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E-health Enables More Personalized Medicine; Group Fights For Digital Patient Rights
Tonia Odom, a 35-year-old patient with rheumatoid arthritis, a sick father and a young son, each of whom has multiple health problems, has found some relief to the problems of managing her families" array of illnesses in at a Duke University clinic that"s a model of the "medical home" approach to medicine, the New York Times reports. "As President Obama and Congress try to create a national system that provides better care for more people at lower cost, you are likely to hear a lot more about this idea. The term, coined by the American Academy of Pediatrics in 1967, is admittedly confusing. It does not mean a return to house calls. Nor need it apply only to people with complex health problems like those of the Odom family."

The White House Announces H1N1 Flu Preparedness Summit
The White House announced that Health and Human Services Secretary Kathleen Sebelius, Homeland Security Secretary Janet Napolitano, Education Secretary Arne Duncan, and Homeland Security Advisor John Brennan will host an all-day H1N1 Flu Preparedness Summit with states to further prepare this nation for the possibility of a more severe outbreak of H1N1 flu. The Summit will be held on July 9, 2009 at the Natcher Conference Center at the National Institutes of Health in Bethesda, Maryland.
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Lawsuit Filed Over Gene Patent
A group of cancer patients, genetic researchers and professional pathologist organizations has filed a lawsuit against Myriad Genetics and the U.S. Patent Office over the patent of two genes associated with an increased risk of breast and ovarian cancers, the New York Times reports. According to the Times, the government more than 10 years ago granted Myriad the patent on the BRCA1 and BRCA2 genes, as well as the company"s genetic test that measures a patient"s risk for the cancers.The lawsuit was filed by the American Civil Liberties Union and is believed to be the first of its kind, the Times reports. The lawsuit challenges the decision to grant patents on genes to Myriad and companies like it. The plaintiffs say that patents on genes restrict medical and research efforts, while companies like Myriad have said that the patent system supports innovation by giving them a temporary monopoly after they make a discovery, thereby rewarding prior investment in research and development.Wendy Chung, the director of clinical genetics at Columbia University and a plaintiff in the case, said, "With a sole provider, there"s mediocrity." The plaintiffs say that BRCA testing would improve with market competition. Furthermore, some plaintiffs argue that certain natural materials cannot be patented. Jan Nowak, president of the Association for Molecular Pathology and a plaintiff in the case, said, "You can"t patent my DNA, any more than you can patent my right arm, or patent my blood."To date, two government panels, including the National Research Council, found no evidence that gene patents result in significant impediments to research or medical care (Schwartz, New York Times, 5/13).
Oncology

NAO Issue New Report And Research Autism Asks: 'Falling Through The Cracks': Why Is The Outcome So Poor For Adults With Autism?

The National Audit Office (NAO) on Friday released findings from a new report exploring the problems and challenges of supporting adults with autism. The aim of the report was to assess current service provision in areas including: health, social care, education, benefits and employment support. It also identified how these areas could be made more effective, efficient and appropriate to the needs of adults with autism and their carers. There are currently over half a million children and adults with autism in the UK, the large majority of whom are adults. The numbers of those diagnosed with autism are on the rise. Autism in adults costs the economy just over ÷£25 billion* each year, yet the NAO report reveals that the provision of services for this vulnerable group is inconsistent. In fact, it showed that the majority of Local Authorities and their NHS partners do not have robust data on the actual number of adults with autism within their area, so they are unable to identify needs and plan accordingly. Key findings of the NAO report: -- Primary health care struggling to cope: - 80% of GPs feel that they need more training to manage patients with autism more effectively and that local training plans for NHS and social care staff often fail to specifically address the needs of adults with autism. - 70% of GPs said that they were not confident that adults with autism in their region were receiving appropriate and adequate care for their needs. - Only 1 in 5 GPs reported that they kept registers of patients with autism. -- Local Authorities and NHS struggling to cope: - Only 18% of Local Authorities and their NHS partners were able to give precise numbers of adults with low functioning autism and only 12% could give numbers of those with high functioning autism. - Only 10% of Local Authorities and their NHS partners commissioned ongoing support for adults with high functioning autism from specialist teams; yet this support could enable more adults with autism to live relatively independently in the community. - Only 22% of Local Authorities said that their Supporting People strategy specifically addressed the needs of adults with autism. 74% of Local Authorities and their NHS partners do not have a specific commissioning strategy for autism in place and only 50% have a strategic planning group dealing with the needs of adults with autism. - 21% of Local Authorities did not know how many children there were with autism and special educational needs in their area and only 45% knew how many children there were with autism and a statement of special educational needs (SEN) that had a completed transition plan in place. - Around two-thirds of Local Authorities and their NHS partners find it difficult to find appropriate residential placements or supported housing within their area for adults with autism; leading to placements further afield. -- Potential not realised: - Only 15 % of adults with autism are in full-time employment despite the fact that this group can often offer employers valuable skills. This leads to not only a waste of potential but also severe pressure on families supporting these adults and to Local Authorities. In fact, regular employment can bring positive psychological and social benefits to adults with autism and greatly increase their self esteem and social integration. Geoffrey Maddrell, Chairman of Research Autism says: "Research Autism is not surprised with the NAO"s findings, which confirm what people with autism, professionals and their families have long been saying; that there is an appalling lack of joined up and accessible provision for adults with autism. Help for autism in children has improved greatly in recent years; in theory this should mean that these children are known to government services and should benefit from a planned and tailored transition from education into adult life. However, the report found that despite good intentions in many areas, there was a general lack of planning and it is clear that the level of expertise is seriously below that which is required. Therefore, the knowledge base of professionals at key contact points needs to be improved otherwise there will be a continued lack of recognition, misdiagnosis and lack of timely and appropriate help; greatly compounding the level of difficulty faced by those affected and increasing the cost to the nation." Maddrell continues: "The report also most importantly reveals that with the correct employment support and mentoring, many of these adults can sustain long term education and career paths in various sectors. But at present this is not happening in many places. This is something that Research Autism feels passionately about and is currently working on a project to address this based on our recent research into employment. We are also planning a high profile conference next month, where Government officials and Local Authorities will be invited to attend, to further examine just why the outcome is so poor for adults and to identify ways forward. To conclude, we may not know the exact causes of autism, but this report confirms the need for better coordinated and informed responses across the lifespan. We know that with correct and timely intervention the quality of life and outlook can be much improved and adults with autism can live fulfilling lives and make a valued contribution to the community. The way that services are currently organised results in a struggle for support and poor outcomes. Research Autism therefore welcomes the NAO"s report and hopes that it allows the Government to start work to resolve this unfair and wasteful situation. Research Autism will also play an important role in this work; evaluating autism interventions and informing key professionals of the results. Otherwise, there is an increasing danger that adults with autism will remain ignored with the attendant human and economic costs that this entails. This must not be allowed to happen." Citation: Knapp et al., The Economic Consequences of Autism in the UK. The National Audit Office


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