Internet Laryngectomee Support
July 2002


Study Suggests That Majority Of Larys Do Not Have Access To Support Groups, Or Are Not In Touch With Them

     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 laryngectomees themselves.
    
Secondhand Smoke In The News


     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 the child. 

     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 neglect.

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 not, 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.

Disneyland In 2004!


     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 among women.

     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.

TEP Can 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.

Lary Laughs

by Judy Greiwe
 

Welcome New Members 

    We welcome the 18 new members who joined us during June 2002:

 

Peter Baumle - Siemens
Piscataway, NJ
  PBaumle@siemens-hearing.com   
Rita Brown
Lithonia, GA
Rita_Brown@comcast.net
Reginald Clement
  Neutral Bay, NSW, Australia   
rdc4@hotmail.com
Sandy Fisher - Caregiver
Sammamish, WA
webmaster@san-dsbulldogs.com
James Francis
Concord, CA
jimby94520@yahoo.com
James & Janet Gilbert
Vero Beach, FL
jigjeg@msn.com
Linda Haller
Montgomery Village, MD
lihaller@bechtel.com
William Hayward
Athens, GA
wlhayward@msn.com
Jimmy LaFrance
Bertram, TX
bertramtrader@earthlink.net
Norman Leveille
Pembroke Pines, FL
Naleveille@msn.com
Donna McGary
Woburn, MA
dlmcgary@adelphia.net
Daniel Miller
Tyler, TX
DisabledVeteran7@aol.com
Joyce Murphy
Rotonda West, FL
joycemu@comcast.net
Gerry Perry
Venice,FL
Mischap@msn.com
Freda Pitney
Abbotsford, BC, Canada
fredaandmaureen@shaw.ca
Joe Reed
Bay City, TX
djreed@wcnet.net
C. Dean West
Cocoa Beach, FL
  shortysbanks@yahoo.com   
Chuck Wolosko
Meriden, CT
ChWol@aol.com

 


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