Fact Check: Trump Officials Say Drug Prices Are Inflated. So Are Some of Their Claims on a Solution.

The administration has sometimes made misleading statements to garner support for its plan on what it has accurately identified as a problem for many Americans.

WASHINGTON — In his zeal to fulfill a campaign promise, President Trump has correctly identified high drug prices as a major problem for many Americans. But in defending his proposed solutions, he has sometimes stretched the facts.

Mr. Trump has proposed that Medicare pay for certain prescription drugs based on the prices paid in other developed countries. He called this “a revolutionary change” and said it would save money for the government and for Medicare beneficiaries without hurting their ability to get the medicines they need.

As part of a demonstration project covering half the country, Medicare would establish an “international pricing index” and use it to calculate a “target price” for each drug covered by Part B of Medicare. The proposal is expected to produce “a 30 percent reduction in Medicare spending” for drugs included in the test, the Department of Health and Human Services said.

The new pricing model, unveiled less than two months ago, has encountered a torrent of criticism from drug companies, which benefit from high prices under the current system, and from conservative groups, which accuse Mr. Trump of trying to import price controls from foreign countries.

Part B of Medicare spends roughly $30 billion a year for drugs that patients receive in doctor’s offices and outpatient hospital clinics — often by infusion or injection — for cancer, rheumatoid arthritis, macular degeneration and other conditions. Some of the drugs cost more than $100,000 a year. Many are biologic drugs made from living cells.

Mr. Trump is right that brand-name drugs often cost much more in this country than in Europe. But it is a stretch to say that drug companies voluntarily provide discounts abroad. They generally charge lower prices to ensure that their products will be covered by national health systems in other countries.

Medicare does not use its leverage in that way. As a candidate, Mr. Trump said Medicare should directly negotiate prices with drug makers, a proposal long favored by Democrats. But since taking office, he has dropped the idea.

Most of the 36 countries in the Organization for Economic Cooperation and Development “regulate pharmaceutical prices directly or indirectly through coverage determinations,” the group said in a report last month.

Daniel Hartung, an associate professor at the Oregon State University College of Pharmacy, explained: “Many O.E.C.D. countries have single-payer systems in which the government is essentially setting prices and telling companies what it will pay for coverage. That’s how they can extract substantial reductions relative to prices paid in the United States.”

Mr. Trump is proposing to use prices in 14 other countries as a benchmark or guide in deciding what Medicare would pay. The administration acknowledged that some of these countries, like the Czech Republic and Greece, “have far lower per capita incomes than the United States.”

Several of the 14 countries have a budget for spending on prescription drugs. Many peg their payments to drug prices in other countries, a practice known as reference pricing or international benchmarking. Some of the countries assess the “cost-effectiveness” of drugs and limit how much they will pay for expected gains in the length and quality of life, with some exceptions allowed.

Just seven months ago, the Trump administration criticized the use of reference pricing by other countries, but it has now proposed something similar for Medicare.

“The president is also going to bring smart negotiation to billions of dollars’ worth of drugs in a part of Medicare where there is currently no negotiation at all.”

“In Medicare Part B today, the government gets the bill, and we just blindly pay it — oh, plus a 6 percent markup for the provider who administers it. There is no negotiation.”

It is true that the government does not negotiate with drug manufacturers to determine the prices paid for drugs in Part B of Medicare. But the prices paid for many of those drugs do reflect the results of competition and negotiations in the private sector.

Under the Medicare Modernization Act of 2003, the government’s payment for a Part B drug is based on the drug’s “average sales price.” This price, as defined in the law, accounts for commercial discounts, rebates and other price concessions that drug manufacturers negotiate with health insurance plans, pharmacy benefit managers and other private purchasers.

These price concessions, generally treated as trade secrets, may knock 15 to 35 percent off the list price of a drug.

The problem for Medicare and for consumers is that, for some drugs, manufacturers do not give substantial discounts. This may be the case, for example, if a drug has no direct competitors, so doctors cannot prescribe an alternative, or if the market for a drug outside Medicare is small.

“For at least 30 percent of Part B spending, Medicare prices are at least half of the market, meaning there is effectively no competition within that substantial federal spending among competing products,” said John O’Brien, the senior adviser on drug pricing at the Department of Health and Human Services.

“This model will expand patient access, through lower prices. This is a pro-patient-access model. We are going to lower drug prices substantially, for our most costly drugs, without restrictions on patient access.”

Under Mr. Trump’s proposal, Medicare payment for physician-administered drugs would be based, in part, on prices in other countries, including some that restrict access to drugs by limiting coverage.

The administration assumes that Medicare can pay lower prices without limiting access. This assumption is based on a belief that drug manufacturers could not walk away from the Medicare market because it is so large, with 55 million people in Part B.

Moreover, Medicare officials say they would monitor the use of prescription drugs to ensure that beneficiaries’ access to medicines is not compromised. Even with the pricing index, they say, Medicare would still be paying more than the average of other countries.

“We share the administration’s goal of reducing prescription drug costs,” said Christopher W. Hansen, the president of the advocacy arm of the American Cancer Society, but the proposal “raises numerous questions about beneficiary access.”

“For instance,” Mr. Hansen said, “how would patients access necessary care if there are no vendors willing to bring drugs to physicians in their area? What if the drug maker decides not to sell a particular drug at the price required under the proposal, and patients are unable to get the Medicare-covered drugs they need to treat their disease?”

Dr. Debra Patt, a breast cancer specialist at Texas Oncology, a group of more than 400 doctors, asked: “What leverage would a vendor have to bring manufacturers to the table? Suppose a manufacturer is selling drug X for $1,000, and the vendor wants to pay only $750. What if the manufacturer says no? What then happens to Medicare beneficiaries?”


December 16, 2018

Sources: New York Times

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  • A.I. Shows Promise as a Physician Assistant

    A.I. Shows Promise as a Physician Assistant

    has tested a potential remedy for all-too-human frailties: artificial intelligence.</p><p>The system was highly accurate, the researchers said, and one day may assist doctors in diagnosing complex or rare conditions.</p><p>Drawing on the records of nearly 600,000 Chinese patients who had visited a pediatric hospital over an 18-month period, the vast collection of data used to train this new system highlights an advantage for China in the worldwide race toward artificial intelligence.</p><p>Because its population is so large — and because its privacy norms put fewer restrictions on the sharing of digital data — it may be easier for Chinese companies and researchers to build and train the “deep learning” systems that are rapidly changing the trajectory of health care.</p><p>Pooling health care data is a particularly difficult endeavor. Whereas researchers went to a single Chinese hospital for all the data they needed to develop their artificial-intelligence system, gathering such data from American facilities is rarely so straightforward.</p><p>“You have go to multiple places,” said Dr. George Shih, associate professor of clinical radiology at Weill Cornell Medical Center and co-founder of MD.ai, a company that helps researchers label data for A.I. services. “The equipment is never the same. You have to make sure the data is anonymized. Even if you get permission, it is a massive amount of work.”</p><p>Similar technologies are being built to automatically detect signs of illness and disease in X-rays, M.R.I.s and eye scans.</p><p>Using the technology, Dr. Kang Zhang, chief of ophthalmic genetics at the University of California, San Diego, has built systems that can analyze eye scans for hemorrhages, lesions and other signs of diabetic blindness. Ideally, such systems would serve as a first line of defense, screening patients and pinpointing those who need further attention.</p><p>Now Dr. Zhang and his colleagues have created a system that can diagnose an even wider range of conditions by recognizing patterns in text, not just in medical images. This may augment what doctors can do on their own, he said.</p><p>“In some situations, physicians cannot consider all the possibilities,” he said. “This system can spot-check and make sure the physician didn’t miss anything.”</p><p>The experimental system analyzed the electronic medical records of nearly 600,000 patients at the Guangzhou Women and Children’s Medical Center in southern China, learning to associate common medical conditions with specific patient information gathered by doctors, nurses and other technicians.</p><p>First, a group of trained physicians annotated the hospital records, adding labels that identified information related to certain medical conditions. The system then analyzed the labeled data.</p><p>Then the neural network was given new information, including a patient’s symptoms as determined during a physical examination. Soon it was able to make connections on its own between written records and observed symptoms.</p><p>When tested on unlabeled data, the software could rival the performance of experienced physicians. It was more than 90 percent accurate at diagnosing asthma; the accuracy of physicians in the study ranged from 80 to 94 percent.</p><p>In diagnosing gastrointestinal disease, the system was 87 percent accurate, compared with the physicians’ accuracy of 82 to 90 percent.</p><p>Able to recognize patterns in data that humans could never identify on their own, neural networks can be enormously powerful in the right situation. But even experts have difficulty understanding why such networks make particular decisions and how they teach themselves.</p><p>As a result, extensive testing is needed to reassure both doctors and patients that these systems are reliable.</p><p>Experts said extensive clinical trials are now needed for Dr. Zhang’s system, given the difficulty of interpreting decisions made by neural networks.</p><p>“Medicine is a slow-moving field,” said Ben Shickel, a researcher at the University of Florida who specializes in the use of deep learning for health care. “No one is just going to deploy one of these techniques without rigorous testing that shows exactly what is going on.”</p><p>It could be years before deep-learning systems are deployed in emergency rooms and clinics. But some are closer to real-world use: Google is now running clinical trials of its eye-scan system at two hospitals in southern India.</p><p>Deep-learning diagnostic tools are more likely to flourish in countries outside the United States, Dr. Zhang said. Automated screening systems may be particularly useful in places where doctors are scarce, including in India and China.</p><p>The system built by Dr. Zhang and his colleagues benefited from the large scale of the data set gathered from the hospital in Guangzhou. Similar data sets from American hospitals are typically smaller, both because the average hospital is smaller and because regulations make it difficult to pool data from multiple facilities.</p><p>Dr. Zhang said he and his colleagues were careful to protect patients’ privacy in the new study. But he acknowledged that researchers in China may have an advantage when it comes to collecting and analyzing this kind of data.</p><p>“The sheer size of the population — the sheer size of the data — is a big difference,” he said.</p>

    1 February 12, 2019
  • Basics: Everywhere in the Animal Kingdom, Followers of the Milky Way

    Basics: Everywhere in the Animal Kingdom, Followers of the Milky Way

    sitional variations, they are redefining what used to be a signature characteristic of mammals. </p><p>“It’s the equivalent of giving birth to an 18-year-old,” said Geoffrey Attardo, an entomologist who studies tsetse flies at the University of California, Davis.</p><p>The newborn tsetse fly looks like a hand grenade and moves like a Slinky, and if you squeeze it too hard the source of its plumpness becomes clear — or rather a telltale white. The larva, it seems, is just a big bag of milk. </p><p>“Rupture the gut,” Dr. Attardo said, “and the milk comes spilling out.” </p><p>And milk it truly is — a nutritional, biochemical and immunological designer fluid that the mother fly’s body has spun from her blood meals and pumped into her uterus, where her developing young greedily gulped it down. </p><p>Thus fattened on maternal largess, a tsetse fly larva can safely burrow underground and pupate for 30 days before emerging as a full-blown adult with a nasty bite and a notorious capacity to transmit a deadly disease called sleeping sickness.</p><p>Still other scientists are seeking to tally and understand the compositional differences in the milks from a broad sample of the world’s 5,500 or so mammals. They have unearthed a number of compelling concordances between the demands of oddball mammals and the makeup of their milk.</p><p>Assaying the milk of the nine-banded armadillo, for example, Michael Power, a lactation researcher at the Smithsonian National Zoological Park in Washington, and his colleagues were impressed by the high levels of calcium and phosphorus they detected, and by the even greater concentrations of protein. </p><p>“The protein was through the roof, way above anything else in the milk,” said Dr. Power, co-author with Jay Schulkin of “Milk: The Biology of Lactation.” </p><p>The elevated mineral counts made sense. “What does an armadillo build? A bony shell,” Dr. Power said. “So there’s going to be a lot of calcium and phosphorus going into this baby.” </p><p>But why all the protein? The researchers soon realized it was a matter of chemistry. If you simply dropped large quantities of calcium and phosphorus into most types of mammalian milk, the minerals would glom together into insoluble phosphate compounds. </p><p>“They’d get stuck in the mammary gland and never reach the baby,” Dr. Power said. The solution? Throw in extra doses of casein proteins to bind the minerals into compact, usable nano-clusters. </p><p>“If I’m going to have a high-calcium, high-phosphorus milk, I have to have a high-protein milk,” Dr. Power said, “because a lot of that protein is a calcium-phosphorus delivery device.”</p><p>There was only one way the water isotopes could have ended up in mother’s milk. “She’s lactating in a den,” Dr. Oftedal said. “She’s not eating or drinking. But she is consuming all the excreta of her young, which she then puts back in her milk.” </p><p>Small wonder, then, that the amount of milk the denning mother produced exceeded the weight she lost. “She’s recycling everything,” Dr. Oftedal said.</p><p>Biologists warn against the wanton use of the word milk — sorry, almond “milk” really isn’t — and some mammalogists would like to restrict the term to the secretions of a dedicated mammary gland, which only their study subjects happen to possess. </p><p>But many scientists concur that if a parent synthesizes or highly modifies a substance on which its offspring’s life then depends, that parent is making a milk. By this measure, predigested food alone may not count, but if the parent first adds essential ingredients to the bolus, the regurgitate can fairly be deemed a milk. </p><p>“It’s like kiss-feeding,” Dr. Steiger said. “It looks really nice.” But as the researchers demonstrated, there is more to the osculatory exchange than pulped meat: the parent’s oral fluids are also critical to the young beetle’s survival. </p><p>The researchers have yet to analyze this chocolate-colored beetle milk, but Dr. Steiger suspects that it supplies the larvae with gut microorganisms, antibodies, digestive enzymes and other must-haves for mulching cadavers.</p><p>Wherever it appears, lactation is expensive and demands evolutionary justification. Flamingos are among the few birds that make milk for their young, and the effort drains them of all color — but at least it’s an egalitarian affair. </p><p>A male and female will jointly build a nest, incubate a single large egg and, when the egg hatches, churn out the rich crop milk on which the flamingo chick will feed for nine very long months. Begging calls from the chick stimulate in the parent’s brain the release of prolactin — the same hormone that subserves human lactation — which in turn prompts cells lining the crop, at the base of the parental throat, to swell and secrete the magic formula. </p><p>Brimming with protein and fattier than mammalian milk, flamingo milk “has the consistency of cottage cheese,” said Paul Rose, a flamingo researcher at the University of Exeter in Britain.</p><p>It is also bright pink. The parents spike the milk with the same carotenoid pigments that normally tint a flamingo’s feathers and that happen to be antioxidants — ideal for promoting a chick’s health and rapid growth. </p><p>Weeks and months pass. The parents must steadily step up milk production to meet ballooning demand. By the time the young flamingo is close to full-grown, robust in body and blushing of tone, its parents look thin and depleted, and their once-fuchsia feathers are now winter white. </p><p>“All of their energy, all their pink pigment, has gone into the crop milk,” Dr. Rose said. “Raising a flamingo is a very hard job.”</p><p>What explains the need for such full-throated lactation? Why can’t flamingos simply feed their young on beetles and flies, the way many birds do? Dr. Rose attributes the practice to the flamingo’s exceptional foraging style and the mouthparts necessary to accommodate it. </p><p>Like baleen whales, flamingos are filter feeders, and their distinctively crooked bills act as elaborate sieves. It takes time for a flamingo chick’s straight bill to thicken and bend, and longer still to master the practice of panning for a meal.</p><p>Only in the class Mammalia do all member species nurse their young, yet evolutionary biologists now believe that the roots of mammalian lactation date back more than 300 million years, a good 100 million years before the first mammals appeared. </p><p>The ancestors of modern mammals are thought to have laid the sort of porous, parchment-shelled eggs seen today among lizards, snakes and a couple of weird, monotreme mammals like the platypus. In contrast to the hard-shelled calcified eggs of birds, parchment eggs are at chronic risk of drying out, which means modern snakes and lizards often are constrained by the need to lay their eggs in a relatively damp setting. </p><p>Our ancient forebears stumbled on a liberating solution: Make yourself into a watering can, and you can lay your eggs wherever you want. </p><p>“The likely first function of milk was to hydrate parchment-shelled eggs laid on dry ground,” said Amy Skibiel of the University of Idaho, an expert in mammalian lactation. By this scenario, pre-mammals dribbled fluid onto their eggs through pores on their chest; nipples came much later. </p><p>Hooded seal pups nurse on rapidly shrinking ice floes for just four days, and during that time they manage to double their weight. Not surprisingly, hooded seal milk is more than 60 percent fat — the fattiest milk among mammals. </p><p>It also smells overwhelmingly of fish, as I discovered when I sniff-tested a series of exotic milks at the National Zoo’s world-class milk bank. On the other end of the lipid scale, rhinoceros milk, at 2 percent fat, looks and smells like skim milk. </p><p>Elephant milk is less watery, and I was sure I caught notes of ice cream. Lion’s milk has no discernible odor and, like most carnivore milk, is low in sugars; meat eaters are designed to efficiently wrest their glucose from protein and fat. </p><p>Human milk, by contrast, is extremely sweet. Dr. Skibiel, who tasted her own milk while nursing her baby, said it reminded her of cantaloupe.</p><p>The number and variety of sugars in human milk outstrips that seen in any other great ape, Dr. Power said, and he proposes a surprising reason for that bounty: not to build our big brain, as some have argued, but because we needed sugar’s antimicrobial powers to help us cope with all the novel pathogens we encountered after the agricultural revolution, when we started crowding into villages and living in close quarters with other animals.</p><p>“Our ability to use animals in lots of different ways is one of the reasons we’re successful,” he said, “but it was a huge shock to the system.” Luckily, our milk rose to the challenge. </p><p>“Our brain made our milk,” Dr. Power said, “not the other way around.”</p>

    1 February 12, 2019
	Miracle treatment or dangerous drug? Indonesian growers cash in on Kratom as it takes hold in the US

    Miracle treatment or dangerous drug? Indonesian growers cash in on Kratom as it takes hold in the US

    e the unlikely ground zero for the global production and export of Kratom, a tree leaf hailed by some as a miracle cure for everything from opioid addiction to anxiety.</p><p>Part of the coffee family, the leaf has been used for centuries in Southeast Asia and Papua New Guinea for its pain-relieving and mildly stimulating effects but it is now sold in powder form and exported worldwide - alarming some health regulators who have raised concerns about safety.</p><p>Kratom stimulates the same brain receptors as morphine, although it produces much milder effects.</p><p>'I take Kratom and have had no problems. Every strain has its benefits - some help you relax, others can treat insomnia or treat drug addiction. Some help increase stamina,' grower Faisal Perdana told AFP.</p><p>Kratom is already banned for domestic consumption though it allows its export in unprocessed form</p><p>Fellow farmer Gusti Prabu, who now exports 10 tonnes of the drug a month, agreed.</p><p>'Our ancestors used Kratom and there were no negative side effects. It can help eliminate drug addiction and help people detox,' he explained.</p><p>But its popularity is causing concern - the drug is unregulated, and has had little clinical testing to assess its safety or side effects.</p><p>Kratom is already banned for domestic consumption in Indonesia, Malaysia and Thailand, though the former allows its export in unprocessed form.</p><p>Health authorities in the United States - now the drug's top importer - have linked consumption of the plant and its derivatives to dozens of deaths, warning it could aggravate a deadly opioid epidemic gripping parts of the country.</p><p>Compounds found in Kratom are opioids, which expose users to the same risks of addiction and death as illicit opiates, according to the US Food and Drug Administration.</p><p>But for farmers in Kapuas Hulu, West Kalimantan - the center of production - demand for Kratom is such that they have moved away from traditional commodities such as rubber and palm oil to start growing the tree, turning it into a major cash crop.</p><p>And at the main post office in Pontianak, the key trading post for this part of Indonesian Borneo, it's clear the health warnings have done little to dampen interest.</p><p>'Around 90 percent of our shipments from West Kalimantan province are Kratom that's been sold to the United States,' post office head Zaenal Hamid said.</p><p>As many as five million Americans use the drug and that number is growing, according to the American Kratom Association.</p><p>Data from 2016 showed that the region was shipping some 400 tonnes abroad every month - worth about $130 million annually at current global prices of some $30 a kilogramme.</p><p>Most Kratom customers are reached through online platforms such as Facebook, Instagram and Chinese e-marketplace Alibaba.</p><p>The trend for alternative medicine has been credited with increasing interest in Kratom from Europe and America, where it is usually consumed as a tea or in capsules.</p><p>The US is struggling with an opioid epidemic, fueled by addiction to prescription painkillers as well as street drugs like heroin and synthetic versions such as fentanyl.</p><p>Kratom is legal in 43 states, but the FDA is pushing for greater restrictions and has already put an import alert on it, which means shipments entering the US can be confiscated.</p><p>In a statement, the organisation warned consumers not to use the drug and said it was 'concerned that Kratom appears to have properties that expose users to the risks of addiction, abuse, and dependence.'</p><p>Scientists say that while Kratom may have positive attributes, very little research has been done into the drug.</p><p>As many as five million Americans use kratom and that number is growing, according to the American Kratom Association</p><p>'It has great potential as a remedy for pain and opioid addiction given its pharmacology and its potential accessibility,' Michael White, head of the department of pharmacy practice at the University of Connecticut, told AFP.</p><p>Advocates insist it's a safe alternative to prescription drugs and can actually help opioid addicts.</p><p>'Of the 44 deaths on record involving Kratom, they all involve poly-drug use,' said Ryan Leung, a spokesman from kratom lobby group Botanical Education Alliance (BEA).</p><p>'The FDA health warnings...(have) proven to be misguided by multiple experts,' he added.</p><p>For now, Indonesian producers are waiting to see how the regulatory battle in the US unfolds.</p><p>And while bad weather and a salmonella scare dented exports in 2017, provisional data showed Kratom shipments bounced back strongly last year.</p><p>Kratom farmer Prabu insisted: 'The Kratom market has been very good over the past decade and it still has potential in the years ahead.'</p><p>He added: 'People will see its usefulness, sooner or later.'</p><p> The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline. </p><p>Do you want to automatically post your MailOnline comments to your Facebook Timeline?</p><p>Your comment will be posted to MailOnline as usual.</p><p>Do you want to automatically post your MailOnline comments to your Facebook Timeline?</p><p> We will automatically post your comment and a link to the news story to your Facebook timeline at the same time it is posted on MailOnline. To do this we will link your MailOnline account with your Facebook account. We’ll ask you to confirm this for your first post to Facebook.</p><p>Part of the Daily Mail, The Mail on Sunday &amp; Metro Media Group</p>

    1 February 09, 2019
	First US attempt to cure a rare disease with genome editing fails miserably 

    First US attempt to cure a rare disease with genome editing fails miserably 

    a rare disease in the US has returned disappointing results, researchers at Sangamo Therapeutics announced today.</p><p>Gene-editing has been hailed as the best hope to treat inherited disorders. </p><p>Sangamo's trial used proteins that bind to targeted segments of DNA to deliver gene therapy to three patients with a rare genetic disorder that disrupts their ability to process certain sugars, causing damaging build-up in the brain, bones and more. </p><p>But a year and nine months after the trial's start, the patients' levels of harmful sugars have stayed effectively the same, casting a disappointing shadow of doubt over the prospects for 'fixing' the genome. </p><p>Brian Madeux (center, file image) was among the first people to have his genome edited as part of the first US human trial to  attempt to cure two genetic diseases. His genes were successfully edited, but the treatment has so far done little to change markers of the disease, according to preliminary findings of Sangamo Therapeutics trials released today </p><p>More than 6,000 deadly or debilitating diseases lurk in the genetic code. </p><p>Until very recently, all that could be done for people with these diseases was to treat their symptoms - there was no way to cure or reverse these conditions. </p><p>But the theory - and the hope - is that if we can alter the genes that carry these diseases, we could edit mutations out of existence. </p><p>One of the earliest, most promising methods for doing so uses so-called zinc finger nucleases (also referred to as simply zinc fingers, or ZFNs). </p><p>Zinc fingers are a fuse of two compounds that can be engineered to seek out and cut specific segments of DNA. </p><p>The latest advancements for gene-editing use the Nobel Prize-winning CRISPR technology, but the method is too new for human trials.  </p><p>Scientists at Sangamo used these to target genes that code for two related disorders, mucopolysaccharidosis types I and II (MPS I and MPS II). </p><p>MPS I causes Hurler syndrome, a deficiency of an enzyme that, in healthy people, breaks down complex sugar chains called glycosaminoglycans (GAGs). </p><p>In those with Hurler syndrome, GAGs instead build up in the body, becoming toxic and causing symptoms like claw hands, deafness, heart problems, joint and spine abnormalities and worsening mental decline.  </p><p>These children typically have coarse features, enlarged livers and spleens and may have heart and breathing abnormalities. </p><p>MPS II defects cause similar though slightly milder symptoms. Both conditions are more common among boys and affect one in 100,000 to 150,000 births. </p><p>Children with Hurler syndrome, such as this girl pictured in Sangamo's presentation of their findings, tend to have coarse features and as harmful sugar chains build up in their bodies, the compounds become toxic, damaging organs and the brain</p><p>The two diseases are cousins of the rarer, more devastating Sanfilippo syndrome, known as 'childhood Alzheimer's.' </p><p>The best treatment for this family of diseases is enzyme replacement therapy, which can slow declines but is by no means a cure. </p><p>Between its trials for MPS I and II, Sangamo enrolled nine patients who received replacement genes. </p><p>In the technical sense, the experiment worked. The scientists saw that the gene replacement worked and caused minimal side effects. The patients' bodies did begin producing more of the missing enzyme. </p><p>At least two study participants, including Brian Madeux, had their genes successfully changed. </p><p>In earlier reported preliminary results, the study participants' enzyme levels were seeing encouraging increases, and tests of their urine revealed falling levels of GAGs - the most important measure of their diseases. </p><p>In today's results, the patients' GAG levels 'did not show a meaningful change,' and some even increased, said Sangamo CEO, Dr Sandy Macrae on a conference call. </p><p>The replacement DNA 'was permanently integrated into the genome,' a significant step forward, 'but our mission is more  leading the way scientifically,' he added. </p><p>'We are realistic about whether this first generation [treatment] is going to accomplish everything that these patients need it to.' </p><p>One patient struggled during the trial, and it was recommended that they return to the standard enzyme treatment (which most continued to receive though a few withdrew from it and a couple of others are considering doing the same). </p><p>The Sangamo scientists believe that, at higher doses, the therapy may still work, but today's results are inevitably a blow to the hopes of sufferers of rare diseases for whom gene-editing has been an almost singular beacon.   </p><p> The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline. </p><p>Do you want to automatically post your MailOnline comments to your Facebook Timeline?</p><p>Your comment will be posted to MailOnline as usual.</p><p>Do you want to automatically post your MailOnline comments to your Facebook Timeline?</p><p> We will automatically post your comment and a link to the news story to your Facebook timeline at the same time it is posted on MailOnline. To do this we will link your MailOnline account with your Facebook account. We’ll ask you to confirm this for your first post to Facebook.</p><p>Part of the Daily Mail, The Mail on Sunday &amp; Metro Media Group</p>

    1 February 08, 2019
	Woman, 32, releases graphic photo diary showing 'red raw' skin after ditching eczema steroid creams

    Woman, 32, releases graphic photo diary showing 'red raw' skin after ditching eczema steroid creams

    w' skin in withdrawal after ditching the steroid creams she had been using to treat eczema.</p><p>Larissa Carey, 32, of Portsmouth, Hampshire, had been using the strong medication religiously since her diagnosis at nine months old.</p><p>After noticing the creams weren't working during her adult life, in which stress made her skin dramatically worse, Miss Carey ditched them in January 2018.</p><p>She is believed to have developed topical steroid withdrawal (TSW), a painful skin reaction which occurs in reaction to cutting back on steroid creams.</p><p>Larissa Carey, 32, used steroid creams religiously since her diagnosis at nine months old. Pictured, in December 2017 when she realised they had stopped working</p><p>Weaning herself off the strong medication she had used for life led Miss Carey to develop a little-known condition called topical steroid withdrawal (TSW). Pictured, in March 2018, two months after she stopped using the creams</p><p>Miss Carey, pictured in January, is now on an antibody drug which helped calm her eczema</p><p>Miss Carey still suffers from flare ups, most recently the end of February. She said the only trigger she has found is stress, which became a problem in her adult life</p><p>She said: 'When I stopped using the creams, Robbie and I had just bought our first house together.</p><p>'It should have been this wonderful time, but instead I was bedbound with the pain. I'm only in my 30s, but I felt like I was 100.</p><p>'I knew how important it was to push myself to get out and see people or do things, but I just wanted to hide.</p><p>'I was so worried people would stare, and when it's something like skin that you can't even cover up, it's all the more soul-destroying.'</p><p>Doctors hoped Miss Carey, who has battled eczema for most of her life, would eventually grow out of it.</p><p>One in every five British children are affected by eczema at some stage. But 60 to 70 per cent will have got rid of the condition by their teenage years.</p><p>Miss Carey intermittently used small doses of prescribed steroid creams throughout her childhood.</p><p>'I'd find that sunshine and sea water were a massive help,' Miss Carey said. 'I remember my eczema being particularly bad on my joints and how I'd get told off for scratching in class.</p><p>'But, now I think back, it's nowhere near as severe as dealing with TSW.'</p><p>Instead of easing, Miss Carey's eczema became more severe as an adult, although stress was the only trigger she could identify.</p><p>She said: 'I look back now and try to figure out patterns, examining what was happening in my life at particular points and trying to work out why that'd make it better or worse.</p><p>'The major trigger I found was stress. I tried my best to minimise it in my life, but sometimes, it's out of our control.</p><p>'There is an awful lot of pressure in life now. People are so busy and want to do everything as fast as possible. Then there's also things like social media, and how it makes us compare ourselves to others.</p><p>'They sound like little micro-stresses, but they can all add up without you realising.'</p><p>As her skin condition became more severe, Miss Carey's use of steroid cream increased.</p><p>Miss Carey had been using steroid creams since she was diagnosed with eczema at nine months old. She used them more as she got older when stress was a main trigger for her skin</p><p>Miss Carey said her skin became red raw in the months following her ditch of steroid creams, making it painful even to shower</p><p>Miss Carey said her skin was so sore it was painful to wear underwear. The condition left her bedbound in pain, and she was worried about being judged for her appearance</p><p>By around 2015, she was applying it every few hours, having been told to use it as much as she needed.</p><p>But it appeared that the more she used the less effective it became.</p><p>Miss Carey said: 'You see that word steroid and know it's not something you want to be using every single day.</p><p>Eczema is an inflammatory condition of the skin that leads to redness, blistering, oozing, scaling and thickening.</p><p>It usually appears in the first few months of life and affects around 10 per cent of babies.</p><p>Eczema's cause is not fully understood but it is thought to be brought on by the skin's barrier to the outside world not working properly, which allows irritants and allergy-inducing substances to enter.</p><p>It may be genetic due to the condition often running in families.</p><p>As well as their skin being affected, sufferers may experience insomnia and irritability.</p><p>Many factors can make eczema worse. These may include:</p><p>There is no cure for eczema, however, 70 per cent of childhood sufferers no longer have the condition in their teens.</p><p>Patients should avoid known triggers for flare ups and use emollients.</p><p>'By the end, I was getting no relief whatsoever from the creams.</p><p>'I was still having to bandage my wrists and arms every night to minimise scratching in my sleep, and had to be incredibly careful about what products or materials I put on my skin.</p><p>'I used to love cosmetics, and have this whole vanity case of lovely makeup that I can't use. I could only apply moisturiser to my face, or use prescribed shower gel.' </p><p>At the end of January 2018, Miss Carey decided to ditch the steroid creams for good.</p><p>Miss Carey was completely unprepared for the severe reaction to come.</p><p>By March, her skin – particularly on her face – felt tight, red and raw, as if she had been burned. </p><p>After posting photos to some online eczema support groups for advice, a fellow sufferer mentioned TSW for the first time and, after reading about it, Miss Carey became convinced she had it.</p><p>Many have called the 'condition' a fad, however, it has been recognised by the National Eczema Association since 2013. </p><p>Miss Carey said: 'I contacted some friends that work in medicine and they sent me over some studies to read. The condition is such an unknown, especially as controlled studies are virtually impossible, as they'd mean withholding eczema treatment from somebody who really needs it.</p><p>'But the only change I could think of that had sparked this was coming off the creams.'</p><p>Things continued to go downhill, with Miss Carey's whole body become affected.</p><p>'It got to the point where even showering would leave me in tears, as it was so painful and my skin was so raw I couldn't even wear underwear,' she said.  </p><p>Miss Carey had no choice but to start a course of the immunosuppressant drug cyclosporin which was offered by a dermatologist in April. </p><p>An immunosuppressant drug helped to calm Miss Carey's skin after she saw a dermatologist.</p><p>When she had TSW, Miss Carey's skin felt tight, red and raw, as if she had been burned</p><p>Miss Carey's skin has calmed since she was given an antibody drug called dupilumab </p><p>The antibody drug, pictured, is taken by Miss Carey who also has a hypnotherapist and cognitive behavioural therapist, to deal with the emotional turmoil of her skin condition</p><p>She has also been seeing a naturopath to discuss alternative therapies, as well as a hypnotherapist and cognitive behavioural therapist, to deal with the emotional turmoil.</p><p>Miss Carey said: 'People don't understand, and think it sounds silly to be saying this about a skin condition, but there were genuinely times when I wondered how I was going to get through, if the rest of my life was going to be like this.</p><p>'Everyday things that you take for granted were so difficult, like undressing for a shower. Not only was it painful – I also didn't want to have to look at myself.</p><p>'Thankfully, I am feeling much stronger, though the not knowing why this happened, and living with something so unpredictable is still very tough.'</p><p>Miss Carey has now moved on from taking cyclosporin and is beginning a course of an antibody called duplimab, but still gets flare-ups.</p><p>She is urging doctors to treat eczema patients such as herself holistically, rather than simply prescribing steroid creams.</p><p>In 2015, GPs in England wrote about 27million prescriptions for the topical agents used in the treatment of atopic dermatitis (eczema) at a cost of approximately £169million, according to Allergy UK.</p><p>Miss Carey said: 'There is a time and a place for steroid treatments. Everyone is different and they can help some people, but we also need to be looking at triggers like stress and diet.</p><p>'Every journey is different, and individuals need to do what they can to help themselves.</p><p>'There is, in my mind, a clear link between mental health and skin conditions. Stress is a huge trigger, and you are bound to feel low when there is no end in sight and every little thing you do is a huge decision about whether it'll make your skin better or worse.</p><p>'We are getting better at talking about mental health but we still need to be changing our approach and looking at things as a whole.'</p><p>Topical steroid addiction arises from the use of such creams to treat conditions like eczema. </p><p>First described in 1979 in the International Journal of Dermatology, the theory is, over time, the skin becomes ‘addicted’ to the steroids. But it is not widely accepted among the medical community. </p><p>Many have called the 'condition' a fad, however, it has been recognised by the National Eczema Association since 2013. </p><p>Also known as red skin syndrome, the disorder does not have many statistics to show how common it is. One 2003 study from Japan, found that 12 per cent of adults who were taking steroids to treat dermatitis developed RSS. </p><p>It occurs when steroids have been abruptly discontinued after a prolonged or inappropriate length of administration. Women who blush easily are thought to be most at risk. </p><p>Topical steroid addiction has not been reported with correct drug use.</p><p>Excessive sweating and itching is a sign of recovery.  Many sufferers also develop insomnia. </p><p>Treatment focuses on anxiety support, sleep aids, itch management, infection prevention and immunosuppressants.</p><p>Doctors should advise patients to avoid long term or high dose steroid use. Long term is considered to be one-to-two years of regular use.</p><p>Patients are also advised to cut down on steroids slowly but using a lower dose and gradually cutting back to, for example, every other day or a few times a week. </p><p>Do you want to automatically post your MailOnline comments to your Facebook Timeline?</p><p>Your comment will be posted to MailOnline as usual.</p><p>Do you want to automatically post your MailOnline comments to your Facebook Timeline?</p><p> We will automatically post your comment and a link to the news story to your Facebook timeline at the same time it is posted on MailOnline. To do this we will link your MailOnline account with your Facebook account. We’ll ask you to confirm this for your first post to Facebook.</p><p>Part of the Daily Mail, The Mail on Sunday &amp; Metro Media Group</p>

    1 February 07, 2019