Posted by: Patricia Williams | October 14, 2009

Tuberous Sclerosis How did my child get this disorder?

Tuberous Sclerosis
What is tuberous sclerosis?
Tuberous sclerosis is a disease that causes growths in the skin, brain, kidneys, eyes, heart or lungs. These growths are usually benign (non-cancerous). The first signs of tuberous sclerosis may be seizures and spots on the skin. Some people who have tuberous sclerosis may have learning problems or seizures that are hard to control.

Tuberous sclerosis affects every 1 in 6,000 people in the United States. The disorder occurs in both sexes and in people of all races and ethnic groups.

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How did my child get this disorder?
About half of the time, tuberous sclerosis is passed from a parent to a child, or inherited. If one parent has tuberous sclerosis, every child born to that parent has a 50% chance of inheriting the disease.

However, in about half the children who have tuberous sclerosis, the mother and father have no signs of it. It seems that sometimes a normal gene changes (mutates) to the abnormal form that causes tuberous sclerosis.

Currently, there is no test to identify a person who has the tuberous sclerosis gene if that person has no signs or symptoms of it.

If parents who have one child with tuberous sclerosis want to have another child, they should talk with their family doctor. The family doctor can refer them to a genetic counselor or medical geneticist who can help them decide what to do.

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What are the symptoms of tuberous sclerosis?
Your doctor may suspect tuberous sclerosis if your baby has a condition called cardiac rhabdomyomas (benign heart tumors) at birth or starts to have seizures, especially a kind of seizure called infantile spasms.

However, signs of tuberous sclerosis can first appear later in childhood. These symptoms include:

* White spots on the skin (called hypopigmented macules) that glow under a special lamp
* A rash on the face (called facial angiofibromas) that may look like acne
* Problems with the kidneys (associated with growths in the kidneys)
* Areas of very thick skin
* Growths under or around the nails
* Coughing or shortness of breath
* Mental disabilities or developmental problems

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Posted by: Patricia Williams | October 14, 2009

Selling Sickness: How Drug Ads Changed Health Care

Selling Sickness: How Drug Ads Changed Health Care

by Alix Spiegel

October 13, 2009
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CorrectionThe audio and a previous Web version of this story mistakenly said that between 1992 and 2008 the average number of prescriptions that Americans get increased by 58 percent. The actual increase was 71 percent.
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October 13, 2009

David Couper went to his doctor after watching a small green creature jump up and down on the nail of an infected toe.

For Anne Nissan, a 17-year-old in Prescott, Ariz., the image that stayed with her was of a party. Women were on a roof in a city, pimple-free and laughing, utterly unbothered by the cramps that immobilized her once a month.

And then there is Samantha Saveri, a transportation planner in Baltimore. She remembers bunnies and the promise of digestive regularity.

Three different people in three different places were all driven to contact their doctors after watching an ad for a prescription medication on television. Each walked into a doctor’s office with a specific request, and walked out with a prescription for exactly the medication he or she desired.

Part 1: Doctor Decisions All Things Considered, Oct. 8

In the mid-1970s, an unconventional health researcher named Jack Wennberg discovered an unusually high rate of hysterectomies in a small town in Maine. If the rate continued, nearly 70 percent of Lewiston women would be without their wombs by age 70. That was just one of a series of studies conducted by Wennberg that led him to a very surprising conclusion about health care: A large portion of the medical care Americans get is unnecessary, and the structure of the health care system is the reason why. The system can push doctors to prescribe care that doesn’t improve patient health.Read this story.

Part 2: Patient Behavior Morning Edition, Oct. 12

The behavior of patients in the U.S. health system has changed dramatically over the past couple of decades. We’ve been transformed from passive patients who almost blindly follow doctors’ orders into active and aggressive consumers of health services. A look at how that change came about, and how it affects the behavior of doctors. Read this story.

Part 3: Marketing Sickness Morning Edition, Oct. 13

Prescription drug spending is the third most expensive cost in the U.S. health care system. The average American gets 12 prescriptions a year, and this number only seems to grow larger. There are more medicines on the market today than in 1992, with Americans now spending $175 billion more per year. A look behind these numbers and what drove the increase in prescription drug consumption in America.

The Rise Of Prescription Drugs In America

Prescription drug spending is the third most expensive cost in our health care system. And spending seems to grow larger every year. Just last year, the average American got 12 prescriptions a year, as compared with 1992, when Americans got an average of seven prescriptions. In a decade and a half, the use of prescription medication went up 71 percent. This has added about $180 billion to our medical spending.

While there are more medicines on the market today than in 1992, researchers estimate that around 20 percent of the $180 billion increase has absolutely nothing to do with the number of medications available, or increases in the cost of that medication.

To understand this change, one place to look is Wilder, Vt. There, in a tasteful housing complex on the side of a mountain, is the home of Joe Davis.

Davis is retired now, but in his speech and manner it’s easy to hear the breezy salesmanship that made him so successful. Davis was an adman: “I was trained — or I was toilet-trained as we like to say — in packaged goods,” Davis says. “General Foods, Procter & Gamble — that kind of thing.”

Until the 1980s, the kind of people who sold stuff like packaged goods were completely different from the kind of people who sold stuff like prescription drugs. In those days, drugs ads were for doctors, not the public. They were designed by people who worked at these small, technically minded medical advertising companies and targeted this small, technically minded audience.

“Nobody had ever thought that these drugs should be or could be advertised to the patients. It was just outside of people’s brains,” Davis says. “They thought that only doctors could understand the products. They’re technical products. They’re scientific products.”

But it was more than that. There was a fear — shared by doctors and drug companies alike — that advertising drugs directly to consumers could be harmful. Both the drug companies and the doctors worried that even though consumers couldn’t really evaluate whether or not a drug was appropriate, they might become convinced by an ad, and pressure their doctor to prescribe it.

Not only might doctors end up passing out inappropriate medications, but also, drug ads could disrupt the doctor-patient relationship — a relationship that, at the time, was mostly a one-way street. Davis tells this story about his own mother, a sophisticated woman whom he found fumbling with a bottle of pills one day. When he asked what she was taking:

” ‘Well,’ she said, ‘I take a yellow pill, a green pill and a white pill.’ I said, ‘That’s great. What are they for?’ “

His mother had no idea what they were for, Davis says. All she knew was that her doctor had told her to take them.

“It was very passive from the patient standpoint,” Davis says. “The patient just took whatever orders were given by the doctor.”

An Advertising Revolution

It used to work like this: Doctors decided what to prescribe. Drug companies — through medical advertisers — tried to influence doctors. Patients did what they were told.

The only problem, says Davis, was that the system wasn’t working out for the drug companies. For them, the system was much too slow.

Because doctors exclusively held the keys to the kingdom, drug companies spent enormous amounts of time and money trying to get their attention. To give you a sense, the average doctor got around 3,000 pieces of mail a year from the drug industry, and to break through this noise often took years.

And so Davis, who had previously only sold packaged goods, approached William Castagnoli, the then-president of a large medical advertising company. The two came up with a solution: They would advertise directly to the patient. They’d get the patient to go in and ask the doctor for the drug. “Pull the drug through the system,” Davis says with a certain amount of glee.

There was only one small problem with this solution: It was almost impossible to do.

In the early 1980s, FDA regulations required that drug ads include both the name of a drug and its purpose, as well as information about all the side effects. But side-effect information often took two or three magazine pages of mouse print to catalog, and this wouldn’t do for a major television campaign. As Castagnoli says, “We couldn’t scroll the whole disclosure information over the television screen — OK?”

But then, in 1986, while designing an ad for a new allergy medication called Seldane, Davis hit on a way around the fine print. He checked with the Food and Drug Administration to see if it would be OK.

“We didn’t give the drug’s name, Seldane,” he says. “All we said was: ‘Your doctor now has treatment which won’t make you drowsy. See your doctor.’ “

This was one of the very first national direct-to-consumer television ad campaigns. The results were nothing short of astounding. Before the ads, Davis says, Seldane made about $34 million in sales a year, which at the time was considered pretty good.

“Our goal was maybe to get this drug up to $100 million in sales. But we went through $100 million,” Davis says. “And we said, ‘Holy smokes.’ And then it went through $300 million. Then $400 million. Then $500 million. $600 [million]! It was unbelievable. We were flabbergasted. And eventually it went to $800 million.”

Pharmaceutical companies took note.

Today, drug companies spend $4 billion a year on ads to consumers. In 1997, the FDA rules governing pharmaceutical advertising changed, and now companies can name both the drug and what it’s for, while only naming the most significant potential side effects. Then, the number of ads really exploded. The Nielsen Co. estimates that there’s an average of 80 drug ads every hour of every day on American television. And those ads clearly produce results:

“Something like a third of consumers who’ve seen a drug ad have talked to their doctor about it,” says Julie Donohue, a professor of public health at the University of Pittsburgh who is considered a leading expert on this subject.

“About two-thirds of those have asked for a prescription. And the majority of people who ask for a prescription have that request honored.”

Whether the increase in the number of prescription drugs taken is good or bad for patient health is an open question. There’s evidence on both sides. What’s not up for debate is this: By taking their case to patients instead of doctors, drug companies increased the amount of money we spend on medicine in America.

Posted by: Patricia Williams | October 13, 2009

Nearly one in six South Carolinians don’t have health insurance

17.4 percent in S.C. lack health insurance
By DAVID QUICK – The (Charleston) Post and Courier
Nearly one in six South Carolinians don’t have health insurance, according to new U.S. Census Bureau data.

South Carolina had a 17.4 percent rate statewide. Texas, with a statewide average of 24.1 percent, was at the bottom of the heap. Massachusetts topped all states with 4.1 percent lacking health coverage.

Columbia ranked 292th with a 16.6 percent uninsured rate. Charleston was 206th with 14.1 percent; Rock Hill, 352nd with 18.6 percent; and North Charleston, 481st with 25.1 percent.

*
*
Uninsured in S.C.

CHARLESTON

14.1 percent

COLUMBIA

16.6 percent

MOUNT PLEASANT

6.2 percent

NORTH CHARLESTON

25.1 percent

ROCK HILL

18.6 percent

SOUTH CAROLINA

17.4 percent

SOURCE: U.S. Census Bureau

Mount Pleasant had the lowest percentage of people lacking health insurance in 2008 among relatively large cities in the Southeast. Its 6.2 percent ranked 22nd among all U.S. cities.

The figures come from the U.S. Census Bureau, which obtained data from the nation’s 532 cities with populations of at least 65,000.

The census numbers are no surprise, said Dr. Casey Fitts, founder of Tri-County Project Care in the Charleston area. Rates of uninsured are higher where a higher percentage of poor live.

But, he said, there’s another story under the surface.

“There are people who work and can’t afford health insurance,” Fitts said. “And for us who pay taxes and have health insurance, an estimated $2,000 is cost-shifted to us every year.”

Fitts’ Project Care is a nonprofit relief agency that recently opened its membership to qualified uninsured workers and small businesses with three or more employees.

Fitts said that, with political will, South Carolina can put itself in position to be a leader in providing health care reform. As an example, he pointed to support of a cigarette tax, as proposed by House Speaker Bobby Harrell, that would provide subsidies to community care clinics.

The statistics were part of the Census Bureau’s American Community Survey, which provides a statistical portrait of the characteristics of the nation’s population in 2008. Health insurance coverage was one of three new topics added to the survey for 2008.

Every question on the ACS is included either because the data is required to satisfy one or more federal laws, regulations or court decisions, or is needed to manage federal programs and allocate more than $400 billion of federal tax dollars annually to states and local communities.

The ongoing survey of about 3 million addresses every year provides one of the most complete pictures of our population available. It covers more than 40 topics, such as income, educational attainment, housing and family structure.

Posted by: Patricia Williams | September 20, 2009

HEALTH CARE REFORM:Nothing About Us, Without Us!

Why health care reform is crucial for people with disabilities
From an op-ed by Ari Ne’eman, founding president of the Autistic Self-Advocacy Network (ASAN), in The Huffington Post.

As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group — people with disabilities. Ranging from veterans with disabilities who receive care through the Veteran’s Administration health care system to the many low-income disabled adults who are eligible for Medicaid, the disability community interacts with the public health care infrastructure in the United States in a wide variety of ways. As we consider how to reform, streamline and expand that infrastructure through any of a variety of means, it is incumbent upon us to remember the key issues for making sure that health care reform doesn’t leave disabled adults and youth behind.

1. Long Term Services and Supports (LTSS): Ever since the passage of the Americans with Disabilities Act 19 years ago, the main priority of the disability rights movement in the United States has been eliminating the institutional bias in Medicaid. This bias imprisons Americans both young and old in nursing homes and institutions in order to get the basic services necessary to survive. This is both tragic and unnecessary. Individuals and families are forced to choose between having to fend for themselves or living out their lives in institutional care. Both research and the experience of countless people with disabilities show that, with the right support, people can live in the community rather than be relegated to institutions. Community living settings, when properly implemented, improve quality of life, reduce the risk of abuse, make it more likely that a person with a disability will be able to work and are actually much less costly than institutional care.

Right now, the main obstacle to LTSS reform is the bias in Medicaid long term care policy which reimburses states for costly and segregated institutional care but makes it extraordinary difficult to use the same money to support adults in the community instead. A person who uses a wheelchair or an adult with a developmental disability such as autism or Down Syndrome can get the government to pay for a costly institutional placement with low quality of life, but often must spend years on a waiting list for far less expensive services, such as attendant care that could keep them in their home or their family’s. The abuses that take place within nursing homes and institutions are well documented and are truly shocking. This situation benefits nobody but lobbyists for the nursing home/institutions industry, which has been quite active in opposing reform on this issue.

The Senate Finance Committee has recognized the need for some action on LTSS, but so far has only recommended limited reforms like increasing the federal Medicaid reimbursement for Home and Community Based Services by 1%. The real answer can be found in the Community Choice Act, which would add a benefit to Medicaid that would require states to allow people who meet an institutional level of care to instead control their own supports while choosing to live at home or with their families. President Obama won kudos from the disability community by supporting the Community Choice Act during his campaign, but since then the White House has signaled that this issue will not be considered as part of health care reform. The Community Choice Act should be properly considered a civil rights issue, as it means the difference between segregation or integration for millions of disabled citizens as well as many senior citizens for whom LTSS reform may be what keeps them out of a nursing home and living a life of dignity. Health care reform that fails to include this issue is health care reform that fails to meet the needs of over 50 million Americans with disabilities.

2. Health Care Disparities for People with Disabilities: Both Congressional leaders and the President have talked about the importance of addressing health care disparities on the basis of race, income and geography. But what about disability health care disparities? Too often, medical problems faced by people with disabilities are assumed to be normal and unavoidable as a result of being disabled. However, disability and ill health should not be considered synonymous. People with disabilities face significant barriers to access quality health care, due to both poverty and accessibility problems. In addition, most physicians lack necessary expertise on common co-existing medical issues that people with disabilities of various kinds face.

For Autistic adults and children, who often have sensory hyper- and hypo-sensitivities as well as trouble with social and/or verbal communication, communicating medical problems can be exceedingly difficult. For people with Down Syndrome and other developmental disabilities, a doctor’s expertise on co-existing medical issues can mean the difference between living full, meaningful and fulfilling lives or facing an early death due to preventable secondary conditions. For Deaf people, getting access to sign language interpreters in hospitals and doctor’s offices is often exceptionally difficult. For many wheelchair users or people with other mobility impairments, even getting in the door to the doctor’s office can be a problem. If they can, they often face inaccessible examination tables and other medical equipment that prevents them from getting the same medical care available to any other person. One woman with a mobility impairment was told by her physician that the scales they possessed were inaccessible to people with her disability, but that she should consider going to the post office and being weighed on the scale for large packages instead!

Respectfully, people with disabilities are not postal mail. It is disturbing to think of the number of preventable medical conditions caused by lack of access to appropriate medical care. This is imposing a cost that can be measured both in terms of quality of life and dollars spent later on preventable secondary medical conditions. Congress must recognize people with disabilities as an underserved population subject to health disparities by undertaking both data collection and serious policy reform to ensure that issues of access, expertise and coverage are address for the disability community.

3. Insurance Discrimination: According to the Executive Director of Access Living, a Center for Independent Living in Chicago, and past Chair of the National Council on Disability Marca Bristo, insurance discrimination has been one of the single largest obstacles to full integration of people with disabilities in society. States have tried to address this matter with a patchwork of insurance mandate laws, virtually all of which have represented disability and methodology-specific approaches that do not come close to comprehensive reform. As Congress determines the structure of our updated health care system, it is important that obstacles to access, such as pre-existing conditions, as well as obstacles to coverage, such as the refusal of many insurance companies to cover “habilitative” care for children and adults with developmental disabilities, be considered and addressed.

4. Stop discrimination in the provision of care: Too often, people with disabilities are denied necessary — sometimes even life-saving — medical care because of assumptions that non-disabled people make about our quality of life. For many people, disability is still considered a fate worse than death instead of a part of the human experience. As a result, it has been disabled people who are pushed over the side first when resources become scarce. As recently as last year, a task force including doctors from the Centers for Disease Control and Prevention, the Department of Homeland Security and the Department of Health and Human Services issued guidelines stating that, in the event of a flu pandemic or similar emergency, people with intellectual disabilities as well as those with chronic health conditions may be excluded from care.

The eugenic impulse that views people with disabilities as “burdens on society” or “life unworthy of life” is still regrettably alive and well within our health care system. Just last week, Disability Rights Wisconsin, the state’s protection and advocacy system for people with disabilities, filed suit against the University of Wisconsin hospital as a result of their decision to withhold medication and basic nourishment from two patients with intellectual disabilities who had pneumonia. These individuals were not in a persistent vegetative state, were not dying and one even asked for food. The decision to refuse anti-biotics, nutrition and fluids for a treatable medical condition was made by hospital officials based on their determination of “quality of life” for the individuals in question. Health care reform must include non-discrimination protections that prevent these types of atrocities by health care providers.

These concerns are also relevant because of the likelihood that cost containment measures will be included in the health care reform initiative. Congress should avoid repeating the highly controversial Oregon Health Plan of the early 1990s, whose priority list of services ranked medical conditions in order to ration out care on the basis of a government determination of severity. Americans, with or without disabilities, deserve not to be pitted against each other in their efforts to obtain the health care services they need. With limited resources, Congress will need to make difficult decisions – yet discriminating against people with disabilities in the provision of health care services should never be considered an acceptable option.

One of the key critiques of the Disability Rights Movement has always been that, for many of us, the problems we face are not inevitably associated with whatever condition or diagnosis we may possess but are as much the result of societal discrimination in the form of infrastructures that were built without consideration that people like us might one day use them. Nowhere is this issue clearer than in health care. A health care reform agenda that includes these concerns can drastically improve the lives of many millions of Americans. One that simply reinforces the status quo will represent yet another wasted opportunity. It is no longer acceptable to doom a considerable portion of the American populace to more discrimination, more segregation and more disparities in access to meaningful health care.

Disability has often been called the great equalizer — our community reaches throughout every racial, religious, gender and political classification. Furthermore, though we are wide and varied, including both people with acquired disabilities, such as many of our brave men and women in uniform coming home from overseas, and others who were born with their disabilities, such as myself and the rest of the Autistic community, we can unite around our common dream for full participation, inclusion, integration and equality of opportunity for all. The disability message is a civil rights message. It is time for Congress and the President to hear our voices: Nothing About Us, Without Us!

Posted by BA Haller at 7:06 AM

Posted by: Patricia Williams | September 20, 2009

News and Commentary on Disability Issues

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

About the author and the website

I’m always eager for new stories, fresh ideas and useful links. Send me an email at: patricia@patriciaebauer.com

About the author:

Patricia E. Bauer is a journalist who has served as senior editor of the Los Angeles Times Sunday Magazine; special assistant to the publisher of the Washington Post; reporter and bureau chief at the Washington Post, and pundit on public affairs television in Los Angeles. Her articles have appeared in the Washington Post, the New York Times and many other publications.

Bauer is a former member of an Institutional Review Board (IRB) at UCLA, where she participated in the ethical review of federally funded medical research on human subjects, and has addressed national and regional conferences on the rights of patients and people with disabilities. During the Carter years, she worked in the White House press office as editor of the White House News Summary.

She is a member of the President’s Leadership Council at Dartmouth College, the Pacific Council on International Policy, and the board of trustees of the Riverview School in East Sandwich, Massachusetts.

Bauer and her husband are among the founders of the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia.

About the website:

PatriciaEBauer.com is a collection of news and commentary about disability issues drawn from news organizations around the United States and elsewhere.

As a journalist and the mother of a young adult with disabilities, I have often wondered why I was not able to find an online source for media coverage of issues relating to disability. Ultimately, I concluded that I needed to create such a resource myself.

I’ve attempted to create a crisply written website, updated regularly, that draws on a wide range of newspapers, magazines and other media resources to bring readers current reports on issues of interest to the disability community.

Each of the posts includes a summary of the original item, a short excerpt and a link that allows readers to access the original item in its entirety. The articles, editorials and columns displayed here are chosen to give the reader a representative sample of what is being carried in the media. They do not, unless noted, necessarily represent my personal opinions. Some of the websites may require registration.

How to use the website:

The newest items always appear at the top of the left column of the home page. As new items are added, the older items then are pushed down the page. If you want to browse in reverse chronological order, just keep scrolling down and then hit the link that says “earlier entries.” Recent comments are featured in the right column; each comment is also attached to the item that prompted the writer’s interest.

In each post, the portions of the text that are indented and highlighted in light blue are excerpts from the original item.

A couple of features on the site’s home page menu make it easy to find what you’re looking for:

NOT2BEMISSED is a collection of items that — you guessed it — shouldn’t be missed. Click there for the latest and greatest.

NEWS2USE will get you to items that may contain helpful hints, information sources, or things that can help you through your day.

There is also a search box (middle column) that lets you search by key word, and a list of categories (also middle column) that may help you find things.

And if all else fails, shoot me an email at: patricia@patriciaebauer.com.

Happy hunting!

Copyright 2007 Patricia E Bauer | Web Design by Southern Web Group
About the Site

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

Join journalist Patricia E. Bauer as she seeks to bring you the best information about what’s happening now and what it may mean for you and your loved ones.

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Not2BeMissed

* Judge blocks CA service cuts to disabled, elderly people
* Schwarzenegger halts evictions of disabled residents
* Op-ed: Planned community needed for adults with disabilities
* Apartment complex tells tenants with disabilities to clear out
* Newspaper faces controversy over ‘depressing’ amputee story

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Texas institutions

* Conviction in Texas ‘fight club’ case
* Disability advocates cry foul over Texas pact
* Editorial: Texas reforms are meaningless without accountability
* Guilty plea in Texas fight club case
* Hundreds of workers disciplined for mistreating disabled people

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School Restraints

* Education secretary asks states to develop, revise restraint plans
* Boy’s death points out lack of regulation of ‘psychoeducational’ schools
* Minnesota lawsuit: State hospital routinely restrained residents
* Advocates seek ban on school restraints, isolation
* AZ parents seek notification about school restraints

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Prenatal Diagnosis

* A world with no more Down syndrome?
* Article: ‘Will babies with Down syndrome slowly disappear?’
* Op-ed: ObamaCare will prompt abortions of babies with disabilities
* Letters: It’s time for public debate on prenatal testing
* UK spending millions to develop noninvasive prenatal test

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Obama Administration

* Blogger: Obama proposal will improve disability coverage
* Op-ed: ObamaCare will prompt abortions of babies with disabilities
* Committee dumps ‘death panel’ provision
* Palin’s ‘death panel’ remark draws fire
* Palin Facebook post: Administration health care plan is ‘evil’

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My Articles & Essays

* ‘Stand tall — together’
* Books: ‘Fasten Your Seatbelt’ offers info for siblings
* Hot topics: Curtis L. Decker on Texas institutions
* Down syndrome advocates lobby on Capitol Hill
* Hollywood performers unveil disability rights initiative
* Congress OKs Kennedy-Brownback disability diagnosis bill
* Questions, we get questions
* A note about language for my friends in the media
* ‘Tropic Thunder’: My views
* Just the facts … about ‘Tropic Thunder’

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FAQs

* Questions, we get questions
* Down syndrome in lay language
* Margaret’s guide to Down syndrome

Headlines

* Adults with autism struggle to find, keep work
* Judge blocks CA service cuts to disabled, elderly people
* Schwarzenegger halts evictions of disabled residents
* Op-ed: Planned community needed for adults with disabilities
* Deaf athletes increasingly compete in college sports
* Coaches collaborate, allow touchdown by player with DS
* Parents seek to create lifelong home for adult children with autism
* Op-ed: ‘It’s a mad, mad world’

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Posted by: Patricia Williams | September 19, 2009

TS Alliance Grassroots Advocates Score a Partial Victory!

TS ALLIANCE CONGRESSIONAL ACTION ALERT

Dear Friends,

TS Alliance Grassroots Advocates Score a Partial Victory!
On July 30, the House approved an appropriation of $8 million for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense (DoD). This amount was included in the House-approved version of the Defense Appropriations Act for fiscal year 2010. This $8 million is a direct result of TS Alliance supporters from around the country – like you – who contacted their members of Congress to let them know how important federally funded TSC research is to their families. As you may know, the TSCRP plays a vital role in furthering our understanding of TSC, identifying new and better treatments, and ultimately finding a cure.

But there’s more work to be done to make sure this year’s funding is fully approved, and we need your help again. Typically, the amount approved by the House is slightly reduced in the House-Senate conference committee deliberations on the final Defense Appropriations bill. We must do everything within our means to secure as much of the $8 million as possible in the final bill that will be signed into law.

You can easily contact your U.S. Representative and two U.S. Senators today via email to urge them to support the inclusion of the full $8 million in the final Defense Appropriations bill. In particular, if your member of Congress sits on the Defense Appropriations Subcommittee (see their names below), please do all you can to reach out to them – they are the committee members who ultimately determine the final amount for the TSCRP!

Email addresses for the Senate can be found at http://www.senate.gov/ and for the House at http://www.house.gov/writerep. To get you started, click the following links for sample emails to your U.S. Representative and your Senators.

House Appropriations Subcommittee on Defense

Chair: John P. Murtha (PA)
Norman D. Dicks (WA)
Peter J. Visclosky (IN)
James P. Moran (VA)
Marcy Kaptur (OH)
Allen Boyd (FL)
Steven R. Rothman (NJ)
Sanford D. Bishop, Jr. (GA)
Maurice D. Hinchey (NY)
Carolyn C. Kilpratrick (MI)
David R. Obey (WI), Ex Officio

Ranking Member: C.W. Bill Young (FL)
Rodney P. Frelinghuysen (NJ)
Todd Tiahrt (KS)
Jack Kingston (GA)
Kay Granger (TX)
Harold Rogers (KY)
Jerry Lewis (CA)

Senate Appropriations Subcommittee on Defense

Chair: Senator Daniel Inouye (HI)
Senator Robert C. Byrd (WV)
Senator Patrick Leahy (VT)
Senator Tom Harkin (IA)
Senator Byron Dorgan (ND)
Senator Richard Durbin (IL)
Senator Dianne Feinstein (CA)
Senator Barbara Mikulski (MD)
Senator Herb Kohl (WI)
Senator Patty Murray (WA)
Senator Arlen Specter (PA)

Ranking: Senator Thad Cochran (MS)
Senator Christopher Bond (MO)
Senator Mitch McConnell (KY)
Senator Richard Shelby (AL)
Senator Judd Gregg (NH)
Senator Kay Bailey Hutchison (TX)
Senator Robert F. Bennett (UT)
Senator Sam Brownback (KS)

We Need Your Voice . . .
Thanks to advocates like you, the TS Alliance continues to gain momentum, but we must also remain vigilant to make sure Congress funds the TSCRP fully. Please take a few minutes today to send an email requesting support.

Sincerely,

Kari Luther Carlson
President & CEO

Click here to subscribe to future news from the TS Alliance.
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Ted Kennedy Was Surrounded by Crying, Praying Family
Kennedy Praised as Most Influential Senator of Era
By MARK MOONEY and RUSSELL GOLDMAN
Aug. 26, 2009
Members of the Kennedy clan were summoned to the family’s compound in Hyannis Port Tuesday night to say tearful farewells to the man remembered today as an icon of American politics but known to them as Uncle Teddy.
Ted Kennedy
U.S. Senator Edward Kennedy, D-Mass., waits to speak at a ceremony to announce a federal grant for the University of Massachusetts-Lowell for nanotechnology manufacturing research in Lowell, Mass., Oct. 18, 2006.
(Brian Snyder/Reuters)

In keeping with a family tradition, they gathered around the bed of Sen. Ted Kennedy to pray.

The Rev. Patrick Tarrant, who was present with the family during those final hours, said he was impressed by Kennedy’s spirituality and faith in his last moments.

The priest said family members were crying and that in his final moments Kennedy was “a man of quiet prayer.”

“The truth is, he had expressed to his family that he did want to go,” Tarrant told WCVB, ABC News’ Boston affiliate. “He did want to go to heaven. He did want to die… He was ready to go.

“There was a certain amount peace — a lot of peace, actually — in the family get-together last night. I couldn’t help but think that the world doesn’t know that part of the senator at all,” Tarrant said.

He said Kennedy’s wife Vicki, his children and other family members were there.

“They were there and they were very prayerful and reverent and of course, crying,” Tarrant said. “Of course they were aware that the very sick, the sense of hearing is the last thing to go. So, whatever is said around the sick bed is always heard by the patient … and they were very well aware of it. They let him know how much he was loved and cared for and missed. It was quite an experience, for me.”

For more on the life and legacy of Sen. Ted Kennedy, watch “World News” at 6:30 p.m. ET, the ABC News Special “Remembering Ted Kennedy” at 10 p.m. ET and “Nightline” at 11:35 p.m. ET. Click here for ABC News’ full coverage.

The Roman Catholic priest, who presides at Our Lady of Victory Church and has ministered to the family for years, was called to Kennedy’s bedside when he took a “serious turn for the worse” between 9 and 10 p.m. Tuesday.

Kennedy died about 11:30 p.m. comforted by his family, he said.
Related
COMPLETE COVERAGE: The Life and Death of Sen. Ted Kennedy
Will There Ever Be Another Dynasty Like It?
Sen. Ted Kennedy Mourned Across the World

“I was there last night when he died and the whole family were praying. They’d been praying all day, and it was a wonderful experience for me. I don’t see it that often,” Tarrant said. “It’s commendable.”

The reverend said he had seen the Kennedy family’s religion at a death bed scene before and recalled how Ted Kennedy led a similar vigil at the bedside of his sister Eunice just two weeks ago. “I couldn’t help but think that the world doesn’t know that part of the senator at all,” he said.

Flags were lowered to half staff across the country as Americans mourned the death of Sen. Ted Kennedy, the last remaining member of the country’s most illustrious and ill-starred political dynasty.

Officials prepared for an elaborate and emotional farewell to Kennedy. He will lie in repose at the John F. Kennedy Presidential Library in Boston on Thursday and Friday, followed by a funeral at Our Lady of Perpetual Help Basilica, also in Boston, on Saturday. He will be buried at Arlington National Cemetary Saturday evening.

The death of the 77-year-old senator ended a year-long bout with brain cancer. Much of the country had been holding its breath as the senator battled for his life in recent days, too ill to return to Washington to join the debate over health care reform, one of Kennedy’s most passionate issues over the past 30 years.

Word of Kennedy’s death came early today, prompting an outpouring of praise lauding the brother of assassinated President John F. Kennedy and presidential contender and former Attorney General Robert F. Kennedy as one of the most influential politicians of the last century.

President Obama said in a statement that he and first lady Michelle Obama were “heartbroken” to learn of Kennedy’s death, calling the Democratic senator “our dear friend.”

“An important chapter in our history has come to an end. Our country has lost a great leader, who picked up the torch of his fallen brothers and became the greatest United States senator of our time,” Obama said in a written statement.

Obama interrupted his vacation at Martha’s Vineyard today to make a public statement in which he called Kennedy, “one of the most accomplished Americans ever to serve this democracy.”

The president said legislation Kennedy fought for affected millions of Americans, “including myself.”

In one of the many dramatic moments of his long career, Kennedy came out late in the bruising 2008 Democratic presidential primary and endorsed Obama over Sen. Hillary Clinton, D-N.Y., with a roaring speech that typified the last “liberal lion” of the Senate.

“The torch will be passed again to a new generation of Americans,” he declared, invoking echoes of the Kennedy family’s golden years of Camelot.
Strategizing With Obama Right Up to the End

A few hours after Kennedy died, the family issued a statement that said, “We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever.”

Kennedy had battled his brain cancer since first being diagnosed last May, remaining active up to his final days. He strategized with Obama and Connecticut Sen. Chris Dodd on the health care reform bill, and even pressing for a new law in Massachusetts that would allow the governor to quickly appoint a successor instead of waitiing for a special election.

Posted by: Patricia Williams | August 26, 2009

Senator Kennedy’s Brain Tumor

Senator Kennedy’s Brain Tumor: Dr. Raj Explains What It Means

This story was first published in May, 2008 after Senator Kennedy was diagnosed with a brain tumor. Senator Kennedy, age 77, died of malignant glioma on August 25, 2009.

This week Senator Edward M. Kennedy’s doctors announced he has a glioma, a type of brain tumor. Kennedy, 76, had a seizure on Saturday.

Glioma is a catchall term that includes many different types of tumor, including astrocytomas, oligodendrogliomas, and ependymomas, according to the American Cancer Society.

An estimated 21,810 people will be diagnosed with malignant tumors of the brain or spinal cord this year in the United States—1.3% of all cancers, responsible for 2.2% of cancer-related deaths. Gliomas make up about 40% of all brain tumors and can be benign or malignant. Kennedy’s, located in the left parietal lobe, is malignant. Gliomas are most likely to occur in those aged 75 to 84.

For insight into prognosis—and the significance of seizures and headaches in the diagnosis of brain turmors—I talked with Roshini Raj, MD, a Health magazine contributor and an assistant professor of medicine at the New York University Medical Center.

What is the significance of the glioma, and the malignancy?
About half of primary brain tumors [tumors that don’t spread from somewhere else in the body] are gliomas, and they can be very serious. Sometimes it’s a slow-growing or a low-grade tumor, but if it’s called malignant it means it’s an aggressive from of brain tumor.

Where is the parietal lobe?
It’s kind of in the top and middle. There’s the frontal lobe, which is in front where the hairline is, and there is the occipital lobe, which is in the back, where you’d put your hand on the back of your head. I would say this is in between.

How can this type of tumor affect bodily functions?
Tumors of this type can cause effects both by directly invading brain tissue and therefore destroying brain tissue, or by exerting pressure on parts of the brain. In his particular location, the parietal lobe, it could certainly affect memory, it can affect movement so it causes weakness on the right side, it can cause speech difficulties, and then, of course, seizures, which he has already had.

Is a seizure often the first sign of a brain tumor?
If someone who’s never had seizures before all of a sudden develops seizures—especially in this age group—you have to be worried about a brain tumor. However, I would say brain tumors are relatively rare compared to other types of cancer, such as colon cancer or prostate cancer.

What other symptoms are a sign of brain tumor?
We mentioned seizures, but another one is headaches. Not to make people panic—most headaches are just headaches; they are not anything like this—but if there is an unusual headache that’s in a new location, that’s very frequent, and that’s accompanied by things like vomiting or nausea or blurry vision, that could be a sign of something more serious, like a brain tumor.

It’s always important to see a doctor about a complaint like that. Maybe [the Senator’s diagnosis] can be a wake-up call for some people.

How will this be treated?
It really depends on the size and the stage of the tumor. You have to really look closely at the biopsy. Sometimes these are treated with surgery, but more often they are treated with radiation and chemotherapy.

Why are these so difficult to treat?
We know these types of tumors tend to be more aggressive, meaning they spread more easily, they grow more rapidly, and they are not as responsive to treatments such as radiation or chemotherapy. Brain tumors in general can be difficult to treat. Ideally you’d like to remove a tumor surgically, but you have to be very careful when you’re dealing with the brain in terms of how much can you remove and still preserve the functioning of the brain.

In addition, they have the ability to project and spread to other areas of the brain microscopically.

It’s been reported that Senator Kennedy could have stage 3 or 4 tumor. What does this mean?
Basically once its stage 4, that means that you’re not trying to cure the tumor, it’s not going to be possible to do that. You’re just trying to contain it and prevent any further complication, possibly shrink it, but you’re not going to be able to get rid of it.

What sort of prognosis is associated with this type of tumor?
With these kind of tumors, it’s not very good, especially stage 4. About 1 in 5 people with the most aggressive type of glioma, glioblastoma multiforme, survive for more than two years, according to the Cancer Research UK.

For more information about brain tumors, read 3 Headaches That Require Emergency Attention, check out our Health A-Z Library, or visit these specific sites: Massachusetts General Hospital; National Cancer Institute.

By Theresa Tamkins
(PHOTO: NANCY OSTERTAG/GETTY IMAGES)

American Brain Tumor Association Statement on the Death of U.S. Senator Edward M. Kennedy

DES PLAINES, Ill., Aug. 26 /PRNewswire-USNewswire/ — The following is a statement by Elizabeth Wilson, Executive Director, American Brain Tumor Association on the death of U.S. Senator Edward M. Kennedy:

“Senator Kennedy’s brain tumor diagnosis just over a year ago brought international attention to this dreadful and devastating disease. He will be remembered as a tireless health care advocate who displayed courage and strength in his final battle against an unrelenting illness.

“The American Brain Tumor Association extends its sincere condolences to Mrs. Kennedy and the Kennedy family. In Senator Kennedy’s memory, and on behalf of all those living with a brain tumor, we remain committed to pursuing increased funding of brain tumor research and advocating for the best possible brain tumor treatment and patient care.”

Founded in Chicago in 1973, the American Brain Tumor Association was the first national nonprofit organization dedicated solely to brain tumors. The American Brain Tumor Association is a recognized leader in brain tumor research and patient information, education and support services. Last year, the ABTA funded more than $2.7 million in brain tumor research. Visit www.abta.org or call 1-800-886-2282 for more information.

SOURCE American Brain Tumor Association

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