Thursday, September 25, 2014

ALS Advocates and Congress Must Have a Contingency Plan If CMS Doesn't Respond to Congressional Letter

Here is a link to,a press release tailored to the Maine constituents of two Senators who signed the September 11th letter to Administrator Tavenner of the Centers for Medicare and Medicaid Services (CMS) regarding Speech Generating Dèvices (SGD's).  I want to publicly thank Senator Collins for co-sponsoring the letter and to Senator King's staff for getting engaged in this issue early on. 

Clearly, there were many parties involved in crafting the letter and getting the 200 signatures of other members of Congress. Nonetheless, the letter called for a response to pointed questions from CMS on or before October 1st. I've written my contacts at both King's and Collins' offices to ask what the contingency plan is should CMS miss the deadline. So far, no answer.

As individual advocates, and even the advocacy groups formed by professional associations and organizations, we should be prepared with a unified strategy assuming CMS does not respond satisfactorily to the letter from Congress by Oct. 1st. WE MUST BE PREPARED TO MAINTAIN THE PRESSURE ON CMS TO ENGAGE IN AN OPEN, HONEST DIALOGUE FOR CHANGE!

If CMS maintains their current position of obfuscation, blaming manufacturers of SGD's and pointing to the National Coverage Determination, and the various individual advocates and industry and professional advocacy organizations don't coordinate our efforts, any change will take longer - and ALS patients don't have time to waste.

As the line from the movie Gladiator says, "As one!"

Saturday, September 13, 2014

Medicare says "That's our story and we're sticking to it"

Late last evening I opened an envelope from the Centers for Medicare and Medicaid Services (CMS). It contained an obvious boilerplate letter (tipoff: the date is rubber stamped) from Laurence Wilson, Director, Chronic Care Policy Group.

In this letter, Mr. Wilson repeats verbatim, what has obviously become the CMS official statement on the SGD issue. The same statement that was attributed to Aaron Albright in the September 2nd edition of the Washington Post and, in part, says: "Medicare has covered speech-generating devices since 2001, which greatly improve the day-to-day lives of many beneficiaries. This policy has not changed, nor have we proposed this coverage to change."

This is very clever wording. Something that seems to have been lost on advocates for the disabled in the heat of battle is that CMS is correct when it states they haven't changed any rules. That's the grain of truth which makes makes any Big Lie effective. Remember, the document that started the uproar, issued by CMS on February 27th of this year, was a Coverage Reminder. The obfuscation is, they are changing the way they administer the existing rules. Baseball fans and players understand the frustration of an umpire who shortens the strike zone in the 7th inning. That's effectively what CMS has done with this Coverage Reminder. They've put Medicare beneficiaries, DME suppliers and SGD manufacturers on notice that they are changing the strike zone. The problem is, this isn't a game.

(NOTE: Many argue that by reclassifying SGD's to the "capped rental" category of Durable Medical Equipment (DME) from the "fully purchased" category constitutes a rule change. We think so, and CMS disagrees (to no surprise). The issue of how SGD's are paid for was not addressed in the February 27th Coverage Reminder so we are not addressing that issue in this article.)

By changing the way CMS administers the rules, they are placing thousands of speech impaired people at risk of social isolation, not being able to effectively communicate their wishes to medical staff and family and have restricted beneficiaries, in this age of Facebook, Twitter, Instagram and texting, to only face-to-face communication. And the irony is, CMS never paid for these added "frills" - ever. It was always paid for by the beneficiaries out of pocket.

In a letter delivered to CMS yesterday, and signed by 27 Senators and almost 200 House members, the closing paragraph begins: "The patients who are in need of SGD's are some of Medicare's most vulnerable beneficiaries." Very true. And CMS has inexplicably changed the strike zone, ignored pleas from Congress and, to be kind, they are now artfully weaving a fictitious story line which flies in the face of reality.

Why? I'm becoming more convinced with each passing day, it's one of two things:

1.  It's just an enormous bureaucracy run amok and too proud to admit it's messed up, or

2.  It's an attempt to pass costs on to beneficiaries.

If it's number 2, taking into consideration the Congressional sentiment that CMS' decisions attack the most vulnerable among us, shame on them.

An article from today's The Hill:

Tuesday, September 2, 2014

Why Would Medicare Lie to the American Public Rather Than Defend It's Position?

At 8:02 PM last evening, the Washington Post posted online a wonderfully written Op-Ed piece by former NFL star Steve Gleason.

At 8:10 PM, the paper posted the following, carefully worded statement from Medicare spokesperson Aaron Albright

“We are committed to ensure that beneficiaries have access to needed technologies to improve their quality of life, including the coverage of speech-generating devices for individuals with a severe speech impairment. Medicare has covered speech-generating devices since 2001, which greatly improve the day-to-day lives of many beneficiaries. This policy has not changed, nor have we proposed this coverage to change. With the rapidly evolving technology in this area, our Medicare payment contractors are currently undergoing a product review of available speech-generating devices to ensure that they comply with our coverage rules and the Medicare law. CMS extended this review until Dec. 1, 2014 to ensure that we [are] able to review and address issues that stakeholders have . . . raised, including the ALS community’s desire for beneficiaries to have access to devices with expanded functionality.”

The reaction on social media has been growing exponentially as disability rights advocates, the afflicted and their families wake to this news. Advocates and manufacturers as well as members of Congress have been flooding The Centers for Medicare and Medicaid Services (CMS) with letters of reaction to a Coverage Reminder CMS issued on 2/27/14 specific to Speech Generating Devices (SGD's).

The Coverage Reminder states, in part, that:

"This benefit does not extend coverage to the broader range of augmentative and alternative communications devices (AAC) that have capabilities exceeding the sole function(s) of speech generation such as (not all-inclusive): wireless and cellular communication capabilities, environmental control capability, non-speech generating software (e.g., games, word processing, email)."

Essentially, the only type of SGD Medicare will allow is one which can only perform communication to those within range of hearing. Don't take my word for it, here is the text of the actual CMS reminder:

The more important point here is: Why did Medicare choose to release this carefully worded and somewhat obtuse statement rather than defend it's position as outlined in the 2/27 Coverage Reminder? CMS is dodging the issue, not responding in detail to the public, advocacy groups and even Congress. In his statement, Mr. Albright states: 

"This policy has not changed, nor have we proposed this coverage to change."

As with any lie, there is a grain of truth. Mr. Albright, it's the changes in administration of the rules we are concerned about. As you wrote this statement, you knew people were being denied devices. You knew that CMS was changing the administration of the rules to deny paralyzed people eye gaze equipment to access the functionality of SGD's. Why lie? Why not say: "We're changing the playing field because it's an attempt to shift costs to beneficiaries."? or even "We don't believe that disabled people need internet access." 

Mr. Albright, your boss, Ms. Tavenner has chosen to ignore my letter to her ( I know, she's ignored the pleas of housands to at least explain herself. I'll give you the same opportunity. I can be reached through this blog or at: 

I'd love to hear why CMS is dodging this issue and using you to perpetuate an outright lie to the most vulnerable among us.