River pollution puts 323m at risk from life-threatening diseases, says UN

A week before Russia’s Daldykan river was turned red by a leak from a metals plant, the UN issued a warning as chilling as it was overlooked: 323 million people are at risk from life-threatening diseases caused by the pollution of rivers and lakes.

Cholera, typhoid and other deadly pathogens are increasing in more than half of the rivers in Africa, Asia and Latin America, according to a UN environment programme (Unep) report. Salinity levels have also risen in nearly a third of waterways.

Asia has been worst hit, with up to 50% of all rivers now affected by severe pathogen pollution caused by a cocktail of untreated waste water disposal, agricultural pesticides run-off and industrial pollution.

In a telling footnote to the Russian Norilsk disaster, Nasa released satellite images on 15 September showing that far from being a one-off, the Daldykan river had turned red on multiple occasions in the past 20 years.

The Daldykan river in Krasnoyarsk region, Russia. Photograph: Yelizaveta Udilova/Courtesy of Greenpeace Russia/Reuters

“There is often no incentive for companies and players high up in a river basin not to pollute,” says Paul Reig, an associate for the World Resources Institute. “The impacts are often not noticed until they are carried to water users downstream, especially when there are no regulatory requirements and no implementation or monitoring of water quality downstream to track it back.”

Global water demand from the manufacturing industry is projected to increase 400% by 2050, adding to pressure on river networks.

Reig argues that increased regulatory action is vital to tackle the 80% of waste water worldwide that is returned to rivers untreated. Incentives to recycle waste water are also needed to stimulate market demand for clean water technologies, he says.

But farming and raw sewage discharges also share responsibility for the 2m tonnes of untreated waste water that gushes into the world’s water supplies daily.

While industry, particularly in the developed world, is constrained by laws such as the EU’s water framework waste directive, pesticides and fertilisers can easily slide into water bodies unnoticed.

“The regulation of pollutants in agriculture is much less stringent, compared to industry and municipal waste water,” says Dietrich Borchardt, the lead author of the latest Unep report.

Borchardt points to the clean up of the river Rhine, which was one of the most heavily polluted rivers in the world, as well as effective waste water strategies by companies such as BASF and Bayer as examples of what can be done.

Regulation is pushing businesses across sectors to reduce their water footprint and environmental impact. The Japanese car company Toyota produces cars in China to a higher environmental standard than at home, he argues. And “no mining company is killing thousands of people in accidents. They would lose their licence and existence if they did. It is in their very basic interest not to,” Borchardt says.

There is also a strong public interest involved. An estimated 3.4 million people die each year from diseases associated with water-borne pathogens, nearly half of them children under five.

In the scheme of things, that awful statistic belies another: around 1.2 billion of the world’s people face water scarcity.

With water sources dwindling – Unesco predicts a 40% shortfall in supplies by 2030 – the global population spiralling towards 9 billion and water demand projected to increase exponentially, water management is becoming a vital issue for the 21st century.

Novel nature-based solutions that are cheaper and more effective than hi-tech approaches are gaining interest.

“These can involve leaving rivers intact from channelling, construction work or irrigation that disturbs their natural attenuation capacities,” Borchardt said. “A natural environment can degrade pollutants. Other solutions, especially in agriculture, can involve the preservation and construction of wetlands which are particularly efficient at removing nutrients from water.”

Paludiculture – which can be as simple as as planting water reeds to absorb excess nutrients from water bodies – is a win-win for environmentalists, maintaining a robust carbon sink and threatened peatlands in countries such as Malaysia and Indonesia.

Tackling waste water discharges at source is seen as a crucial first step, to avoid the devastating environmental damage that spillages can cause and the sky-rocketing costs of clean-up operations.

Reig said the “best interventions” to prevent water contamination were legal tools: “The drivers of untreated waste water discharges are poor governance of resources and water quality standards that are often non-existent (in the developing world) and not enforced, if they are there.”

Unep, though, puts greater emphasis on increased monitoring of water balances – knowing how much water there is, where is comes from and where pollutants travel from and to – to counter the scarcity of basic information about the inputs and outputs for waste water discharges into vulnerable water resources.

Borchardt said industry should be seen as a potential ally in the prevention of river pollution. “Business is a part of the solution and must be, because their products will find it more and more difficult to be sold on a huge global scale when there is a huge environmental bill attached,” he said.

River pollution puts 323m at risk from life-threatening diseases, says UN

Our son has a unusual, life-threatening genetic disorder. Help us uncover a cure | Akiva Zablocki & Amanda Zablocki

When our son, Idan, is old enough, he will probably want to know why he has over 1,500 followers on Facebook. He will almost certainly want to know why we have shared dozens of photos and videos of his childhood with strangers. He will almost certainly request why, when he Googles his title, dozens of news articles or blog posts and come up telling his story. We will inform him that, at very first, we shared his story to assist him and us deal with the challenges we faced, but later, we shared his story to inspire other people who may be dealing with equivalent challenges. I hope he understands, and I hope he forgives us for offering him a digital footprint at this kind of a youthful age.

At eight months outdated, Idan was rushed to the emergency room by ambulance with a really lower oxygen fee and rapid breathing. A healthy and powerful child boy until finally that level, he invested the subsequent three weeks in the pediatric intensive care unit, two of those on a ventilator, clinging to life. Idan had pneumocystis jiroveci pneumonia, a unusual kind of pneumonia only a kid with a severely compromised immune method could contract. Idan’s pneumonia led physicians to diagnose him with a existence-threatening genetic disorder called X-Linked Hyper IgM Syndrome, or Hyper IgM for short. It keeps Idan from getting ready to generate any antibodies of his personal to battle off infection. It meant that with no weekly infusions of antibodies and antibiotics prophylaxis, his chances of lengthy-phrase survival were significantly diminished. A bone marrow transplant was the only identified remedy.

It had been the hardest three weeks of our lives, and we returned residence exhausted and hopeless. The very first thing that greeted us back home was a denial letter from our insurance coverage program for the antibody infusions, the only point retaining our son alive. It would be the initial of several healthcare and insurance coverage-associated setbacks that we would encounter in excess of the next couple of years as we fought for our son’s cure. But it set the tone of our struggle and inspired our first battle cry. We made the decision to share Idan’s story with the globe in hopes of not only raising money to support pay for the health-related expenditures that had been piling up but also to find other individuals like Idan and to discover from them.

In the two and a half years considering that, Idan has amassed a healthcare record longer than most nursing residence sufferers. He has endured thousands of needle pokes and dozens of invasive procedures and tests. He has had half a dozen surgeries and a single failed bone marrow transplant.

Nevertheless practically nothing looks to have phased him or slowed him down. He was identified at Seattle Children’s Hospital, the place he acquired his transplant, as the happiest baby they had witnessed throughout the process. His favored element was entertaining the staff of 14 doctors and nurses who came in in the course of his morning rounds. He learned his ABCs and 123’s throughout the long hospital stays ahead of most youngsters say their initial word. And he has grown and thrived regardless of obtaining a severely compromised immune method and numerous restrictions on human interaction.

But we want much more than that for Idan we want a remedy. We lately formed the Hyper IgM Foundation, a patient advocacy organization that will offer assistance and sources to families residing with Hyper IgM, educate the medical neighborhood regarding diagnosis and treatment and offer funds to support critical study and developments in gene editing, bone marrow transplant and other acknowledged and unknown therapies that could help Idan and the hundreds of others in the world grappling with Hyper IgM.

Our loved ones has been place by means of trial following trial, every single a lot more striving than the final. But we’ve learned so a lot, and through the wreckage, we have discovered anything new and beautiful past measure: hope. It’s challenging not to feel hope in the business of the most charming, loving and bright little one a mother or father can hope for. We are total of pride, and we come to feel utter joy in his presence. But we know that, with out mothers and fathers like us – empowered, informed and engaged – children with his condition do not stand a opportunity. Informed dad and mom join their child’s health care crew and have to continually make tough selections. Bone marrow transplants are lengthy and quite risky procedures. Even when a match is found, 15-20% might not survive the 1st yr, and a lot of a lot more have long-lasting effects from the chemotherapy and graft v host ailment. Mothers and fathers must be vigilant with the dozens of medicines and infusions their children require post transplant as well as with rigid isolation procedures.

For all these dad and mom who have the indicates and the desire to advocate for far more study into a remedy for a uncommon illness like Hyper IgM, we motivate you to do so. Patient advocacy groups are crucial to medical developments, are extraordinarily successful equipment and help methods and, importantly, can provide a meaningful path to a cure.

Our son has a unusual, life-threatening genetic disorder. Help us uncover a cure | Akiva Zablocki & Amanda Zablocki

Why all babies should be screened for life-threatening Duchenne at birth

Last week, Translarna, also known as ataluren, which prompts the body to manufacture a protein that protects against muscle damage which is absent in children with the disease, was licensed under special measures.

Penny hails the introduction of the new drug, but also fully supports the work of the Muscular Dystrophy Campaign and a cross-party group of MPs, who recently recommended that the National Screening Committee update their criteria so that Duchenne can be tested for at birth.

The muscle-wasting condition affects around 2,500 children and young people in the UK, and this update could help the 100 or so babies who are diagnosed each year.

At the moment, Duchenne isn’t one of the five main conditions that are tested for, such as sickle cell disease and cystic fibrosis. The reason is that it doesn’t fit the NSC’s criteria, which says that a condition needs to be:

a) symptomatic at or shortly after birth, and

b) be treatable at or shortly after birth.

With Duchenne, there isn’t definitive data of when boys become symptomatic. It can be six to 12 months after birth, but newborn screening is typically done with a blood test five days after birth, and accurate tests are not available yet.

On top of that, it isn’t ‘treatable’ per se, because there still isn’t a cure. But, all that could be changing and this is why the MPs are so keen for the NSC to update its criteria while it is already carrying out a review of its practices.

Baroness Celia Thomas, a member of the House of Lords and Vice Chair of the All Party Parliamentary Group for Muscular Dystrophy, explains why they’re calling for a change in newborn screening to include Duchenne.

She says that a new treatment is being trialled, and if all goes well, it could be licensed by next year: “At the moment there isn’t a treatment but if and when there is, early treatment will be vital. We don’t want to find there’s a potential treatment but some boys are being diagnosed rather late. That’s why we’re keen to get on with this and we’re hoping we can persuade the NSC to update their criteria.”

Experts are also calling for the new drug to be made available on the NHS as soon as possible. Translarna can be used in children with the specific mutations aged over five who are able to walk

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said: “This drug is designed for a very specific cause of the condition and can only be used to treat around 10 percent of children and young people affected.

“However, it is a significant milestone, and we are very hopeful other potential treatments in development may soon reach this stage.” It’s a step in the right direction and though it will only help a small amount of people with Duchenne, it does show that treatments are going the right way.

But there is still the problem that it’s hard to tell if Duchenne is symptomatic “shortly at or after birth”. It did used to be available for newborn screening in Wales for around 20 years, only the tests weren’t accurate enough to see if newborns did have symptoms. That’s why the NSC is reluctant to include it again, but Baroness Thomas assures me that an accurate test is being developed.

“It’s no good having an accurate test then saying it doesn’t fulfil our criteria,” she says. “We’re saying don’t be so rigid about this. Even if they put caveats saying it can be done if there’s a kind of treatment. What we don’t want is to lose any time.”

Her reasoning makes sense, and it’s why the MPs are appealing to the UK Government to overhaul this criteria for screening babies. It’s had a good reception, with 82 per cent of parents of children with Duchenne saying they were in favour of it. Early diagnosis would allow parents to anticipate health, housing, educational and emotional needs of their child and to manage the onset of symptoms through cardiac care, physiotherapy and steroid treatments. It would also give parents the information to consider the implications of trying for further children.

Penny says: “If I’d known straight away he could have had the treatment earlier. I was in the process of moving house and the house I was moving to was unsuitable for him. Some people go on to have children two years later and realise both have Duchenne. It’s not to say they might not go ahead and have another boy but you can have screening and IVF to try and avoid it happening again.”

Mum Jeanette George had her son Alex screened through the programme in Wales before it was closed in 2011. She says: “Having the choice to screen Alex was a positive thing for us. Knowing Alex has Duchenne has allowed us to plan and ahead and to manage his symptoms. Alex gets assessed every six months, so any change in his wellbeing will be picked up immediately.”

But not all parents agree with this. Some would rather not have newborn screening, because they’d rather enjoy their child’s life without any complications for as long as possible. Penny, who knows many other families whose kids have Duchenne, says: “Some people feel it’s too much to take on board when you have a small baby and it might prevent you from bonding with him.”

She doesn’t agree with this viewpoint though, pointing out: “Parents do bond with other kids who have obvious disabilities.” She adds: “You’re preventing your child having interventions that could help them. There’s never a good time to find out. That’s part of parenting – you have to accept that things can go wrong.”

Dr Anne Mackie, director of programmes at the UK National Screening Committee, told the BBC: “My duty is to make sure if we do recommend a test to parents, that it is a really good one. But that also we are able to say to parents of a positive test, ‘This is what we can do for you and it will make a difference.’

“I know the APPG is pushing for improvements in tests and there are some exciting developments, but for the moment, we can’t say hand on heart if your baby has this test, this will happen and we can help.”

Like all new initiatives it has its positives and its negatives, but the viewpoint that really matters is that of the children themselves. Penny asks her son Dan what he thinks, and he says: “Newborn screenings would be a good idea to help the whole family adjust.”

Because that’s the thing with Duchenne – it doesn’t just affect the boys, it affects the entire family. It’s why all these families are hoping that the NSC will update their criteria, the more treatments will come in, and new tests will be made so that other families won’t have to go through the same delays that they did.

Why all babies should be screened for life-threatening Duchenne at birth