Group calls for free malaria treatment in Africa

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Posted on 30th September 2008 by Gordon Johnson in Brain Injury

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NOTE: Malaria not only kills 1 million people each year, survivors may suffer brain damage. Children are the most vulnerable to this disease.

Date: 9/30/2008 9:22 AM

By DONNA BRYSON
Associated Press Writer

JOHANNESBURG, South Africa (AP) _ Making tests and treatment for malaria free dramatically increases the number of people who seek treatment for the disease that kills 1 million people a year, an international medical aid group said Tuesday.

Medecins Sans Frontieres, or Doctors Without Borders, acknowledged that that has sobering implications for the cost of wiping out malaria, but insisted it is necessary.

The group released a report with recommendations for combatting malaria based on its experience with hundreds of thousands of patients in Chad, Sierra Leone and Mali. It said free treatment, expanding the use of a quick test and training villagers to identify and treat simple cases themselves are key.

Christine Jamet, head of MSF’s operations in Chad, told reporters at a news conference in Johannesburg that the number of patients treated in one region of that central African country after free tests and drugs were introduced increased in one year from 10,000 to 100,000.

Some 90 percent of the villagers in the region subsisted on less than a dollar a day, she said. If people living in those circumstances are asked to pay for treatment, Jamet said, “they will have to decide: ‘Do I choose to pay, or do I choose to buy food? It’s as basic as that.”

Seco P. Gerard, a Belgian-based MSF policy adviser, said existing clinics and medical staff could absorb some of the increase, but not all.

“Health has a cost, that’s for sure,” Gerard said. “It costs what it costs. It needs to be done.”

The U.N. has launched an initiative to dramatically step up the fight against malaria with the ultimate aim of eliminating the disease, which is spread by mosquitoes and can be easily prevented or treated when resources are available. The head of the U.N. project said MSF’s recommendations made sense.

Expanding testing will “ensure that we are treating malaria and not other diseases,” said Awa Marie Coll-Seck, executive director of the Roll Back Malaria Partnership, a joint project of the World Bank and the U.N. health, children’s and development agencies. That would safe lives now lost because of improper treatment, as well as help experts refine their estimates of the toll malaria is taking.

In launching its malaria campaign on the sidelines of the U.N. General Assembly last month, Roll Back Malaria estimated it would cost $5.3 billion in 2009, $6.2 billion in 2010 and $5.1 billion annually from 2011 to 2020. Coll-Seck in an interview with The Associated Press said some of that spending would be for providing free tests and treatment.

Roll Back Malaria was not involved in compiling the report MSF released Tuesday, but works with MSF on malaria projects. The U.N. group estimates 3.3 billion people — more than half the world’s population — live in areas where they risk contracting malaria, and the disease kills nearly 1 million people every year, most of them children in Africa. Survivors may suffer brain damage.

“Those figures are even more revolting when you know we have the medical tools … to diagnose the disease and treat it,” Gerard said. “But the fact is that very few patients have access.”

MSF treated 1.3 million malaria patients around the world last year. Pilot MSF projects in Chad, Sierre Leone and Mali focused on what the group saw as the two main barriers for many poor people: the costs of tests and of treatment with the state-of-the-art cocktail of drugs known as ACT, and the difficulties of reaching health centers.

“I fully agree with the strategy of using village health workers to provide health care for malaria,” said Helen Counihan, an expert with the London-based Malaria Consortium. But she said more research was needed on village health workers’ use of the rapid diagnostic tests MSF is recommending be more widely used.

The consortium, which is not connected to MSF or Tuesday’s report, hoped to have results next year from a study it is conducting in Zambia evaluating whether community health workers continue to use the tests accurately over time with just routine supervision after initial training.

Sunil Mehra, executive director of the Malaria Consortium, applauded MSF’s recommendations, but said the next steps would be finding funding, and political support at country level for change.

“We need to have some consistency amongst the donors,” Mehra added.

Copyright 2008 The Associated Press.

Accessibility and the Internet

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Posted on 27th September 2008 by Gordon Johnson in Brain Injury

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The world is forever changing and nowhere is it more evident than in the field of technology. For all of us who have been on the Web for the past decade, the internet of today is a far cry from its humble beginnings. In the past few years Web pages have gone from text based to technological wonders full of flash animation, photos, videos, security systems and spam blockers, all of which have made Web sites more difficult or impossible for the disabled to use.

Back “in the day” we were faced with the obstacle of how to make web pages accessible to disabled users. This necessitated the need for “text only” versions of web pages. Today, individuals who are blind, dyslexic, or vision impaired access the Internet using a “screen reader”. The software reads on screen text out loud and uses a braille-enabled keyboard. But advances in Web design can severely inhibit the use of this software.

For those hard of hearing, the advent of audio/visual material presents its own obstacles. Most Web sites do not offer closed captioning for their audio/visual content. For those with limited dexterity there is the additional challenge to manipulate the keyboard in traditional ways and many Web sites do not opt to set alternative means of navigation into their sites.

The recent class action suit filed against Target may change the way the internet works. The suit was filed by the National Federation of the Blind in 2006 and contends that Target violated the Americans with Disabilities Act as well as two California civil rights statutes. While Federal Web sites are required to be handicap accessible, Section 508 of the federal Rehabilitation Act requires that all private-sector firms that are doing business with the federal government comply as well.

Several states have passed laws requiring that online businesses provide access for disabled persons. However many of these laws do not provide clear and consistent guidelines for accessibility and many online entities are not aware of the requirement that their sites be accessible to those with disabilities.

Its a win-win situation for businesses who choose to comply. The same design elements which make a Web site more accessible are the same elements which make a Web site search engine friendly.

Interestingly, as global markets become more the norm, pressure from overseas may change the way Web sites are constructed because many countries have very clear laws about accessibility and these laws apply to the Internet.

It is clear that the problem of Web accessibility will be an important issue in the coming years. There are currently major movements to establish a set of guidelines for accessibility for the Web. The most well-known is The Web Accessibility Initiative (WAI), which is part of the World Wide Web Consortium. The WAI developed the Web Content Accessibility Guidelines (WCAG) 1.0 which explains how to make Web content accessible to people with disabilities. These initiatives will address problems with Web accessibility including visual, auditory or cognitive impairments, motor or mobility problems and seizures.

The final goal is to assure that sites are correctly built and maintained so that all of these users can be accommodated while not impacting non-disabled users.

Apple to make iTunes more accessible for the blind

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Posted on 26th September 2008 by Gordon Johnson in Brain Injury

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Date: 9/26/2008 10:45 AM

By JAY LINDSAY
Associated Press Writer

BOSTON (AP) _ Apple Inc. and the Massachusetts attorney general have reached an agreement that will give blind people equal access to Apple Inc.’s iTunes and iTunes U programs.

Attorney General Martha Coakley said details of the agreement will be announced Friday afternoon.

A statement from Coakley’s office says Apple will ensure that both iTunes — the company’s digital entertainment store — and iTunes U for college students are accessible to assistive software for the blind.

Copyright 2008 The Associated Press.

Stroke and Trauma

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Posted on 25th September 2008 by Gordon Johnson in Brain Injury

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A side note to the story below: Most people would never connect these two words: stroke and trauma. But stroke is a problem that affects at least 10% of our clients, yet such strokes are never diagnosed acutely. Strokes in automobile wrecks happen predominantly in two ways:

First, the twisting of the neck in the whiplash mechanism, damages a cerebral artery (one that takes blood to the brain). This damage can result in the formation of a blood clot, that when it releases, flows to the brain and causes a clot. This is called an “artery dissection.

The second way is that many people after a whiplash injury to their neck go see a chiropractor for the neck stiffness and pain. The process of torquing a neck in a neck manipulation can cause an artery dissection, similar to the way it happens in an accident.

I will blog on this topic more in the coming weeks, but if a motor vehicle wreck survivor starts to have stroke type symptoms, not only insist on an ER visit, but insist that they be given the same medication that stroke victims get. The ER doctors may be slow on the uptake on this, but perhaps a story like the below AP story, can help get their attention.

Study: Extending time of stroke drug treatment OK

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Posted on 25th September 2008 by Gordon Johnson in Brain Injury

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Date: 9/24/2008 6:52 PM

By ALICIA CHANG
AP Science Writer

LOS ANGELES (AP) _ Stroke sufferers can still benefit from clot-busting medicine even if they receive it an hour or so beyond the current three-hour window after symptoms start, an important new study suggests.

The finding could potentially extend treatment to thousands more people each year and prevent many from being left disabled. However, it does not change long-standing advice that stroke victims seek immediate help if they feel sudden numbness or weakness in the face, arm or leg.

“Don’t wait,” said Dr. Larry Goldstein, director of Duke University’s stroke center and a spokesman for the American Stroke Association. “If you think you are having symptoms, call 911.”

The study by European doctors found that the clot dissolver could safely be given up to 4½ hours after the start of symptoms. Results were published in Thursday’s New England Journal of Medicine.

Stroke is the nation’s No. 3 killer and the leading cause of disability such as paralysis or speech loss. More than 700,000 Americans suffer a new or recurrent stroke each year and more than 150,000 die. The most common strokes result from a blood clot blocking an artery supplying blood to the brain, starving brain cells of oxygen.

The best treatment is giving patients the drug TPA to break up the clot and open the artery. A large federal study in 1995 showed that people fared better when given the drug within three hours of the start of a stroke. Beyond that, studies have shown the drug can raise the risk of dangerous bleeding in the brain and may not be as effective.

However, only about a third of stroke victims seek help that fast, and fewer than 5 percent get TPA now. Some doctors have been trying to push the time limit, and the new study is the largest and most rigorous to test that approach.

Doctors randomly assigned 821 stroke patients in Europe who were not treated within three hours to receive an intravenous dose of TPA or a dummy drug up to 4½ hours after symptoms started.

Doctors found those given TPA fared better — 52 percent survived without major disability compared with 45 percent of the others. The drug group had more cases of bleeding in the brain — 27 percent versus 18 percent. However, it was serious in only about 2 percent. The death rate was similar in both groups.

The study was funded by Boehringer Ingelheim Pharmaceuticals Inc., which markets TPA as Actilyse overseas. TPA is sold in North America by Genentech Inc. as Activase.

Last week, the same researchers reported similar results in a less rigorous observational study of 664 stroke patients also given TPA after three hours.

Dr. Lee Schwamm, director of Massachusetts General Hospital’s acute stroke program, estimated that nearly 20,000 more patients a year could be treated under the time extension.

“I strongly believe it has the potential to have a major impact on practice” in the United States, said Schwamm, who had no role in the research.

Some experts worry that some patients and doctors may take their time treating strokes given the extra window.

“It is very clear that our focus must remain on the door-to-needle time. Every minute matters during a stroke,” Dr. Patrick Lyden, head of the University of California, San Diego stroke center, wrote in an accompanying editorial.

Stroke neurologist Dr. Walter Koroshetz of the National Institutes of Health said treatment guidelines deserve a fresh look “to try to break this three-hour barrier.”

Koroshetz said it’s not clear which patients might benefit most from the extra time. Since the European study focused on mild stroke cases, it’s unknown if severe stroke victims would also benefit, he said.

Dr. Kenneth Gaines, stroke director at New Orlean’s Ochsner Medical Center, said he might be more willing to consider giving TPA in borderline cases. But he remained concerned about the bleeding side effects.

“The real solution is to move faster,” Gaines said. “There is diminishing return the longer you delay treatment.”

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On the Net:

NEJM: http://content.nejm.org

American Stroke Association: http://www.strokeassociation.org

(This version corrects that 1995 study found that people fared better with quick drug treatment, not that it saved lives.)

Copyright 2008 The Associated Press.

State Brain Injury Associations: Advocacy on the Move

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Posted on 24th September 2008 by Gordon Johnson in Brain Injury

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The acknowledgment that brain injury is an important concern has been sparked by stories of soldiers affected by the war in Iraq. But long before 911 or our involvement in Iraq, the United States has been well served by the Brain Injury Association of America in its advocacy for brain injured individuals.

On the state level, state brain injury associations are active in all aspects of brain injury. You can find your state office by visiting http://biausa.org/stateoffices.htm Each year these associations hold state conferences to address the needs and concerns of those in the brain injury field and those affected by brain injury on a personal basis.

In Wisconsin we are represented by BIAW: http://biaw.org/site/

During this year’s conference they are hoping to address a myriad of topics and concerns.

Many have inquired about the possibility of a summer camp for TBI individuals. If you are interested in participating in a summer camp please email Terri Swanson at admin@biaw.org or write to them at BIAW, 21100 W. Capitol Dr. Ste. 5, Pewaukee, WI 53072. They are also looking for input or suggestions on topics or speakers.

In order to increase the number of Certified Brain Injury Specialists in Wisconsin they are contemplating holding a training and examination the day before the conference. This would fulfill the annual 10 hours of in-service training required of service providers.

They are also interested in any input on what program, resource or service needs should be addressed as well as seeking interested survivors, family members and professionals who might be willing to speak during the program.

The 19th Annual Wisconsin Conference on Brain Injury will take place on May 12th and 13th at the Radisson Hotel & Conference Center in Green Bay, WI. Please check their website for updates on the schedule. http://biaw.org/site/

If brain injury touches your life in any way I strongly urge you to attend your state conferences and to become a member of your state association. It is numbers that make the difference.

VA quadruples payment to vets with brain injuries

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Posted on 23rd September 2008 by Gordon Johnson in Brain Injury

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Date: 9/23/2008 6:23 PM

By PAULINE JELINEK
Associated Press Writer

WASHINGTON (AP) _ The government is more than quadrupling monthly payments to some veterans suffering brain injuries, as the number of such war wounds mounts from the roadside bombings of Iraq and Afghanistan.

The new compensation is based on the assessment that even some troops who have the mildest form of traumatic brain injury could end up with chronic headaches, memory loss, anxiety or other symptoms that will hurt their chances of getting a job or job advancement — thus reducing their lifetime earnings by 40 percent.

In a regulation announced Tuesday by the Department of Veterans Affairs, officials changed the way they evaluate the injuries. Depending on the extent of their injuries, vets now can be judged up to 40 percent disabled in such cases. The previous rating of 10 percent for such injuries was set by a 1961 regulation.

The rating change means that an unmarried veteran, who now receives $117 monthly in compensation, could receive as much as $512. Extra money would also be calculated for troops with spouses and children.

Mild traumatic brain injury is basically a form of concussion that results from severe shaking of the brain after a blast. It can cause blurred vision, insomnia, irritability and other problems.

The VA change represents the “best judgment of medical experts about what the impact” of such injuries is and how best to evaluate veterans who come to the VA for help, said Tom Pamperin, a deputy director for the department’s compensation and pension service.

The change goes into effect in 30 days and those receiving compensation under the old system can have their cases reviewed.

Roughly 1.7 million American troops have served in Iraq and Afghanistan and a RAND Corporation study estimated early this year that up to 320,000 may have suffered a traumatic brain injury. Officials say that the vast majority of the cases are mild — and that most veterans recover in weeks or months. The new, higher disability rating is for the smaller percentage who suffer permanent damage, Pamperin said.

The extra disability compensation is expected to cost nearly $124 million through 2017. That’s based on the assumption that the number of troops who get such payments will rise steadily in the coming years to 5,100 for 2017 from about 800 new cases a year now, Pamperin said.

He said about 200 troops with brain injuries annually went to the VA before the start of the Iraq war, where insurgent use of roadside explosives and car-bombs has made brain injuries, amputations, burns and post-traumatic stress disorder the vast majority of wounds from the campaign. Insurgents are also increasingly using explosives in Afghanistan.

Officials believe compensation levels are already correct for troops with moderate and severe traumatic brain injury that can involve open head wounds.

Though most troops with the severe cases already can be rated at 100 percent disabled, an increase has been approved for additional care they might need. That is, a single vet who needs assisted care can get $3,145 a month compared to the current $2,527 payment.

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On the Net:

Department of Veterans Affairs www.va.gov

Copyright 2008 The Associated Press.

Norwegian court rejects lawsuit by divers

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Posted on 23rd September 2008 by Gordon Johnson in Brain Injury

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Date: 9/9/2008 2:34 PM

By BJORN H. AMLAND
Associated Press Writer

OSLO, Norway (AP) _ A Norwegian court on Tuesday dismissed a lawsuit by nearly 20 divers who claim their health was seriously damaged from working at extreme depths during oil exploration in the North Sea three decades ago.

The Oslo District Court said the government could not be held legally responsible for the divers’ health problems because they were not directly employed by the government at the time. The divers had sought a total of 277 million kroner (US$49 million) in damages.

Scores of so-called pioneer divers were sent to extreme, sometimes experimental depths while working on offshore oil installations in the 1970s and 1980s, according to a government commission that studied the case. Some of them have complained of lung and brain damage.

The lawsuit was filed by 18 divers and the widow of another diver. It said the government violated the European Convention on Human Rights because it knew or should have known the risks of deep-sea diving and failed to put in place the regulations necessary to protect the divers.

The Oslo court said the government could not be held legally responsible — despite its involvement in the oil industry — because the divers were employed by diving and oil companies operating on the Norwegian continental shelf.

However, it said there was a lack of precedent and suggested a Supreme Court decision on the matter would be helpful.

“I am very surprised about the verdict,” said Marius Reikeraas, a lawyer representing the divers. “The way it looks now we will likely aim for an appeal directly to the Supreme Court.”

The outcome could bring a spate of other suits by injured divers.

The government has accepted moral and political responsibility for the divers, but rejects any legal obligation. However, in 2004, Parliament authorized compensation of nearly $500,000 for each of about 200 divers, in addition to previous payments of more than $90,000 each.

Copyright 2008 The Associated Press.

US researchers call off controversial autism study

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Posted on 22nd September 2008 by Gordon Johnson in Brain Injury

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Date: 9/17/2008 8:32 PM

By CARLA K. JOHNSON
Associated Press Writer

CHICAGO (AP) _ A government agency has dropped plans for a study of a controversial treatment for autism that critics had called an unethical experiment on children.

The National Institute of Mental Health said in a statement Wednesday that the study of the treatment — called chelation — has been abandoned. The agency decided the money would be better used testing other potential therapies for autism and related disorders, the statement said.

“There will be parents who are disappointed,” said Richard Nakamura, the scientific director of NIMH. “We recognize that for children there is a fine line for the risk-benefit ratio. You have to be pretty certain of the overall safety of the procedure.”

The agency wasn’t confident enough in the procedure’s safety, Nakamura said.

The study had been on hold because of safety concerns after another study published last year linked a drug used in the treatment to lasting brain problems in rats.

Chelation (kee-LAY’-shun) removes heavy metals from the body and is used to treat lead poisoning. Its use as an autism treatment is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science. Mercury hasn’t been in childhood vaccines since 2001, except for certain flu shots.

But many parents of autistic children are believers in the treatment, and NIMH agreed to test it.

The researchers had proposed recruiting 120 autistic children ages 4 to 10 and giving half a chelation drug and the other half a dummy pill. The 12-week test would measure before-and-after blood mercury levels and autism symptoms.

The study outline said that failing to find a difference between the two groups would counteract “anecdotal reports and widespread belief” that chelation works.

Autism is a spectrum of disorders that hamper a person’s ability to communicate and interact with others. Most doctors believe there is no cure.

In canceling the study, the agency noted it would take another year to review the study and three years to do it. In the meantime, the agency said, it was likely that other research would “provide deeper understanding of the causes of autism and more refined avenues for developing treatments.”

NIMH should reconsider its decision to cancel the chelation study, said Rebecca Estepp, national manager of Talk About Curing Autism, a support group for families with autistic children.

“By discontinuing this study, the NIMH will not prove the effectiveness of chelation therapy one way or another. Instead, they have merely left parents with more unanswered questions,” Estepp said in a statement.

But several scientists praised the decision, including the lead author of the rat study, which found lingering problems in animals that did not have elevated lead levels.

“I think they’re making the right decision not to go forward with the study,” said Barbara Strupp, a professor of psychology and nutritional sciences at Cornell University.

“Our data raise concerns about administering (the chelation compound) to children who do not have elevated levels of heavy metals,” Strupp said.

Dr. Paul Offit, chief of infectious diseases at the Children’s Hospital of Philadelphia, agreed with the decision to cancel.

“Suppose that a child suffers a severe side effect from chelation,” said Offit, author of “Autism’s False Prophets,” a new book on autism research. “Without any evidence it’s helpful, I think it’s unethical.”

The chelation drug proposed for the study, DMSA, can cause side effects including rashes and low white blood cell count.

“This was a wise and careful decision,” said Ellen Silbergeld of Johns Hopkins University’s Bloomberg School of Public Health, who had been invited to comment on the study during an earlier review, in an e-mail.

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On the Net:

National Institute of Mental Health: http://www.nimh.nih.gov/

Copyright 2008 The Associated Press.