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BC-Reeve-paralysis-survy

To: NATIONAL EDITORS

Contact: Jennifer Dickson of the Christopher and Dana Reeve Foundation,

+1-202-466-9633, jennifer@turnerstrategies.com

WASHINGTON, April 21 /PRNewswire-USNewswire/ -- A survey of over 33,000

households released today shows that 40 percent more Americans live with

paralysis and over five times the number of Americans live with spinal cord

injury than previously estimated. Specifically, the survey shows that 1.275

million have had a spinal cord injury and over 5.6 million Americans live with

some form of paralysis. The highest previous estimates were 250,000 and

roughly four million, respectively.

"That means one in 50 Americans is living with some form of paralysis,

whether caused by disease, spinal cord injury or neurological damage," said

Peter T. Wilderotter, President and CEO of the Christopher & Dana Reeve

Foundation. "Someone you know is living with paralysis -- a family member, a

friend or a work colleague."

Major Findings

The study was initiated by the Christopher & Dana Reeve Foundation and

conducted by the University of New Mexico's Center for Development and

Disability. More than 30 experts from 14 leading universities and medical

centers and the U.S. Centers for Disease Control and Prevention set the

parameters for the survey. The development of the survey, acquisition and

analysis of the data took over three years.

"This is the first population-based survey to measure the national

prevalence of paralysis," said Anthony Cahill, Ph.D., principal investigator

for the study and Director of the Division of Disability and Health Policy in

the Center for Development and Disability at the University of New Mexico's

School of Medicine. "The enormous data set offers a wealth of information

about this population."

-- Paralysis is dramatically more widespread than previously thought.

Approximately 1.9 percent of the U.S. population, or 5,596,000 people

reported they were living with some form of paralysis, defined by the

study as a central nervous system disorder resulting in difficulty or

inability to move the upper or lower extremities. This is about 40

percent more Americans living with paralysis than previously estimated

( 7/8four million).

-- Spinal cord injury is also more prevalent than previously estimated.

Data indicate that 1,275,000 people in the United States are living

with spinal cord injury -- more than five times the number of

Americans previously estimated in 2008 (255,702).

-- We are more certain about causes of paralysis. The leading cause of

paralysis was stroke (29 percent), followed by spinal cord injury (23

percent) and multiple sclerosis (17 percent).

-- Paralysis appears to be disproportionately distributed among some

minority communities -- such as African Americans and Native Americans

-- but not all. Hispanics who are living with paralysis represent

approximately the same percentage as those who report being Hispanic

in the United States census.

-- People living with paralysis have households with lower incomes.

Household income for those with paralysis is heavily skewed towards

lower-income brackets and is significantly lower than household income

for the country as a whole. Roughly 25 percent of households with a

person who is paralyzed earn less than $10,000 per year, compared with

only seven percent of households in the general population.

Public Health Implications

"This study reveals important findings about the prevalence of paralysis

and spinal cord injury, but we must also remember that behind each of these

statistics are real people, who along with the rest of their families are

facing urgent needs," says Dr. Edwin Trevathan, Director of the CDC's National

Center on Birth Defects and Developmental Disabilities. "This is a crucial

first step to providing appropriate public health supports for this community

in understanding how many people live with the condition, who they are, and

what they need. At the CDC it is only when we apply our knowledge to improve

the lives of people from before birth and throughout their lives that we can

achieve our long-term objectives."

Findings about socio-economic status are particularly concerning. Basic

supports are available -- such as ramps and in-home caregivers -- that allow

those living with spinal cord injury and paralysis to continue to work and to

improve their quality of life. In addition, rehabilitation therapies and

medical interventions that restore functionality in some patients exist. Yet

these therapies and quality of life supports are all-too-often unavailable,

often due to lack of adequate health insurance or limited geographic access.

"The healthcare system is often penny-wise and pound-foolish," said Joseph

Canose, Vice President for Quality of Life at the Reeve Foundation. Canose

directed the project on behalf of the Reeve Foundation. "For example, many

health insurance companies will not pay for a $400 wheel chair seat cushion,

but they will pay $75,000 to $100,000 to treat the pressure sores caused by

the wrong cushion. The more we can do to help people live independently -- to

get an education, to work and to live fulfilling lives -- the more our entire

society benefits."

"Seventeen years after the accident that led to my paralysis, my life is

full, personally and professionally. I have a wonderful family and a

successful career," said Alan T. Brown, a Florida business executive. "Yet I

depend on help with nearly every aspect of daily life. Recently my long-time

health insurance carrier discontinued my medical coverage -- meaning that the

in-home care necessary every day is now limited to 20 days a year."

Methodology

Researchers collected and analyzed data from more than 33,000 randomly

sampled households with a telephone survey in the United States to document

the prevalence of paralysis, including spinal cord injury. With the exception

of annual surveys sponsored by the federal government (such as the Behavioral

Risk Factor Surveillance Survey (BRFSS) or the National Health Interview

Survey), this is the largest population-based sample of any disability ever

conducted of which we are aware.

The study comprised four components:

-- Assessment of existing surveys, registries, and data collection

efforts. A team from the University of Kansas conducted this

assessment to determine how paralysis was defined by different

organizations and surveys, as well as how data about paralysis had

previously been collected. These findings were published in the

peer-reviewed publication "Disability and Health Journal" in July

2008.

-- A "consensus conference." This conference, held in Atlanta in 2006,

convened more than 30 experts in statistics and paralysis to develop a

functional definition of paralysis that could be used in a national

survey and to draft a survey instrument for it.

-- The development and testing of a pilot instrument. Researchers used

cognitive testing to create the final instrument -- a process that

helps to ensure that questions on a newly-developed survey are clear

to respondents and mean the same thing as they do to the survey

creators. They then administered the instrument by phone to more than

100 people, who then participated in follow-up interviews or focus

groups about their understanding of the questions. Next, two waves of

1,000 people each participated in the survey (by phone). These

activities led to four revisions of the instrument.

-- Administration of the final survey. The final survey was administered

by ICR International, a nationally-recognized research and polling

firm, during 26 weeks in 2008. ICR conducted telephone interviews

nationally between May and August 2008 with adults in 33,348

households in the United States. Since African Americans and

Hispanics are usually under-represented in random national surveys,

these groups were oversampled.

Conclusion

"If Christopher Reeve were alive today, he'd say, 'I told you so -- now

get to work,'" concluded Wilderotter. In response, the foundation plans to

launch a major campaign, and has laid out an ambitious public policy agenda

(which is outlined in the One Degree of Separation report.)

About the Reeve Foundation

The Christopher & Dana Reeve Foundation is dedicated to curing spinal cord

injury by funding innovative research, and improving the quality of life for

people living with paralysis through grants, information and advocacy. For

more information, and to review the entire list of Quality of Life grant

recipients, please visit our website at http://www.ChristopherReeve.org or call

800-225-0292.

Contact us for more information, advance interviews, embargoed copy of the

survey, broadcast-quality b-roll and/or high resolution photos: Jennifer

Dickson, Suzanne Turner 202-466-9633.

FACT SHEET: Why Didn't We Know How May People Were Paralyzed Before?

Three factors distinguish this study from those previously undertaken

about this issue:

-- It surveyed a much larger population, and used a sophisticated

sampling strategy that randomly surveyed people across the country,

rather than in only one state or sub-state regions.

-- It did not use clinical data (e.g., diagnoses that were given at one

or more hospitals during a specific time period) for counting people

with paralysis. While clinical data is an excellent source of

information about the specific health issues faced by people who are

paralyzed, it is generally not a good source of prevalence data

because sometimes people with paralysis-related injuries seek care

from health care providers for secondary health conditions that may

result from -- but occurred long after -- their injury, meaning that

they would not necessarily be diagnosed or, in turn, counted as those

living with paralysis.

-- It used a consistent definition of paralysis based on the definition

of disabilities used by the World Health Organization (WHO), which

uses function, rather than impairment (the medical model), as its

frame.

What Do We Do Now?

The Reeve Foundation released a report titled "One Degree of Separation"

with the new data. The report outlines those things necessary for increased

quality of life for people living with paralysis, as well as the action steps

necessary to ensure these supports and treatments are widely available.

Insurance coverage and access to health care generally is only one set of

barriers that confront people living with paralysis. Others include:

-- Employment: Scattershot or lackluster adherence of the Americans with

Disabilities Act (ADA) has left many workplaces ill-equipped to handle

the employment of people with paralysis, leaving them with fewer job

opportunities.

-- Caregiving: The staggering number of family caregivers, supporting a

population of 1.3 million individuals with spinal cord injury, need

respite and better support systems.

-- Limited number of personal care attendants: More and better trained

and paid attendants are needed to provide morning and evening care to

people with spinal cord injuries to allow many to return to work.

-- Growing population with disabilities: The number of people living

with spinal cord injury and paralysis is growing, living longer, and

facing health-related and quality-of-life issues as they age.

"One Degree of Separation" also includes detailed information on specific

reforms necessary to provide people living with paralysis the supports they

need to live healthy, productive lives. These include:

-- Implement The Christopher And Dana Reeve Paralysis Act (CDRPA)

The CDRPA, the first national public health bill to directly address

paralysis, was signed into law by President Obama on March 30, 2009. Congress

must now fund this legislation and work with administration officials to

implement it by:

-- Establishing the Christopher Reeve Paralysis Consortia at the National

Institutes of Health (NIH) to promote collaboration among scientists

doing similar work in multiple fields to enrich understanding and

speed up the discovery of better interventions and cures;

-- Expanding rehabilitation research, including clinical trials, to

improve daily function for people with paralysis, prevent secondary

complications, and develop better assistive technology;

-- Developing and expanding programs at the Centers for Disease Control &

Prevention (CDC), such as grants to non-profit health and disability

organizations for educating the public about paralysis, improving

access to services, integrating life with paralysis into society, and

coordinating services within each state.

-- Improve The Quality Of Life For People With Disabilities By Reforming

Health Care

Nearly 47 million Americans are currently underinsured or not insured, 20

percent of whom are people with disabilities. People with disabilities also

tend to earn below-average incomes but incur significantly more health care

expenses than Americans without disabilities.

-- According to the U.S. Census Bureau, Current Population Survey, 2008

Annual Social and Economic Supplement, 27.1% of the U.S. population's

annual household income is $25,000 or less. The paralysis population

survey indicates 59.2% of annual household incomes for people living

with paralysis is $25,000 or less, and 62.7% of the annual household

incomes for people with spinal cord injuries is $25,000 or less.

As the debate around health care reform heats up, there are six specific

areas that will be important to focus on to ensure that people with

disabilities, including those with paralysis, are guaranteed adequate coverage

and support:

-- Develop and provide resources for streamlined, centralized, and

coordinated health care systems. Medical services for people with

disabilities and chronic conditions (who often experience a unique

confluence of secondary and complex conditions) must be coordinated

across health care providers, functions, activities, locations, and

time to increase effectiveness and efficiency, as well as to prevent

duplication, misdiagnoses, and unnecessary hospitalization and costly

interventions.

-- Lift or significantly raise caps on lifetime insurance benefits. Many

insurance plans now cap their lifetime benefits at $2 million and/or

do not index them for inflation. Given the exorbitant health care

costs that confront people living with paralysis and their families --

which often force them to turn to Medicare or Medicaid to pay them --

benefit lifetime caps should be raised to at least $10 million and

indexed to inflation.

-- Remove the two-year waiting period for Medicare coverage. Unlike

older Americans, who typically enroll and become eligible for coverage

within months of turning age 65, disabled beneficiaries must wait two

years before their coverage takes effect. A 2004 Commonwealth Fund

study that the Reeve Foundation co-sponsored found that people with

catastrophic injuries, who can least afford waiting for treatment,

either forgo medications and other medical treatments during this

waiting period or go broke trying to pay for their own coverage.

-- Remove the current in-the-home rule. Medicare currently pays for the

cost of power wheelchairs only if people with disabilities can prove

that their chairs are needed in their homes. Many people with

paralysis can achieve mobility using a manual wheelchair or a walker

at home, but need power for mobility outside the home. Without access

to power wheelchairs, they are unable to leave their homes at all for

work or other activities.

-- Increase insurance coverage for outpatient physical therapy. Insurance

policies currently do not differentiate between severe injuries --

such as spinal cord injuries -- and injuries such as sprained ankles.

As a result, the number of physical therapy sessions insurance

provides on an annual basis is the same for both. More attention

needs to be paid to the specific types of injuries so that treatment

plans are developed accordingly and, in turn, insurance coverage is

tailored to them, rather than using a blanket approach to injuries

that can vary widely in how they are treated.

-- Support family caregivers. While Congress recognized the importance

of respite care for family caregivers by passing the Lifespan Respite

Care Act in 2006 (which authorizes $289 million in competitive grant

funding to states to train volunteers and provide other services to an

estimated 50 million family caregivers nationwide), it must follow

through and fully fund these programs.

-- Provide Better Educational Opportunities To Americans With

Disabilities

Provide full federal funding for the Individuals with Disabilities

Education Act (IDEA), rather than forcing states and local school districts to

shoulder the burden as they do now.

-- Support universal screening and early intervention such as

scientifically-based literacy instruction and instruction on the use

of adaptive and educational software for children with disabilities.

-- Expand access to college opportunities for high school graduates with

disabilities by making college more affordable, ensuring campus

accessibility, offering special loans, and improving distance-learning

technology.

-- Authorize a comprehensive study of students with disabilities and

issues relating to transition to work and higher education.

CONTACT: Jennifer Dickson

jennifer@turnerstrategies.com

(202) 466-9633

SOURCE Christopher and Dana Reeve Foundation