Saturday, 29 March 2008

Epileptics and employment - Catch 22

Some hesitant to back disabilities law overhaul
In the wrong direction? Advocates say new legislation might weaken rights of
the disabled

By Andrew Mollison
Cox News Service


WASHINGTON - Leaders of several national disability groups are hesitating to
endorse a recommendation by President Bush's disability advisers that he and
Congress rewrite the Americans With Disabilities Act next year.
The National Council on Disability, whose 15 members were nominated by Bush
and confirmed by the Senate, reported this month that ''many Americans with
disabilities feel that a series of negative court decisions is reducing their
status to second-class citizens, a status that the
ADA was supposed to remedy
forever.''
Most disability advocates agree. But some fear that if Congress takes up the
council's proposed ''ADA Restoration Act,'' it might end up making the law
weaker, instead of stronger.
''In this political climate, is it smart to open up the
ADA? We know that if
we come up with our proposed changes, the other side will come up with
theirs,'' said Curtis Decker, executive director of the National Association of
Protection and Advocacy Systems, which includes 80 agencies across the country
that represent people with physical, cognitive and mental disabilities.
Such concerns, while understandable, are misplaced, according to Lex
Frieden, the council's chairperson. He said opposition to discrimination against
persons with disabilities extends across party lines.
''It's a valid question to raise,'' said Frieden, senior vice president of
the Institute for Rehabilitation and Research. ''In response, I would say that
when the National Council on Disability first proposed the
ADA [in 1988], a
conservative, Ronald Reagan, was president, and there was a very conservative
Republican Senate. But the law moved forward at a rapid pace and was signed
by another Republican, the first President George Bush, in 1990.''
The independent federal advisory agency praised the law's successes in
improving access to transportation, communications and buildings that serve the
public.
But it said the
ADA's protections for workers have been undermined since
1999 by a series of Supreme Court decisions, and lower court judgments that
relied upon those decisions.
The decisions made it harder for people with disabilities to prove that they
have disabilities, bolstered the defenses that can be used by those accused
of discrimination, and limited the damages and legal costs that can be
collected by those whose complaints are upheld.
That helps explain why only 35 percent of adults with disabilities have
full-time or part-time jobs, the council said.
Charlotte Chenoweth, a registered nurse who analyzed medical records in
Tampa, Fla., had a seizure and was diagnosed with epilepsy. Until she and her
physician found the right combination of medications for reliable control of her
seizures without side effects, she could not drive to work.
But Chenoweth lost her attempt to force her employer to let her work at home
or to adjust her hours to coincide with the rides she could get to work. The
judge ruled that Supreme Court decisions meant that since her epilepsy had
been mitigated by the time her case came up, she was no longer protected by the
ADA.
In fact, according to the council, Supreme Court decisions would have
allowed her employer to fire her for having epilepsy, as long as the epilepsy was
under control.
''This is true even if the employer . . . puts up signs that say 'epileptics
not welcome here,' inaccurately assumes that all persons with epilepsy are
inherently unsafe, or has the irrational belief that epilepsy is contagious,''
said the council's report, called ''Righting the ADA.''
In a similar case cited by the council, a pharmacist with diabetes was fired
after he said he needed a half-hour off every four hours in order to take
insulin and eat a small meal. It was ruled that because he could control his
diabetes through such measures, he didn't have a disability covered by the
ADA.
The revisions proposed by the council included the recommendation that the
current ban on discrimination ''against an individual with a disability'' be
reworded to ban discrimination ''on the basis of disability.''
''They would restore the original meaning,'' said Robert Burgdorf, a law
professor at the University of the
District of Columbia who worked on both the
1988 and the new drafts. ''If an employer discriminates against you on the
basis of epilepsy or diabetes, the question should be whether you are being
discriminated against, not whether you have epilepsy or diabetes.''
John Kemp, a
Washington attorney who served on the council under President
Clinton, endorsed the current council's plan. ''It shouldn't be true, it
can't be true, that I - wearing four prostheses and using an electric
scooter-wheelchair - could possibly be considered not covered by the
ADA, because I
have mitigated the limitations caused by my impairment.''

_http://www.sltrib.com/nationworld/ci_2491522 _
http://www.sltrib.com/nationworld/ci_2491522


Epilepsy advocates propose strategies to heighten treatment expectations


Epilepsy advocates propose strategies to heighten treatment expectations

Survey reveals room for improvement in balancing seizure control and side effects

WASHINGTON (March 28, 2008) — On the heels of the nation’s largest event dedicated to the epilepsy community, the National Walk for Epilepsy, advocates today announced their recommendations in response to a new national survey uncovering key challenges facing the epilepsy community. Challenges include gaps in patient-physician communication around medication-related side effects and low public awareness of epilepsy.

According to the survey, sponsored by ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, 75 percent of epilepsy patients experience medication-related side effects and for the majority, these impact their daily lives, including 57 percent who say work or school are affected. A disconnect exists between patients and healthcare professionals surrounding their discussions on these side effects. While 98 percent of physicians report discussing medication-related side effects with patients, less than half (47 percent) of epilepsy patients report these discussions take place. And, more than one-quarter of patients report they sometimes feel reluctant to broach this topic during office visits. Not surprisingly, healthcare professionals underestimate the number of patients experiencing medication-related side effects, estimating this figure at just 43 percent. The most common side effects according to the survey are fatigue, poor memory, weight gain or weight loss and loss of concentration.

“These findings suggest treatment expectations among epilepsy patients are simply too low. According to the survey, 61 percent of people with epilepsy believe that side effects are just something they have to live with,” said roundtable moderator and Epilepsy Foundation CEO and President Eric Hargis. “People with epilepsy should be proactive in discussing their treatment plans, opening up about the side effects they experience and sharing how these side effects are affecting their lives.”

Panelists at the nine-person roundtable included some of the nation's premiere epileptologists, patients and caregivers and celebrity advocates, including Greg Grunberg, star of NBC’s television series "Heroes" and father of a son with epilepsy, and New York Giants defensive back Geoffrey Pope whose grandmother has epilepsy.

Improving Treatment Plans

Roundtable participants agreed that people with epilepsy and healthcare professionals should work together to ensure treatment plans are tailored to the individual. According to the survey, 85 percent of patients would prefer to have a more active role in making their treatment decisions.

“It is crucial for patients to speak up and be a part of developing their treatment model,” said Georgia Montouris, M.D., director of epilepsy services at the Boston University School of Medicine and Boston Medical Center.

Healthcare professionals surveyed say they would recommend an alternative treatment plan at least half the time for those patients experiencing medication-related side effects. "We need to increase the focus on individualizing treatment plans and strive for optimal balance between seizure control and minimization of side effects so that we can improve the overall well-being of people with epilepsy,” added Dr. Montouris.

Roundtable participant Caitlin Purcell, 17, explained how her healthcare professional started her on one medication, but when she was still experiencing seizures he added new medications to her regime to help her further manage her condition. Physicians often try a variety of therapy mixes to customize the treatment approach, “and Caitlin’s physician was trying to find the right ‘cocktail’ for her,” noted Dr. Mark Spitz, head of the Adult Comprehensive Epilepsy Program at the University of Colorado.

Participants also discussed the need for new treatments. “We need to continue funding research and development as there is a need for drugs that help us better straddle this balance until a cure for epilepsy can be found," said Hargis.

Other recommendations for improving communication and treatment plans included:

  • Patients and caregivers should advocate for themselves and discuss their treatment plans, side effects and what other steps can be taken with their healthcare professionals. “As long as there is seizure activity, there are still things that can be done or treatments that can be tried,” said Grunberg.
  • Patients should strive for a more individualized treatment plan by sharing a daily diary or record of how they are feeling, any medication side-effects or breakthrough seizures they experience with their healthcare professional.
  • Patients and caregivers, as well as healthcare professionals, should raise their standards and not settle if the patient is still experiencing seizures or side effects. “It’s not a trade-off. We may not be able to get every patient to the point of experiencing no seizures and no side effects, but we should never stop trying,” said Dr. Montouris.
  • Finally, panelists encouraged patients to not hesitate to seek a second opinion when patients are not achieving their treatment goals.

Raising Public Awareness of Epilepsy

According to the survey, three-quarters of people with epilepsy and 90 percent of physicians feel that the general public is not well-informed about epilepsy. Roundtable participants agreed that this is a major cause for the stigma surrounding epilepsy and some shared their stories of how this has impacted their lives.

“The other kids (in school) are sometimes afraid of me. And sometimes even if they want to have me over after school, their parents are afraid, especially if they haven’t seen me have a seizure,” explained 14-year-old panelist Carly Richards of Chicago.

Participants addressed the need for continued public education programs that focus on eliminating stigma associated with epilepsy, such as the March 29th annual National Walk for Epilepsy. The panelists encouraged all people who have epilepsy or know someone with the condition to speak out and share their experiences.

“We are at a tipping point for bringing epilepsy out in the open,” said Grunberg. “We need to continue the dialogue we started here today to increase awareness and break down the stigma that is unfairly associated with this disorder.”

###

The roundtable, which took place in Washington, D.C. on Friday, March 28, was hosted by the Epilepsy Foundation and ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

Please visit: www.epilepsyfoundation.org to find more information about upcoming 2008 initiatives resulting from the roundtable discussion.

About the Survey

Richard Day Research fielded a survey to epilepsy patients and healthcare professionals. Data from both audiences were collected in January 2008. Healthcare professional data included 459 healthcare professionals—comprised of 155 primary care physicians (family, general, or internal medicine) and 304 neurologists. Patient data included 414 people diagnosed with epilepsy, screened for having seen a healthcare professional for epilepsy within the last two years.

About the Epilepsy Foundation

The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s goals are to ensure that people with seizures are able to participate in all life experiences; and prevent, control and cure epilepsy through services, education, advocacy and research, so not another moment is lost to seizures. For additional information, please visit www.epilepsyfoundation.org.

About ORTHO-McNEIL NEUROLOGICS

Headquartered in Titusville, N.J., ORTHO-McNEIL NEUROLOGICS focuses exclusively on providing solutions that improve neurological health. The company currently markets products for Alzheimer's disease, epilepsy and acute and preventive migraine treatment. ORTHO-McNEIL NEUROLOGICS, in conjunction with internal and external research partners, continues to explore new opportunities to develop solutions for unmet healthcare needs in neurology.

original http://www.eurekalert.org/pub_releases/2008-03/gi-eap032808.php

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I wish to comment on some of the points here but for now have just posted the news item as sometimes can be difficult to track later.


Tuesday, 25 March 2008

Epilepsy marked by neural 'hub' network

Epilepsy marked by neural 'hub' network

EUREKALERT

Contact: Tom Vasich
tmvasich@uci.edu
949-824-6455
University of California - Irvine

Abundance of hubs influences seizures and offers insight into how epilepsy develops, UCI study finds

Irvine, Calif., March 25, 2008 An increased number of neuron hubs in the epileptic brain may be the root cause for the seizures that characterize the disorder, according to a UC Irvine study.

Researchers Robert Morgan and Ivan Soltesz with the Department of Anatomy and Neurobiology identified that these hubs a small number of highly connected neurons are formed in the hippocampus during the transition from a healthy brain to an epileptic one. The increased number of connections among these hubs, they found, circulate and amplify signals to such a degree that they overwhelm brain networks, leading to epileptic seizures.

The study appears this week in the online early edition of the Proceedings of the National Academy of Sciences.

The structure of the epileptic brain differs substantially from that of a healthy one, and our discovery of this hub network offers insight into how epilepsy may develop, Morgan said. By establishing therapeutic measures that can selectively target these hub cells, we may be able to create a treatment for epilepsy.

The researchers used a computer model of a moderately injured hippocampus the brain region involved in many forms of epilepsy to create the signaling networks that mimic an epileptic brain, and they found that one featuring a greater number of neuronal hubs promoted the onset of seizure.

By comparing this model with previous animal model studies of epilepsy, they identified these hubs as the network conduits for seizures. Soltesz said that previous studies revealed the existence of these hubs but did not define their role.

This study is a great example of integrating data from biomedical informatics with basic and clinical research to advance the effort to understand and potentially treat disease and disorders like epilepsy, added Soltesz, who is chair of the anatomy and neurobiology department and a member of UC Irvines Epilepsy Research Center.

Epilepsy affects more than 2 million individuals of all ages in the U.S. alone and at least 50 million worldwide. It is characterized by the occurrence of spontaneous, unpredictable seizures, which can interfere with daily life, be dangerous, and lead to death of some brain cells. While much information is available about the abnormal communication of neuronal networks in epilepsy, the basic mechanisms, involving both genetic and acquired elements, are not fully understood.

###

The National Institutes of Health and the UC Irvine Medical Scientist Training Program supported the study.

About the University of California, Irvine: The University of California, Irvine is a top-ranked university dedicated to research, scholarship and community service. Founded in 1965, UCI is among the fastest-growing University of California campuses, with more than 27,000 undergraduate and graduate students and nearly 2,000 faculty members. The third-largest employer in dynamic Orange County, UCI contributes an annual economic impact of $3.6 billion. For more UCI news, visit www.today.uci.edu.

News Radio: UCI maintains on campus an ISDN line for conducting interviews with its faculty and experts. The use of this line is available free-of-charge to radio news programs/stations who wish to interview UCI faculty and experts. Use of the ISDN line is subject to availability and approval by the university.

Contact:
Tom Vasich
949-824-6455
tmvasich@uci.edu

UCI maintains an online directory of faculty available as experts to the media. To access, visit www.today.uci.edu/experts.
For UCI breaking news, visit www.zotwire.uci.edu.

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