. She and her father, Kaushal, a civil servant, are tired of running around hospitals getting nowhere, while Shreya’s condition worsens.

Two years ago, she had to drop out of school because she was so weak. She needs a wheelchair to get around. Swimming and badminton – her favourite sports – have become distant memories.

Shreya is a category five patient, which means she needs treatment for “extreme” drug resistant tuberculosis, or XDR-TB.

The family only became aware of bedaquiline in October, after a visit to Dr Zarir Udwadia, a consultant chest physician at Hinduja hospital in Mumbai. “It gave us hope. I was desperate by then because nothing had worked for my daughter,” says Kaushal.

Udwadia knew the exact combination of drugs that Shreya needed to take with bedaquiline, which does not work on its own. However, government protocol concerning the drug prevents him, as a private doctor, from accessing it. He told the family to get the drugs from the national institute in New Delhi, but they were refused because Shreya was not a resident.

“We argued and fought with them,” says Kaushal. “They agreed to take a sputum sample from Shreya in November for a drug susceptibility test to see which drugs she is resistant to, but they already knew she was drug resistant from earlier such tests. They wasted precious time.”

They kept calling the hospital for the result. Two months later, they were told the sample had been contaminated. On 28 December, Shreya provided a fresh sample and was told to wait four to six weeks for the culture.

“It was then I told Papa to go to court. Even if it’s too late for me, at least other patients will benefit from it. Just imagine how hard it must be for really poor people to get this drug,” says Shreya.

The case has been heard in Delhi high court this week.Saket Sikri, counsel for the national institute, says that the hospital cannot prescribe the other drugs that must be administered with bedaquiline until it gets the culture report.

“A wrong combination can kill and, since this drug is her last hope, we have to get it right. We are being humane, not bureaucratic, and are following World Health Organisation guidelines,” says Sikri. “The institute cannot choose which parts of the WHO protocol to follow and which to ignore.

“I think the judge’s final decision will hinge on whether he thinks my client is following WHO’s guidance on the use of [bedaquiline]. The judge can’t decide which doctor or which line of treatment is correct but he can judge if the guidelines are being followed and, in that respect, the institute is justified in waiting for the drug susceptibility test report to come.”

However, TB experts have said the culture the institute is awaiting is unnecessary, since it is already known that Shreya is drug resistant.

Anand Grover, a senior lawyer with the Lawyers Collective, which represents Shreya, says that the government has failed to update its own protocol to reflect the latest WHO guidance on bedaquiline, under which several XDR-TB patients have been put on drug regimens similar to the one prescribed by Udwadia. “There is evidence from other countries, including South Africa, showing that this combination has been successful in treating XDR-TB,” says Grover.

Grover has told the court that the prospect of Shreya losing her life without access to bedaquiline should outweigh concerns about any possible resistance that might occur. He has also told the court that the government is following the WHO protocol dating from 2013, when there was limited data on the efficacy and safety of the new drug.

Backing Shreya’s team is testimony from Dr Jennifer F Furin, from the Department of Global Health and Social Medicine at Harvard Medical School, who said Shreya should have been started on a bedaquiline-containing regimen in October.

“Additional delays … threaten her life and the effectiveness of this agent. It is unfortunate that there have already been so many significant delays in providing [bedaquiline] to Ms Tripathi,” said Dr Furin in her written testimony.

Dr Furin has previously criticised India for its slow rollout of the drug. In her Delhi high court testimony she said that scientific publications have set a benchmark that between 30% and 45% of patients with multi-drug resistant TB in a country should be able to access bedaquiline.

“In India, this means a minimum of 30,000 persons per year, based on 2016 estimates. As of 1 December 2016, only 164 individuals had been reported … to be receiving [bedaquiline]. This slow rollout … was noted as a problem by the WHO,” said Dr Furin.

There will be a further hearing on 18 January. “I don’t think the court will give it to me,” says Shreya. “But because of Papa’s efforts, at least other patients may get it later.”

Politics and protocol leave Indian teen"s life in the balance pending TB drug ruling | Amrit Dhillon

"A few spots cast a cloud over my day": male teens on secret body worries

Although body image issues are thought to mainly affect young women, young men also worry about their looks – and more so than you might imagine. A new survey of 1,000 primary and secondary students in the UK found that 55% would consider changing their diet to look better, and 23% said they believed there was a “perfect male body”. It’s thought that pressure to look good comes from friends, celebrities, advertising and social media.

Related: Male teens and body image: what are your biggest fears and insecurities?

Below, four male teenagers and one young adult reveal their biggest body worries. Share your thoughts and comments (or indeed your own secret fears) below the line.

James, 19, Cornwall: ‘I don’t think I’ll ever be satisfied with my body’

I am most insecure about my skin and body. During my teenage years I spent hours looking in the mirror, thinking about what I hate and must improve on. I want to be more muscular, which requires eating more, but I’m also petrified of getting fat. Every bite becomes an existential matter, and I worry about being tipped over the edge into obesity (I’m 5ft8 and weigh roughly 138lbs). My skin is another root of my self-loathing. I’m constantly worried about bumps and spots and blackheads and obsess over the smallest of blemishes, washing my face sometimes more than 10 times a day. It really tears me apart.

I don’t think young men necessarily worry about their body image more than girls, but the problem is that we don’t talk about it. All my body worries really affect my mood. It sounds so dramatic but a grey cloud can be cast over my day because of a few spots.

‘I worry about making a fool of myself at the gym, so work out at home instead.’ Photograph: Linda Nylind for the Guardian

The past couple of months have been defined by diet and exercise and a will to get fit. But I also have a weird paranoia about joining a gym. I worry about making a fool of myself, so have gym equipment I use at home instead. Now, I work out pretty much every night. I’ve done hours of research on the best exercises and correct diet for muscle growth, but still don’t think I will ever be fully satisfied with the way my body looks.

William, 20, Essex: ‘Body image is a growing problem among young men’

Until my late teens I was overweight and although I am now (nominally) a normal weight for my height, I still feel fat and unattractive. I hate the way I look, whether I’m clothed or naked.

The ubiquity of internet porn has opened up a whole new world of insecurities around penis size

William

I think body image issues among young men are a growing problem. Advertising has made a big difference, for example the infamous Levi’s jeans ads that used a “perfect” male body to sell denim. Levi’s ads from the 1980s to me seem like a turning point, the first time that male sexuality and body image were used to sell us something (although practically any ad for men’s clothing or perfume now does this). These ads make me feel inadequate.

The ubiquity and extremity of internet porn has also opened up a whole new world of insecurities around penis size for men. Add that to an aggressively macho sports culture that worships strength and often denies men a chance to express their problems and you have the perfect storm for bottled-up anxiety, poor self-image and body dysphoria.

Craig, 17, Leicester: ‘Young men don’t talk about their own bodies in a negative way because they could get bullied’

I am sure a lot of men worry about their bodies, because we are expected to be muscular and some aren’t. Thinner men also think that they won’t get a date and some try to bulk up. During college years, young men always compare themselves to others and normally those who are classed as “fit” by girls.

I sometimes look at my own body and question whether it is good enough. I know I’m not as thin as I would like and I don’t have time to go to a gym (and wouldn’t because there are too many people there). I often feel embarrassed to take my top off, especially with friends because I don’t know what they will say, so I try to keep my tops a little baggy. Young men don’t talk about their own bodies in a negative way because they could get bullied, and younger men, especially, see their issues as weaknesses for others to exploit.

Mike, 19, Nottingham: ‘Young men are obsessed with body image’

I have always thought I was scrawny, that my shoulders are not broad enough and my upper arms not muscly enough. I could never go swimming or topless on a beach because I just don’t look good. I also worry that I’m not tall enough and that my skin is too pale.

Young men worry about body image every bit as much as young women do

Mike

Young men are obsessed with body image and worry about it every bit as much as young women do. Their worries can sometimes be more acute because there is so little debate about how images of “perfect” male bodies are used by the media. Whereas most girls are made aware that they are often unrealistic, there is no similar attempt to educate young men about body image. I am constantly anxious about the way I look in public: worries about being scrawny mean I can’t wear T-shirts or any close-fitting clothes. I feel uncomfortable without a jacket on to shield me, so I fear hot days when I have to leave the house without one. I also find it difficult to interact with girls without feeling like they are judging me. The way I appear feels like the most important thing in my life and one I can’t get right.

Tony, 18, Leicester: ‘My scrawny physique has led to me being called anorexic or compared to a heroin addict’

‘Comments about my body have made me insecure about ever taking my top off at the beach or poolside.’ Photograph: Noel Hendrickson/Getty Images

Everyone has always found great amusement at being able to form a ring around my wrists between their thumb and little finger. My scrawny physique has led to me being called anorexic, while others compare me to a heroin addict. All these comments have made me insecure about ever taking my top off at the beach or poolside. Worse still is that men often seem to size you up and then treat you accordingly. At times I feel like a non-entity. Everyone assumes that a two-seat sofa will fit three when I am one of the two already on it. Girls can be no different. They flock to the muscular men without ever giving boys my size a second glance. I am often told that it’s more a matter of confidence, but having a skinny physique means I don’t have any.

There seems to be a deficit of sensitivity in most male groups. It is always about banter and bravado. If one of us were to spontaneously open up there would be a tsunami of criticism and jokes.

• Some names have been changed.

"A few spots cast a cloud over my day": male teens on secret body worries

Why we shouldn"t worry about teens making use of mobile phones | Joanna Moorhead

‘I wonder regardless of whether there may be a few shocks in store for men and women who consider mobile phone technological innovation spells doom for today’s youngsters. It seems to me that the opposite might be the case.’ Photograph: Getty Images

Like most twelve-yr-olds, my daughter received her 1st mobile phone a number of months ago – just as she started out secondary school. Yr seven is the time when existence really opens up for younger men and women: suddenly they are travelling solo to college and going out on their own, meeting up with pals to go buying or to the park or to the cinema. It manufactured sense to me as a mother or father, as it does to most mothers and fathers with youngsters of this age group, to get her a telephone.

Do I be concerned about her connection with her cellphone, not just now but on into the adolescent many years that are nearly upon her? Yes, I do – and so do many other parents. So I welcome today’s information that Imperial University is launching a examine into the use of mobiles, focusing on two,500 year seven college students who will be assessed now and again in two years’ time. The research is not seeking at well being risks around the use of mobile phones – of brain tumours and so on – although these will continue to be monitored in the years and decades ahead. Rather, it really is hunting at cognitive issues connected with the use of mobiles: such as how the use of phones may affect children’s memory or interest span.

I seem forward enormously to what the study reveals, but I wonder whether or not there may be a few shocks in shop for individuals who feel mobile phone technologies spells doom for today’s youngsters, eating up their brain cells with mindless chit-chat and pointless online video games. It appears to me that the opposite may be the case: my older daughter, who is 15 and uber-linked (even for a 15-year-previous), looks to me to have honed her rapid-wittedness hand in glove with her mobile mobile phone. Multitasking? Fast contemplating? Dilemma solving? Information gathering? My daughter utilizes her smartphone for all this and much more and I consider you’d agree that all the above are helpful, existence-enhancing attributes for a teenager.

Another massive advantage mobile phones offer youthful men and women is independence, some thing that they crave and that parents want for them. My 12-12 months-previous can do all kinds of duties by herself that I, aged twelve, would have relied on my mother and father to do: she can find out cinema occasions, supply garments she would like in retailers, check what time the vet opens so we can get the rabbit’s claws clipped. Her globe has opened up thanks to her mobile mobile phone, in an fully positive way, and it will undoubtedly have knock-on effects for her development.

So what are my worries about mobiles? Effectively, considerably much more than both brain tumours or arrested cognitive growth, I’m concerned about addiction. I truthfully cannot don’t forget the final time I noticed my 15-yr-outdated without having her smartphone, other than possibly when she was in the swimming pool on holiday final summer time (and even then, it was positioned close by on a sunbed). Teenagers can appear obsessed with their mobile: checking them every single couple of minutes, texting individuals all the time, checking to see how a lot of “likes” they’ve got following they’ve posted on social media, refusing to place their phones to 1 side when they are sitting round the table for Sunday lunch …

Then once more, that reminds me of some other individuals I know – me and my husband. We’re fairly wedded to our phones as well. Challenge us about it (our youngsters certainly do) and we’ll cheerfully reassure you that it’s all to do with function, that we’re just monitoring some information story, or that we’re waiting for an essential call. Sadly, however, I have to admit that the cause I check my telephone also frequently is almost certainly for the same motives my daughters do the same with theirs: boredom and insecurity. Youngsters, of course, have these issues by the bucketload, and I sometimes think mobiles have made adolescents of us all.

So in many techniques I suspect that, no matter what the Imperial University survey discovers, the individuals we should be seeking most closely at is not our youngsters, it really is ourselves. After all, we’re grappling with the newness and the unknowns of mobile cellphone technologies just as our children are, and the items they’re receiving incorrect may possibly be the factors we’re not function-modelling very well for them. Time, and this review, will hopefully tell us far more.

Why we shouldn"t worry about teens making use of mobile phones | Joanna Moorhead

Can Smartphones Adversely Influence Cognitive Improvement In Teens?

The debate more than regardless of whether the use of mobile technology discovered in smartphones has an impact on brain improvement in youngsters and teens has been an ongoing concern of parents and educators. With the widespread use of this technology, the query stays no matter whether the use of such phones can lead to prolonged phrase cognitive effects that influence language improvement abilities, memory capability and sustaining focus on duties at hand.

Researchers will study 2,500 seventh graders in 160 colleges during London.This examine, in excess of a time period of 3 many years, will signify the largest investigation to date evaluating any potential connection of mobile or smartphone mobile phone use on the establishing brains of teens.

The investigators, from the Imperial College in London, hope to find any prospective website link to phones use and adverse effects on cognitive skills in building teens. The examine will be referred to as the Review of Cognition, Adolescents and Mobile Phones (SCAMP).

English: An picture of the HTC Trophy (Photograph credit: Wikipedia)

Measures to evaluate memory, response time, and spatial awareness will aid to assess cognitive function each throughout and after the review time period.  Twenty percent of participants in the study will also be outfitted with specialized meters to much more closely assess results of electromagnetic radiation over the examine period.

The investigation is part of the Investigation Initiative on Health and Mobile Telecommunications (RIHMT), funded by the mobile telephone firms as properly as the Division of Health.

Present data in the United kingdom reveals that virtually 70 % of 11-twelve year olds use a mobile phone. This increases to shut to 90 percent by the age of 14.

As a result far, concern that electromagnetic radiation emitted by mobile phones improve the frequency of brain cancer in grownups as nicely as children has not been shown to be real. But no matter whether the use of this kind of technological innovation in smartphones can adversely effect cognitive growth in teen brains also stays an essential unanswered query.

It has been suggested that the establishing brain and central system may in reality be far more vulnerable to radio frequency exposures. The temporal and frontal lobes are closest to the ear the place teens hold their phones, unless they are using an earpiece. In reality, research has proven that each the temporal and frontal are actively establishing throughout adolescence and are instrumental in elements of superior cognitive functioning.

Interestingly, despite the fact that there is no concrete evidence that mobile or smartphone engineering is linked to adverse outcomes, wellness officials in the United kingdom at present recommend that teenagers underneath the age of 16 only use mobile phones only for emergency or vital requirements. Texting or use of an earpiece is advised along with keeping all calls to a minimum.

Available published scientific proof thus far has not linked radiation publicity from use of mobile or smart phones to growth of brain cancer in adults above quick adhere to up intervals. However, data evaluating hefty use in excess of a longer time period of follow up is lacking, with results on kids and teens unclear at this point in time.

Another ongoing study in the United kingdom, The COSMOS research, has been monitoring practically 290,000 adult mobile phone users for the previous thirty years to evaluate any long term overall health consequences.

In addition, there are only two ongoing trials evaluating the result of mobile phone use on growth of cancer in children. Therefore far, one particular research has uncovered no hyperlink to cancer, and the other review is in progress.

Hopefully this study will produce tangible evidence to guide dad and mom and teens about regardless of whether smartphones adversely influence cognitive development during early teenage years. Whilst adults continue to use mobile devices everyday for nearly each and every conceivable function, we require clear data to assess how mobile technologies influences teens who are establishing. This may possibly then allow us to make educated choices about when to introduce these gadgets for normal use in developing kids and teens.

Can Smartphones Adversely Influence Cognitive Improvement In Teens?

Sophie Jones"s death is tragic but smear tests for teens are not the answer | Rhiannon Lucy Cosslett

‘A 2009 research published in the BMJ located no proof that screening ladies aged 20-24 diminished the incidence of cervical cancer at age 25-29.’ Photograph: Alamy

The household of a young lady who was denied a smear test and tragically died of cervical cancer are campaigning to reduced the cervical screening age to 16 (it is currently 25 in England). At the last count the petition had far more than 130,000 signatures.

Sophie Jones was 19 and died completely unnecessarily. She had been suffering from serious stomach pains for months and, on going to the medical professional, had asked for a smear test but been refused simply because of her age. Cervical cancer was diagnosed in November and she died on Saturday. A smear check could have saved her existence. Nonetheless, lowering the cervical screening age to sixteen is a horrible idea and I urge you not to indicator the petition.

Every single now and once more, a young lady dies from cervical cancer and as a result campaigners will get in touch with on the government to lower the age at which cervical screening commences. Their anger that the cancer of their loved 1 went undiagnosed is totally understandable, specifically when, as in Sophie’s case, the patient has presented with signs and symptoms which could indicate cervical cancer. Sophie’s signs meant she ought to have been granted a smear check, but that isn’t going to indicate that all the other women her age should be. Smear exams are not, we overlook, strictly tests at all. Their function is not to diagnose cervical cancer but to try out and avert cancer from creating. This danger is gleaned from cell modifications on the cervix. If you are below the age of 25, the modifications are so great that testing gets to be relatively pointless. 1 in three ladies below the age of 25 will have an abnormal outcome (in contrast to one particular in 14 for ladies in excess of 25). It has been located once more and once more that 25 is the tipping stage at which the advantages of cervical screening outweigh the hazards. This is why the age need to not be lowered – the variety of false positives could lead to numerous younger females currently being referred for agonizing treatment method unnecessarily.

I had an abnormal smear when I was less than 1 month past my 25th birthday, and I can testify that the therapy is painful. With out wanting to go into also considerably detail, think about becoming scraped out with an electrically charged spoon. The radio was taking part in even though they did it. If I did not detest Coldplay then, I surely do now.

Certainly when I received the letter I imagined I had cancer. I did not realise that most cell alterations are standard and that possessing a pesky fluctuating cervix does not imply that you are going to die. Even though I am glad I had a smear check, I am mindful that had I taken it a month earlier, in all probability they would have sent me away. It was not a pleasant knowledge and it did, to an extent, traumatise me. It’s certainly not one thing I would wish unnecessarily on a teenage woman.

The a lot more you commence talking about your abnormal smear, the more you hear the phrases “yeah, me also”. I have lost count of the quantity of ladies who have informed me their stories. Most didn’t have cancer and didn’t even need to have treatment. Lowering the age would indicate a lot of a lot more “me toos”.

There is a school of thought which argues that females shouldn’t have smear exams at all. I do not subscribe to that but studies have shown that the bulk do not have any benefit. The likelihood of getting an abnormal end result is significantly greater than the probability that you’ll get cancer, but for the small proportion of women who do go on to produce cancer, a smear is vital.

Thus far, health-related proof does not recommend a need to lower the age for cervical screening. A 2009 examine published in the BMJ identified no proof that screening girls aged twenty-24 lowered the incidence of cervical cancer at age 25-29. In other words, cervical screening at this age has small or no affect on charges of invasive cancer up to the age of 30.

It’s straightforward to get swept up in the emotion of a campaign this kind of as that of Sophie’s family members – her death was preventable and her physician failed her. But, as with numerous factors, education and bettering entry holds the important. Females need to have to be taught not to panic so a lot when they get an abnormal end result and to recognise signs and symptoms – it is a scandal that we are this unwell-informed about our very own bodies. Physicians need to be reminded how to react when young individuals present indications of the illness, and we need to be producing sure that teenagers are receiving all three HPV jabs, particularly people from non-white ethnic groups. Creating sure these measures are taken would be a fitting tribute to Sophie.

Sophie Jones"s death is tragic but smear tests for teens are not the answer | Rhiannon Lucy Cosslett