The IAL

Terrie Hall is an inspiration not only to laryngectomees but also to many individuals nationwide.

Her list of achievements include but are not limited to:

• IAL Board Member
• Team Captain of American Cancer Society's relay for life
• Member and officer of the Western Piedmont Speak Easy of Winston-Salem
• SAVE member

Terrie has devoted her time, love, and passions to speaking to various kids about the dangers of tobacco.  She has been awarded the North Carolina Distinguished Service Award during her efforts. Terrie was also awarded the Outliving Life Award at the 2011 Annual Meeting in Kansas City, MO.

Click on this link to watch a powerful video of Terrie Hall.

Click http://www.truthagainsttobacco.com/terrie.php to watch her video!

The International Association of Laryngectomees Board of Directors passed a resolution in November 2011 urging all U.S. clubs and their individual members to communicate with Medicare and their Congressional representatives in order to change reimbursement rules for the indwelling TEP prosthesis. The Association requests that ALL laryngectomees, regardless of their method of speaking or individual situations, join together in this effort. With only about 50,000 laryngectomees in the United States we must be willing to stand together in support of one another.

Previously it was possible for patients to order their own indwelling TEP voice prosthesis directly from the manufacturer with their doctor's prescription. The laryngectomee would pay for the prosthesis and take it to their clinic to have their MD or SLP insert it. They would then request reimbursement from Medicare.

Currently the only way to get the cost covered by Medicare is if the prosthesis is provided by the MD or SLP at the time of insertion. And many clinics are not able to afford to spend $1000-$2000 to maintain a stock of different types and sizes of prostheses. A related problem is that Medicare currently only reimburses a maximum of about $99 for an indwelling prosthesis (which cost from $177-$350.) This represents in a financial lost to most clinics who cannot recover the rest of their cost through other fees.

What is happening is that many clinics are responding by no longer offering this service (and forcing us to travel extreme distances to find a participating clinic), our being given no choice among different types and brands of prostheses, being required to bring a prosthesis with us (and paying the entire cost ourselves), being put in the position of having to choose our own prosthesis (something that ought to be a medical decision based on individual needs), and being pressured into using a less expensive patient-changed type prosthesis.

A high percentage of laryngectomees are not good candidates for the patient-changed voice prosthesis.  There are many reasons including that their puncture is in a difficult location, they lack the eyesight or manual dexterity to change it themselves (and there is no one at home who can do it), they need the longer life of the indwelling because they live some distance from their clinics, and others.

If a laryngectomee brings his or her own prosthesis and it turns out to no longer be the length they need the professional may have to temporarily place a catheter in the puncture to keep it from growing closed and sacrificing the ability to speak until the correct size can be ordered and another appointment scheduled.

Most laryngectomees are senior citizens on Social Security and Medicare, and many cannot afford the cost of paying the entire cost of an indwelling prosthesis out-of-pocket.

One of the worst possible outcomes would be if a patient loses a prosthesis (pushed through into the esophagus or coughed out). Unless they can quickly place something in the puncture to keep it open it could grow shut requiring another puncture surgery. For this reason and also when we travel and the fact that a prosthesis can leak at any time and, a laryngectomee ought to be able to get a spare prosthesis and have the cost reimbursed.

But by far the greatest risk for laryngectomees having to pay the entire cost of their prostheses is that many will change them less often in order to save money. This will inevitably result in laryngectomees keeping their leaking prosthesis in longer and risking developing aspiration pneumonia. This risks an unnecessary and expensive to treat illness and hospitalization; and even death.We (and YOU) Can Make A Difference!