large lung volumes that facilitate effective coughing and maintaining lung health.

It is unfortunate that clinicians using NIV too often do not provide NIV via volume ventilators, do not provide mechanically or manually assisted coughing (with air stacking), and rarely provide 15 millimeter angled mouthpieces for daytime NIV.

There also is a tendency to use nocturnal BiPAP at suboptimally low spans [differences between inspiratory and expiratory pressures] that minimally assist breathing and slightly delay, but do not prevent, ventilatory failure.

None of our more than 100 DMD patients on continuous NIV have undergone tracheostomy, even though many of these patients have been using NIV continuously for over 20 years. Continuously ventilator-depen-

dent ALS patients whose trach tubes we have removed have at times gone as long as 10 years before requiring re-tracheotomy.

Tracheostomy ventilator users can not use glossopharygeal breathing [a gulping, “frog-type” breathing] and must therefore always be worried about accidental tube disconnections and sudden ventilator failure.

On the other hand, many of our DMD and other NIV patients can frog breathe sufficiently to avoid daytime ventilator use entirely and awaken from sleep using this technique to breathe before realizing that their ventilators had stopped. That is true security that is eliminated by tracheostomy ventilation.

I agree wholeheartedly with Ms. Huberty’s statements about “additional years of good quality of life” being

facilitated by tracheostomy for the right patient.

In my opinion, however, nonbulbar ALS and muscular dystrophy patients are virtually never “the right patients” for invasive tubes.

John Bach, M.D.

Co-Director

MDA Clinic

University of Medicine and Dentistry of New Jersey Newark, N.J.

Editor’s note: See “Simple and Safe,” page 42, by Mike Munn, a man with limb-girdle muscular dystrophy who opted to use full-time noninvasive ventilation with a volume ventilator and noninvasive rather than invasive ( tracheostomy) interfaces. q

MDA TASK fORCE SENDS LETTERS ABOUT MEDICARE DME RESTRICTIONS

Letters of support from the Steering Committee of the MDA National program. This includes medically necessary adaptive seating, Task Force on Public Awareness have been sent to Congress sup- positioning and mobility devices, and speech generating devic-porting efforts to revise restrictive Medicare funding policies for es. ^{durable medical equipment.} n The Medicare Durable Medical Equipment Access Act of 2007 Beginning in April 2008, new Medicare policy will restrict those who (HR 1845), introduced by Rep. John Tanner (D–Tenn.); and rely on mobility equipment and some types of assistive technology S 1428, introduced by Sen. Orrin Hatch (R–Utah), would delay to a list of equipment vendors, selected by a competitive bidding competitive bidding until quality standards are implemented and process. Medicare users will be authorized to use only two or three a special oversight committee is formed. The bill also authorizes vendors. exemptions for rural areas and smaller regions.

This policy “will have a dramatic adverse impact on the ability of The Task Force letters of support for these revisions, sent to the bills’ durable medical equipment consumers to purchase and maintain sponsors, read in part: ^{equipment that is customized for their medical needs,}” ^{say Task} “On behalf of … the tens of thousands of U.S. citizens served by Force steering committee members. “This directly compromises the _{MDA who rely on complex and customized medical equipment for} quality of their lives, especially those living in rural regions of the _{mobility and independence, we are writing to register our support of} ^country.” [the proposed legislation].

In an effort to revise this new Medicare policy before it goes into “_{[Medicare’s] limitation on choice of vendors will drastically com-} ^{effect, two bills have been introduced in Congress:} promise customer service and customization of equipment to n The Medicare Access to Complex Rehabilitation and Assistive individual needs. The existing policy promotes a ‘one-size-fits-all’

Technology Act of 2007 (HR 2231), introduced by Rep. Thomas concept of care.

^{Allen (D–Maine), would exempt all} “^{complex rehabilitation prod-} “We wish to underscore the importance of [the proposed legislation] ^{ucts and assistive technologies}” ^{from the competitive bidding} and thank you for your support of this critical legislation and advocacy on behalf of individuals

with neuromuscular diseases who are served by MDA.”

The letters were signed by steering committee members Bill Altaffer of Tucson; Jan Blaustone of Nashville, Tenn.; Mike Neufeldt of New Berlin, Wis.; and Chris Rosa of Flushing, N. Y.

Mike Neufeldt Chris Rosa

Bill Altaffer