ALS Is A Stress Test For Healthcare Delivery

Every day a healthcare provider will put a cardiac patient on a treadmill and push the patient toward some limits just to reveal whatever weaknesses may be lurking in the cardiovascular system.

Turnabout is fair play.

Let's put U.S. healthcare delivery on a treadmill. We'll program the treadmill to move at a really fast speed. We'll put a steep uphill climb. The treadmill now represents a stress test for U.S. healthcare delivery.

Patients with ALS and their caregivers present this stress test to U.S. healthcare delivery every day, and the weaknesses are clear and frustrating and wasteful. Our legislators should be talking to PALS and CALS (even though they don't jump up and down and rant and rave at meetings). They have insights into the system that have nothing to do with the controversies of funding. They know where there are wasteful processes that damage their health and the health of their caregivers. These wasteful processes also waste a lot of money regardless of who is paying the bills.

ALS moves at a rapid clip with physical changes happening much faster than healthcare is delivered. Many caregivers feel like they're always throwing the ball five yards behind the receiver... just because healthcare delivery does not always deliver promptly or accurately.

Ask a person with ALS about the medical equipment errors and outrageous prices and lack of focused selection. If the dealer has a Model X in inventory, will the patient get a Model X rather than the more appropriate Model Y? Can the Model Y arrive before the patient is ready for Model Z? Medicare buys a lot of inappropriate equipment.

Ask a person with ALS about trying to get an appointment with a specialist such as a pulmonologist. Will the scheduling clerks insist on the six-week lead time for a new patient even though the patient's breathing will be significantly compromised in six weeks? Will the scheduling clerk even ask the caregiver what might be convenient?

Ask a person with ALS about how the hospital that inserts a feeding tube doesn't take fifteen minutes to show a family how to use it as a part of the procedure but rather has a home-healthcare agency set up a training appointment in four days. So much for good nutrition for four more days.

Ask a person with ALS about how frustrating it is to fill out clipboards with redundant forms for each new specialist. Medical science has proven better outcomes for people with ALS with a multidisciplinary team approach; however, there is no such thing as teamwork in medical records or paperwork in our system.

If we want to reduce expensive waste and improve quality in the U.S. healthcare delivery system, we should be paying attention to the insights that come from the ALS stress test. We have a healthcare delivery system that likes to move at its own pace and do things they way it does things. When ALS tries to speed up the pace and gives the system a steep climb, our existing healthcare delivery system can't handle the treadmill. Ask someone with ALS or a caregiver.

Oh, Canada!

ALS Canada (@alscanada on twitter) is in a race for Canadian twitter notoriety (and there are funds to be awarded to the winner).

Please click on this link for Toronto Twestival and vote for @alscanada .

If you tweet, @alscanada is a treat to follow. If you don't tweet, following @alscanada is a good place to start.

This is getting national media attention in Canada. It's an easy way to boost a creative ALS organization and put ALS in the spotlight. You don't have to be Canadian to vote, eh. Shoot, you don't have to tweet to vote.

Can You Find ALS?

Please use the link below and try to find ALS --

http://apps.who.int/classifications/apps/icd/icd10online/

Did you find it?

Do you think that the medical coders who do physicians' patient billing records find it (remember, the doc probably scrawled ALS on the paperwork)?

Do you think that the coders who enter death certificate data find it (who knows what the doc scrawled on the death certificate)?

Who Answered Our Questions Before Google?

Interesting tidbit that my friend Google found... unfortunately not soon enough for the comments period window... but nonetheless it's interesting.

http://edocket.access.gpo.gov/2009/E9-12397.htm

[Federal Register: May 28, 2009 (Volume 74, Number 101)]
[Notices]
[Page 25552-25553]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr28my09-68]
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
[60Day-0923-09BR]

Proposed Data Collections Submitted for Public Comment and
Recommendations
In compliance with the requirement of Section 3506(c)(2)(A) of the
Paperwork Reduction Act of 1995 for opportunity for public comment on
proposed data collection projects, the Centers for Disease Control and
Prevention (CDC) will publish periodic summaries of proposed projects.
To request more information on the proposed projects or to obtain a
copy of the data collection plans and instruments, call 404-639-5960
and send comments to Maryam I. Daneshvar, CDC Acting Reports Clearance
Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333 or send an e-mail
to omb@cdc.gov.
Comments are invited on: (a) Whether the proposed collection of
information is necessary for the proper performance of the functions of
the agency, including whether the information shall have practical
utility; (b) the accuracy of the agency's estimate of the burden of the
proposed collection of information; (c) ways to enhance the quality,
utility, and clarity of the information to be collected; and (d) ways
to minimize the burden of the collection of information on respondents,
including through the use of automated collection techniques or other
forms of information technology. Written comments should be received
within 60 days of this notice.
Proposed Project
Registration of individuals with Amyotrophic Lateral Sclerosis
(ALS) in the National ALS Registry--New--Agency for Toxic Substances
and Disease Registry (ATSDR), Coordinating
[[Page 25553]]
Center for Environmental Health and Injury Prevention (CCEHIP), Centers
for Disease Control and Prevention (CDC).
Background and Brief Description
On October 10, 2008, President Bush signed S. 1382: ALS Registry
Act which amended the Public Health Service Act to provide for the
establishment of an Amyotrophic Lateral Sclerosis (ALS) Registry. The
activities described are part of the effort to create the National ALS
Registry. The purpose of the registry is to: (1) Better describe the
incidence and prevalence of ALS in the United States; (2) examine
appropriate factors, such as environmental and occupational, that might
be associated with the disease; (3) better outline key demographic
factors (such as age, race or ethnicity, gender, and family history)
associated with the disease; and (4) better examine the connection
between ALS and other motor neuron disorders that can be confused with
ALS, misdiagnosed as ALS, and in some cases progress to ALS. The
registry will collect personal health information that may provide a
basis for further scientific studies of potential risks for developing
ALS.
During a workshop held by The Agency for Toxic Substances and
Disease Registry (ATSDR) in March 2006 to discuss surveillance of
selected autoimmune and neurological diseases, it was decided to
develop a proposal to build on work that had already been done and
coordinate existing datasets to create a larger database, rather than
to start from scratch with medical records review and physician
reporting. Four pilot projects were funded to evaluate the accuracy and
reliability of existing data from the Center for Medicare and Medicaid
Services (CMS) and various datasets from the Veterans Administration.
Preliminary results indicate that additional ways to identify cases of
ALS will be necessary to increase completeness of the registry.
Therefore, ATSDR developed a Web site where individuals will register
and will also have the opportunity to provide additional information on
such things as occupation, military service, and family history of ALS,
which is not available in existing records.
The registration portion of the data collection will be limited to
information that can be used to identify an individual to assure that
there are not duplicate records for an individual. Avoiding duplication
of registrants due to obtaining records from multiple sources is
imperative to get accurate estimates of incidence and prevalence, as
well as accurate information on demographic characteristics of the
cases of ALS.
In addition to questions required for registration, there will be a
series of short surveys to collect information on such things as
military history, occupations, and family history that would not likely
be available from other sources.
This project proposes to collect information on individuals with
ALS which can be combined with information obtained from existing
sources of information. This combined data will become the National ALS
Registry and will be used to provide more accurate estimates of the
incidence and prevalence of disease as well as the demographic
characteristics of the cases. Information obtained from the surveys
will be used to better characterize potential risk factors for ALS
which will lead to further in-depth studies.
The existence of the Web site will be advertised by ATSDR and
advocacy groups such as the Amyotrophic Lateral Sclerosis Association
(ALSA) and the Muscular Dystrophy Association (MDA).
There will be approximately 30,000 individuals living with ALS when
the National ALS Registry is initiated, and it is estimated that
approximately 25% of those individuals will also participate. In
addition, approximately 6,000 people are diagnosed with ALS each year
and we expect about one-third of them will participate in the registry.
Because an advantage to registration is participating in the surveys,
we expect the one time surveys, and the twice yearly survey
participation rate will be 50%.
There are no costs to the respondents other than their time.
Estimated Annualized Burden Hours
----------------------------------------------------------------------------------------------------------------
Number of Average burden
Data collection instruments/respondents Number of responses per per response Total burden
respondents respondent (in hours) (in hours)
----------------------------------------------------------------------------------------------------------------
Validation questions (Screener) for suspected 6,000 1 2/60 200
ALS cases......................................
Registration Form of ALS cases.................. 4,667 1 7/60 544
Cases of ALS completing 1-time surveys.......... 2,334 6 5/60 1167
Cases of ALS completing twice yearly surveys.... 2,334 2 5/60 389
---------------------------------------------------------------
Total........................................... .............. .............. .............. 2300
----------------------------------------------------------------------------------------------------------------
Dated: May 20, 2009.
Maryam I. Daneshvar,
Acting Reports Clearance Officer, Centers for Disease Control and
Prevention.
[FR Doc. E9-12397 Filed 5-27-09; 8:45 am]
____________

'LEAVE THEM LAUGHING' DEMO - A Musical Comedy about ALS

Ninety riveting minutes of songs about life, and quips about death, from the wheelchair of a woman who vows to exit the stage with a smile on her beautiful face.
Once a nationally-known performer of ballads, skits and self-parody, now fated by Lou Gehrig’s Disease to perish within months, the remarkable Carla Zilbersmith was diagnosed in 2007 and given less than four years to live. She will leave a teen-aged son, a few fans and students who adore her, and this 90-minute pre-mortem retrospective of a life lived fully, but far too fast.
On stage in actual and dramatized flashbacks to her giddy days as a comedienne and chanteuse, and on camera in the unashamed current reality of her condition, "Leave 'Em Laughing" tells Carla’s own glad, sad story in her own voice through diary entries, travelogues, interviews and skits. Films of her last brave travels to Australia, Britain and Mexico demonstrate the ferocity of her intention to suck the last molecules of pleasure from her life.
“A journalist asked me what I wanted to do before I died,” Carla says, “and I quite naturally answered: Johnny Depp.”
She is confident that a musical comedy about the nearness of death will be a unique and compelling vehicle to engage an audience with a subject that might otherwise be shunned for its graphic toll of suffering and pain.
But beyond the inexorable progress of the disease is the inescapable truth that all of us, sooner or later, will have to confront our own individual demise. No one could serve as a more inspiring forerunner along that path than Carla Zilbersmith, who faces her own extinction with wit, wisdom, courage, music and love. That she will die before her audience, her son, her friends, and her parents, there is little doubt. That they need grieve for her suffering while she still is living, there is no reason. Later, she says, there will be too much time for tears and sorrow.
We see a universal appeal for this unique portrayal of a woman’s capacity for humor in the face of tragedy. Carla’s outrageous and colorful sense of humor remains intact, even as her physical body weakens; who else would have the words Out of Order tattooed on her feet!
As an Academy Award-winning director, no one knows the power and impact of the motion picture better than John Zaritsky.
ALS imposes a cruel and literal deadline; Carla has up to two years to live. Our goal — and hers — is to bring the film to the screen for her to see.
We plan a 90-minute version for theatrical and festival release and a 60-minute documentary for international and domestic broadcast.

Download our Press Kit (PDF)

Magic Flute Films Demo