Speech: We need national debate on rare diseases to offer the best possible care

first_imgGood afternoon everyone.It is such a pleasure to be here to celebrate and raise awareness of rare diseases with you all – and it is a pleasure to see some of you again who were present during the excellent event hosted in the Houses of Parliament earlier this year. And even more of a pleasure to be celebrating through eating cake!So, thank you to the British Paediatric Surveillance Unit for inviting me to such a special and enjoyable event.Today, I really want to address the incredible young people here in the audience. Like many of you, I got ill as a child and for a very long time nobody knew what was wrong with me.I was undiagnosed and went through all the usual experiences of the diagnostic odyssey – getting very sick from childhood and being referred to many doctors who did their best but just couldn’t find out what was wrong with me. This went on for 30 years. Finally, a wonderful neurologist realised what was wrong and referred me to a specialist who diagnosed me in just 20 minutes.It was such a relief, but as I acquired more and more specialists and we began to try to get the right medical regime for me, I got much, much sicker and found trying to co-ordinate all the tests and appointments and new medications – while still working – impossible.Then the NHS stepped in and saved me and gradually, the pieces fell into place and I have clawed my way back to stable health.I still have my battles, you may have seen that the other day I fainted right in the middle of giving a speech in the House of Lords, but I know that this is nothing compared to many of you here today – and for that you have my deepest respect.I am absolutely thrilled to be the minister for rare diseases again and committed to make a real difference. One thing I know from my own experience is that without my family I simply would not be here. I am sure many of you here feel similarly about your families and carers.I want to take a moment to thank all clinicians, researchers and others who are working so hard to improve care for people with rare diseases. I’d like to highlight a few recent achievements in this area.GenomicsOver the past years we’ve learned more and more about how our individual genetic make-up can lead us to develop a rare disease. And the UK’s 100,000 Genomes Project has helped with that. The headline is of course that in December 2018, the 100,000 Genomes Project completed its sequencing phase – a fantastic achievement by NHS England, Genomics England and other partners.The project has already delivered life-changing results for patients, with 1 in 4 participants with rare diseases receiving a diagnosis for the first time. We are still returning results to some patients and will make sure that this is a priority over the course of 2019.Let me tell you about one of these participants – a 4-year-old little girl called Jessica. She had a rare condition that caused epilepsy and affected her movement development. From looking at her specific DNA, Jessica received a diagnosis – ‘Glut 1 deficiency syndrome’ – and as a result her doctor recommended a very specific diet that has helped reduce seizures for others with her condition. Jessica and her family were able to take immediate action, help control her epilepsy and improve her condition.I’m delighted that based on the amazing achievements from the 100,000 Genomes Project, NHS England launched the Genomics Medicines Service (GMS), making our country the first in the world to integrate genomic technologies, including whole genome sequencing, into routine clinical care. And here’s the important part – seriously ill children who are likely to have a rare genetic disorder will be offered whole genome sequencing under the GMS. As demonstrated by Jessica and numerous others, we hope this will bring an end to the diagnostic odyssey for many ill children.To continue cementing the UK as world leader in genomics, in February I announced that government is developing a UK Genomics Healthcare Strategy. I’m very pleased to say that the work is well underway and the strategy will provide a clear, national vision setting out how the genomics community can work together to make the UK the global leader in genomic healthcare – for the benefit of patients. My colleagues have been inviting key stakeholders and representative groups, including the rare diseases community, to share their views and contribute to the coherent national vision, and are continuing to do so. The strategy will be ready for publication this autumn… so watch this space.NHS insertAnother very exciting initiative I want to share with you is the NHS insert, which I announced in February and the NHS are now implementing. The insert gives NHS England a way to hold providers to account and improve services for rare diseases. I have met with NHS England just this week, who have assured me that the insert has been included and will be monitored through the Quality Surveillance Systems, with trusts reporting on it for the first time this September.There will be up to 3 criteria providers report on: the diagnostic odyssey is no longer an odyssey you know more about your rare conditions through significant research efforts and breakthroughs you may grow up in a system where you have a smooth transition to appropriate adult services I assure you that government hopes to make a real difference on these matters and remains as committed as ever to improving the lives of those living with rare diseases.I’m looking forward to hearing from the patients, researchers and advocaters here today, and we can all look forward to discussing the important issues raised over some tea and cake later. So, let me finish by saying thank you very much for your patience and attention. Please enjoy today. Let me explain these each in turn.Firstly, the provider must ensure that there is a person responsible for co-ordinating the care of any patient with a rare disease. Secondly, the provider must give every patient with a rare disease an ‘alert card’. This will include information about their condition, treatment regime and contact details for the individual expert involved in their care. Finally, the provider must ensure that every child has an active transition to an appropriate adult service, even if that adult service is not the commissioning responsibility of NHS England.It is my sincere intention that changes like these make a difference to the lives of patients with rare diseases, people just like you.Post-2020 frameworkThere is still much to be done to improve the experience of patients with rare conditions. That’s why I want to lead a national conversation on rare diseases, and how we care better for people.We want to talk to staff, patients, experts and researchers.We want to use in-person and online methods to capture views on the big strategic issues that affect you.We recognise there are a range views, and that’s why the department and I will be canvassing views – drawing them together into a big, compelling strategic framework to improve care for people with rare diseases.It won’t address every challenge – but it will be an ambitious attempt to build on our world-leading commitments, set out in the 2013 strategy.We will be working with patient organisations and experts to develop a mechanism for capturing honest views on your experience. This is the start of the process towards a future framework, an opportunity to gather evidence and identify common themes and proposals to help us develop the vision for a post-2020 rare disease framework.ClosingThere is so much more I would like to tell you today, but time is running away and I just want to close with this.In the UK Rare Disease Policy Board, the forum and me as your minister and fellow patient, you have people advocating for you at the heart of the system. To the children and young people in the audience here – I am fighting as your minister so that you and future generations may grow up in a world where: care co-ordination an alert card transitionlast_img read more

Trans Mountain pipeline costs are adding up for Canadian government

first_img FacebookTwitterLinkedInEmailPrint分享National Observer:The Trans Mountain oil pipeline is costing a Canadian Crown corporation some staggering interest expenses that cast doubt on strong revenues from the infrastructure touted in the federal government’s recent economic update.The interest expenses were $20 million over a single month in September, right after Prime Minister Justin Trudeau’s government purchased the pipeline and related assets from Texas energy company Kinder Morgan for $4.5 billion. As part of the purchase, the government also had to set aside an additional $500 million as a security deposit in case of environmental damage, and this appears to be part of the interest expenses.If the interest expenses continue to pile up at that rate over the year, they will come to represent a larger sum than the amount of money that the government has said the pipeline is on track to raise this year primarily from toll charges.Oil pipelines earn revenues by charging tolls to companies that are shipping fuels on the infrastructure. The Trudeau government has said that the proposed Trans Mountain expansion project, if completed, would generate more revenues and could be sold back to the private sector, along with existing assets, as a profitable venture.In a new quarterly report, the Canada Development Investment Corporation (CDEV), the Crown corporation that now owns and operates the pipeline through a network of subsidiaries, said it incurred $21.27 million in interest expenses related to Trans Mountain during the third quarter ending Sept. 30.The pipeline from the oil patch to the west coast and its related expansion project was acquired by Ottawa in a deal that cleared Aug. 31. These two dates represent approximately a month’s worth of expenses, or $255.24 million over the year. That is well above the “over $200 million” that Finance Minister Bill Morneau’s fall fiscal update said the pipeline was on track to make in “earnings before interest, taxes, depreciation and amortization,” or EBITDA, a type of metric used in finance to show a performance snapshot. EBITDA doesn’t include things like capital investment costs or expenses linked to debt.Tom Sanzillo, director of finance at the Institute for Energy Economics and Financial Analysis, co-authored a report in June with Kathy Hipple, a financial analyst at the institute and corporate finance lecturer at Bard College, stating that the Canadian government was facing at least $11.6 billion in costs to complete the pipeline. “This transaction and the cost of further planning and construction could add a $6.5 billion unplanned expenditure to Canada’s budget during FY 2019,” the report states, boosting Canada’s projected deficit by 36 per cent.Sanzillo told National Observer that while it is not uncommon for a government economic development transaction to keep revenues, capital costs and operational expenses separate, the interest expenses and fiscal update numbers represent an incomplete picture. “For a project of this size and importance,” said Sanzillo, “the executive has a responsibility to also produce an all-in-one, true and accurate inclusive project accounting that answers the question: ‘How much is this costing the Canadian taxpayer?’ These financial disclosures are partial, and absent a full accounting, are irrelevant. Because it is only a partial explanation, it says nothing about the financial viability of the project.”More: The Trudeau government’s Trans Mountain purchase has triggered staggering interest expenses Trans Mountain pipeline costs are adding up for Canadian governmentlast_img read more

NEWS SCAN: Avian flu, tainted Baxter flu materials, anthrax attack findings , drug-resistant malaria, homeland security, E coli in well water

first_imgFeb 26, 2009Avian flu detected in Vietnam, EnglandThe H5N1 virus struck poultry in another Vietnamese province, Dien Bien in the northern part of the country, raising the number of affected provinces to 11, Xinhua, China’s state news agency, reported today. Authorities culled about 1,460 ducks and destroyed more than 1,000 eggs to stop the spread of the virus. Elsewhere, British officials have detected avian influenza at two small Bernard Matthews turkey-breeding farms in England, but have so far ruled out H5 and H7 strains, the United Kingdom’s Department for Environment Food and Rural Affairs (DEFRA) said today[Feb 26 Xinhua story][Feb 26 DEFRA press release]Czech lab incident updateNew details about H5N1-contaminated virus samples that caused a scare at a Czech Republic lab emerged today in a report from the Canadian Press (CP). The tainted Baxter International product was an “experimental virus material” that was supposed to contain the H3N2 virus. The product was distributed to an Austrian company to subcontractors in the Czech Republic, Slovenia, and Germany. Officials continue to investigate.[Feb 26 CP story]Scientists share anthrax investigation findingsThe chemical components of the Bacillus anthracis spores sent in letters in the 2001 bioterrorism incidents don’t match the bacteria in a flask linked to Bruce Ivins, according to experts who presented their findings at an American Society for Microbiology biodefense meeting on Feb 24, Nature News reported yesterday. The Federal Bureau of Investigation’s (FBI’s) Jason Bannan, however, said that spores from the flask could have been removed and grown under different conditions that exposed them to different chemicals. The FBI has alleged that Ivins, who committed suicide, mailed letters in 2001 that contained the deadly pathogen.[Feb 25 Nature News story]WHO says drug resistance could stonewall malaria controlParasite resistance to artemisinin detected at the Thailand-Cambodian border could undermine global efforts to control malaria, the World Health Organization (WHO) said in a statement yesterday. The parasite can adapt more easily to monotherapies, so health officials have instead supported treating uncomplicated infections with a combination therapy containing artemisinin. The WHO said it has received a $22.5 million grant from the Bill and Melinda Gates Foundation to help contain the spread of the resistant parasites.[Feb 25 WHO statement]White House orders homeland security reviewThe Obama administration issued its first presidential study directive (PSD) in Feb 23 ordering an interagency team to review how the White House coordinates its homeland security and counterterrorism capacities, Federal News Radio (FNR) reported yesterday. The White House has replaced homeland security directives with PSDs, FNR reported.[Feb 25 FNR story]E coli turns up in wells near outbreak siteSeventeen of 74 private wells in Locust Grove, Okla., tested positive for Escherichia coli, a pathogen that caused an outbreak linked to a local restaurant, the Tulsa World reported yesterday. The state’s attorney general has said poultry litter from area farms may have contaminated the restaurant’s water supply, which was found to contain poultry DNA earlier this month.[Feb 25 Tulsa World story]last_img read more

Sales down, vendors point to economy

first_imgAs the number of farmers’ markets on and around campus continues to rise, many of those markets — including the Trojan Fresh Market, which will be on campus on Thursday — have seen profits fall, though most blame the slip on the economy and not on the increased competition.Besides the on-campus Trojan Fresh Market, there are at least six other markets near USC. Many of these markets report that their profits are down, but individual vendors often benefit by selling at multiple venues.Farmville · A man shops for vegetables at the farmers’ market located at Adams Boulevard and Vermont Avenue. The market, which is near St. Agnes Catholic Church, runs on Wednesdays from 2-5 p.m. – Amaresh Sundaram Kuppuswamy | Daily TrojanHelen Lee, who manages the farmers’ market at the Shrine that runs every Tuesday, said she does not think her market is competing with the Trojan Fresh Market or any of the others.“We don’t consider us in competition with USC,” Lee said. “And the Trojan Fresh Market doesn’t affect our business. In fact, [USC] Hospitality came through here and took some vendors to the Trojan Fresh Market … We encourage that.”Lee said she never had any intention of making money from the farmers’ markets. Instead, she wanted to help the vendors make money, so when they’re approached and asked to join other farmers’ markets, she views it as a good thing.“[The Shrine farmers’ market] helps a lot of local neighbors who came here as vendors,” Lee said. “We’re definitely here just for the people.”Vendors at the Shrine, however, have also found business to be slow so far this year.Olove Boyd, an employee for Heavenly Delights, which sells cobbler at the Shrine and other farmers markets, said business is down right now.“Usually it’s slow in the beginning, but hopefully it picks up,” Boyd said. “I think it’s the economy. Farmers’ markets are not a necessity … When there are cutbacks, people take hits.”Boyd noted that it is USC that drives her business, even with the presence of the Trojan Fresh Market.“The majority [of customers] are students and USC employees,” Boyd said. “USC helps our business or we wouldn’t be here.”Dexter Scott, who sells beans at the Shrine farmers’ market, said he has also experienced a decrease in sales this semester.“It is one half of last year’s gross income,” Scott said.A farmers’ market on Vermont Avenue and Adams Boulevard seems to be experiencing the same problems as the Shrine farmers’ market. Most of the vendors are seeing less and less business, but still, they say the economy is at fault rather than competing markets.“Each year it seems to get slower and slower because of the economy,” said Luis Buenrostro, who sells produce.The market’s manager, Kimberly Edwards, said she also believes the decline in profits is because people do not have the money to shop at farmers’ markets. She said she does not think she is losing clients to other farmers’ markets in the area.“A lot of these customers who come here … they follow us where we go,” Edwards said. “Our business is slow because of the recession, and farmers’ markets are more expensive than the store.”Edwards added that USC drives the market, even though the Trojan Fresh Market is a more convenient option.“We got a lot of people from USC coming here,” Edwards said. “We see doctors, students, teachers … We get a big variety of people from USC.”But Meera Dahyabhai, marketing chair for the student group Environment First, which is involved in the Trojan Fresh Market, said she thinks the competition has affected Hospitality’s farmers’ market.“The revenue patterns have overall decreased due to competition with other markets,” she said.Still, she said she does not think the increasing number of markets is a bad thing.“It’s all about reaching the same goal,” Dahyabhai said. “The main goal is to fund that idea of organic and fresh products to support local vendors.”last_img read more