Internet Laryngectomee Support
Study Suggests That Majority Of Larys
Do Not Have Access To Support Groups, Or Are Not In Touch
Preliminary data suggest that the majority of laryngectomees in the U.S. do
not have continuing contact with laryngectomee support groups. While the study
has not been carried out using standards of scientific research in terms of
random sampling, the results probably accurate reflect a general pattern for the
U.S. A larger sampling is planned.
Like all research, the study is based on assumptions. One of these
assumptions is that the often sited figure of 50,000 laryngectomees in the U.S.
is reasonably accurate. That figure was used to determine the approximate
number of laryngectomees likely to be in a community of a certain size. Another
assumption is that larys are likely to be fairly evenly distributed throughout
the U.S. Other than known differences in smoking patterns, such as that fewer
people who live in Utah smoke than the national average, the estimates should be
reasonable close. This factor would also contribute to the accuracy of the
estimated number of larys in a given community.
Additionally, the only clubs surveyed were those which are affiliates of
the International Association of Laryngectomees and listed in their directory of
clubs, and only those clubs were surveyed which had contact persons with e-mail
addresses and who were willing to respond to the survey by providing the data
requested. Additionally, we know that there are laryngectomee support groups in
the U.S. which are not affiliated with the IAL. So these clubs were not part of
the survey. Additional research would be necessary to confirm the identified
trends as generally accurate for the entire U.S.
The survey was initially undertaken to determine the percentage of
individual members of local laryngectomee support groups who get the mailed
version of the "IAL News." But for comparison purposes the size of the
community represented by the club was determined, and the number of members on
club rosters was compared to an estimate of the number of laryngectomees likely
to reside in a community of that size.
One obvious conclusion from the data is that there are significant
differences among the clubs in terms of the items surveyed. There are wide
disparities in the percentages of individual club members who receive the IAL
News, from a low of less than 10%, to a high of 100%. In terms of how many
laryngectomees estimated to live in a community are on club rosters, the number
ranges from a low of under 5%, to 100%.
Many clubs are significantly smaller than might be anticipated for their
geographical areas. The data suggest that some clubs are better at (1)
identifying new laryngectomees in their communities (2) keeping in touch with
them over time. It would appear that some clubs apparently only maintain
contact with laryngectomees who are faithful in attending meetings. This is
typically a very small percentage of laryngectomees in a community. Local
conditions, such as whether the club has a newsletter and whether it is printed,
mailed and paid for by local ACS units, for example, may help determine the
number of members on club rosters. The data also suggest that some clubs put
every laryngectomee they can identify on their mailing lists and leave them on
until requested to remove the name; while other clubs apparently insist that
individuals attend meetings or specifically request to receive mailings to get
on club rosters or mailing lists.
An additional potential area of confusion is who is listed on club
rosters. Are all laryngectomees identified as living in the geographical area
served listed, or only those who pay club dues?
A discussion in WebWhispers some time ago focused on the idea of a
"Laryngectomee Bill of Rights". Among the ideas suggested included the "right"
of every laryngectomee to be put in touch with fully rehabilitated
laryngectomees as early as possible. And another was that every laryngectomee
benefits from the opportunity for continued contact with fellow laryngectomees.
At a time when the number of support groups is declining and membership is down,
it may be especially important for local clubs to rethink their policies and
strategies for identifying every laryngectomee in their community, and ways to
keep in touch with each of them over time. Unfortunately, the size of some
clubs and stable or declining numbers is likely to see that club fold when the
leadership dies or is unable to continue. Additionally, actions may be called
for which assist interested individuals and groups to form laryngectomee support
groups in the many communities which currently do not have them.
Florida Study Contains Some Surprises
A study undertaken at the University of Florida Medical School and reported
in the May issue of the Journal of Clinical Oncology contained a
few unexpected results--results which have been contradicted by other studies.
The study was conducted between 1983 and 1998. It followed 173 patients who had
undergone complete laryngectomy and postoperative radiation treatments. The
focus of the study was initial choice of alaryngeal speech option, and the
longer term continuance with it. The results are seen in the following table:
Of surprise to some is the initial figure of 27% for TEP speech. Most would
have predicted a higher number since TEP appears to be the most recommended type
of alaryngeal speech by SLPs (Speech/Language Pathologists) and ENTs (ear, nose
and throat specialist medical doctors).
Even more surprising is the drop off over time of TEP speech use to 19%.
Last month another article reported on the results of a long term study on the
use of the major speech options a number of reasons why individuals abandon TEP
speech. Chronic leaking problems and other tissue health problems are prominent
reasons for abandoning the TEP, as well as cost considerations and “hassle”.
Another surprise to some is the high initial use of the artificial larynx,
and the subsequent increase in its use over time. Obviously, many who decide to
give up TEP speech chose to return to using the artificial larynx, so this helps
explain the increase to 57% five years and more out from the laryngectomy.
While it may come as less of a surprise, the low initial use of traditional
esophageal speech may be discouraging to its advocates, but the tripling of its
use to 3% over time may be seen as a positive trend. Traditional esophageal
speech is considered by many to be more difficult to attain than the other two
alternatives, but the increase may be indicative of those who manage to acquire
it over time.
Certainly another conclusion which can be drawn from the study would be
that, despite the apparent popularity of TEP speech at the moment, the
artificial larynx should not be viewed as an obsolete alaryngeal speech option
since it is obviously continuing to be popular among those who really count--the
Secondhand Smoke In
A number of articles relating to secondhand smoke (also referred to as
"passive" or "involuntary smoking") have made the national news media in recent
days and weeks.
Employers Convicted and Jailed over Second-hand Smoke Death
Two Italian bank managers have been convicted of criminal manslaughter in
the death of a female bank employee who died of a fatal asthma attack due to
secondhand tobacco smoke. They were fined 50,000 Euro dollars and sentenced to
jail. The court decision sets a precedent for civil lawsuits for wrongful
death related to secondhand smoke in the workplace.
The victim, a 35 year old married woman with a 10 year old child, had asked
to be relocated out of her working situation and she had attached medical
certificates to her requests documenting the medical consequences to her of
secondhand smoke. The requests, however, were ignored.
Law Professor John Banzhaf, Executive Director of Action on Smoking and
Health, said that "This is apparently the first situation in which people were
held to be criminally liable for causing the death of someone by subjecting them
to secondhand tobacco smoke." The precedent is likely to be sited in other
countries as legal precedent in further lawsuits.
New York Court Prevents Mother from Smoking around Child
A Supreme Court in New York has ordered a mother to refrain from
smoking in the presence of her son during visitations. While this is not the
first time that a court has upheld the right to breathe smoke-free air, it is
unusual since her son, Nicholas, has no medical condition known to be made worse
by smoke. The Supreme Court Justice cited evidence of the harmful effects of
secondhand smoke and found that exposure to it is not in the best interests of
Some have speculated that if current trends continue smoking in the
presence of children may eventually be ruled to be a form of child abuse or
Megastudy Confirms Secondhand Smoke Causes Cancers
Over 50 separate research studies on the impact of secondhand smoke
exposure were combined and analyzed in a report issued in June. The report,
prepared by an extension of the World Health Organization, reported that
billions of people in the world exposed to secondhand smoke have an increased
risk of developing cancers of the lungs, stomach, liver, kidney, uterine, cervix
and to myeloid leukemia (a type of cancer of the blood). Secondhand smoke is
according to the research, linked to prostate or breast cancer.
Dr. Jonathan Samet, of the International Agency for Research on Cancer
(WHO) which presented the report, said scientists are only now beginning to see
the full picture of what happens when a generation begins to smoke at an early
age and continues to smoke throughout their adult lives. "We're still learning
about just how damaging cigarette smoking is. We found that cancers beyond
those that we had previously listed as caused by smoking can now be added to the
list," he said.
Fruits, Cereals, Dairy Products Linked
To Lower Oral Cancer Rates
In addition to lung and other
cancers, laryngectomees are also at greater risk for developing oral cancers
than the general population. Research conducted in Greece, where the rate for
oral cancer is relatively low, and reported in the June issue of Cancer,
finds that lower oral cancer risks exist for those individuals who consume
higher percentages of fruits, cereals, dairy products and olive oil. Higher
consumption of meat and meat products is linked to a higher risk for oral
cancers. Increased consumption of riboflavin (vitamin B2) and magnesium were
also linked with lower oral cancer rates.
For those of you who really love
to plan ahead, you will want to mark your calendars for Disneyland in Southern
California for the 2004 IAL Annual Meeting and Voice Institute. As many will
recall, Atlanta is the site for the 2003 Meeting. The IAL Board of Directors
recently made the Disneyland choice when presented with a limited time special
offer for exceptional post-9/11 room rates, and a number of additional perks
offered by the hotel for an early decision. The proposal came from the
California Association of Laryngectomees via its current President, and WW
member, Wayne Baker. So fish through your junk closets for those old mouse ears
and practice singing "It's a Small World."
Cancer Rates Fall,
But Numbers Expected To Rise
In May, the American Cancer Society announced that cancer rates are
continuing to fall in the United States, but that the actual number of cancer
patients will double by 2050 because the population is aging.
Since 1993, cancer death rates have declined and the incidence rates, the
number of people newly diagnosed with cancer, has been unchanged. But the ACS
pointed out that, for the most part, cancer is a number of diseases which
primarily effect the older portion of the population. And as the population
continues to grow and age, with a higher percentage of the population being
older, more people will develop cancer.
The report said that the death rate from cancer in the US fell from 1993 to
199 an average of more than 1% per year. One exception was lung cancer death
rates in women. This increase reflects the rise of the popularity of smoking
Cancer experts say smoking causes 90% of lung cancer cases, and lung cancer
is the world's leading cancer killer since it is often not caught at an earlier
and more treatable stage.
Death rates from cancer are down because better treatments mean people
live longer, screening catches many cancers earlier when they are more
treatable, and fewer people are now smoking.
Be Done Under Local Anesthetic
Research conducted in the Netherlands has demonstrated that secondary
tracheoesophageal punctures (done after the healing from the laryngectomy
operation) can be done using a local anesthetic, and without hospitalization.
The research, published in a recent issue of The Laryngoscope,
concluded by stating that the traditional TEP technique can be done on an
outpatient basis under local anesthesia, and hospitalization avoided.
by Judy Greiwe
Welcome New Members
We welcome the 18 new members who joined us during June 2002:
Peter Baumle - Siemens
Neutral Bay, NSW, Australia
Sandy Fisher - Caregiver
James & Janet Gilbert
Vero Beach, FL
Montgomery Village, MD
Pembroke Pines, FL
Rotonda West, FL
Abbotsford, BC, Canada
Bay City, TX
C. Dean West
Cocoa Beach, FL
As a charitable organization, as described in IRS § 501(c)(3), the
WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions
in accordance with IRS