Medicare Changes May Leave ALS Patients Without a Voice

As of December 1, 2014, some Medicare beneficiaries with amyotrophic lateral sclerosis (ALS) could lose access to certain technological devices designed to facilitate communication, according to a report from Kaiser Health News. Although ALS awareness reached the national spotlight this summer with a far reaching fundraising campaign known as the “Ice Bucket Challenge,” money and notoriety have not insulated patients with ALS from what could be damaging Medicare changes, which could put limits on the ability of ALS patients to effectively communicate.

Speech Devices

At issue are speech generation devices, which are the devices that many patients with ALS use to communicate with others both at range and up close. In a February, 2014, “Coverage Reminder” posted by CMS, a distinction was drawn indicating that Medicare may change the way it reimburses speech devices. Historically, Medicare has provided reimbursement for two kinds of speech generation devices, those classified as “dedicated devices” and those that are upgradeable or “locking.” According to the ALS Association (ALSA), since 2001, Medicare beneficiaries have been able to purchase what are known as locking devices and receive Medicare reimbursement for the basic functions of the device. Then, if a beneficiary chooses, the beneficiary can pay out-of-pocket, without Medicare reimbursement, to unlock additional functions, like word processing, accounting, or other non-medical functions. The locking devices are to be distinguished with devices that only serve a speech generation function. Medicare has also historically covered these “dedicated devices.” Traditionally, Medicare has covered 80 percent of the cost of basic speech generation devices, without regard as to whether they are dedicated or upgradeable.

Change

The Coverage Reminder appears to upend the traditional reimbursement model and “specifies that in order for a speech generating device (SGD) to be considered for reimbursement under the Durable Medical Equipment (DME) benefit, it must be a “dedicated” device.” According to the KHN report, beneficiaries and patient advocates have read the CMS notice to mean that beneficiaries will no longer be provided the opportunity to upgrade reimbursable devices, even at their own cost. In other words, under the new coverage, Medicare will only cover basic devices that are incapable of upgraded functioning. The results are serious for ALS patients who may lose functionality like the ability to connect to the internet. For some patients, that would mean losing the only available means to communicate with people who are not in their immediate vicinity. In some cases, without access to the internet, patients will be left vulnerable and unable to call for help if the need arises.

Device Cost

The changes are likely due to the increases in technology and cost. KHN reports that a basic speech generation device costs somewhere in the neighborhood of $4000, while upgrades, for things like eye-tracking technology, can bring a device’s cost up to as much as $15,000 or more. According to KHN, Medicare has typically paid for about 3,000 devices each year.

Rentals

The coverage change follows another change by CMS that alters the way patients come to own devices. According to the ALSA, on April 1, 2014, Medicare changed the way it pays for speech generation devices by eliminating the ability of Medicare beneficiaries to either rent or outright purchase a device. Under the new paradigm, beneficiaries are required to rent a device over a 13-month period before being granted the right to purchase the device. Each month, people with ALS are contacted by a device’s manufacturer to be sure that the device is still needed. Only upon the expiration of the 13-month period do the manufacturer’s questions stop.

Outreach

Efforts have been made to slow or stop the decision to change speech generation device reimbursement. For example, 200 members of Congress sent a letter to CMS urging the agency to address ALS patients’ concerns about device access. CMS has not yet responded to the congressional request for action. ALS patients are hoping that they can stop the change before it takes effect in December. According to KHN, ALS patients are quick to point out that they are not asking for Medicare to cover any extra device functionality, they just want Medicare to continue to cover the portion of the cost of speech generation devices that the program has always covered.