We Are Thankful for 3 Amazing Women

            

 As we close out 2018 and move into a new year, we’re thankful for many things. We’re eternally thankful for every person who donated money of any amount. We’re especially thankful to every member of our growing $10 For pALS Family (https://www.hope-jg.org/copy-of-donate). $10 each month, multiplied can sustain our Helping Hands fund which provides a variety of needed items to families fighting ALS. Please consider joining. 
On a personal note: I’m humbled and thankful for breaking through the 11 year mark with ALS with my amazing wife, caregiver and Co-Fouñder Linda. There’s no question that I wouldn’t be here and this foundation wouldn’t exist without her tenacity, instincts, passion and boundless love. 

We’re also thankful for our seven Innovators   Each of these individuals brings a unique perspective and life experience to their individual area of expertise. They also share one common trait - a passion to help the hurting.

We’re particularly thankful that three of the seven Innovators are strong, visionary women. We were just notified that Robin Gentry-McGee, Founder and CEO of  Functional Formularies (http://www.functionalformularies.com/) was just named as one of 35 World Changing Women In Conscious Business (#27 in this article).(https://consciouscompanymedia.com/sustainable-business/35-world-changing-women-in-conscious-business-2019/). 

 A common trait Robin shares with her sister Innovators is refusing to accept the status quo for hurting people. All three have specific life experiences that were  “lightbulb moments” which inspired their innovations. 

For Robin, her Father sustained a traumatic brain injury and Doctors painted a bleak picture for his recovery.  He was in a coma and required tube feeding. During a hospital visit Robin read the ingredient list on her Dad’s
formula package. That was her lightbulb moment. The unfortunate standard of care in hospitals for tube fed formulas are formulas which are loaded with sugars, cheap carbs and artificial vitamins.

As a trained Chef who had worked only with organic foods, Robin knew instinctively her Dad needed real food to have any chance for recovery.  After much experimentation in her home kitchen Robin found a combination of legumes,  vegetables, oils, spices and other real food ingredients that replaced the hospital formula.  Her Father improved   So much improvement that the day cane where her Dad stood up and shook the hand of one of the Doctors who told Robin he’d never recover   The Doctor told Robin “What you done here is a miracle.”  Food as medicine - what a concept.  Robin launched Functional Formularies and over just five years has helped thousands of adults and children improve their quality of life with her products Liquid Hope & Nourish.  

Then we have Dr. Rupal Patel, Founder and CEO of VocalID (https://vocalid.ai/ ). Rupal was teaching speech language pathology  and associated curricula at Northeastern University when she had her lightbulb moment.  Rupal was at a Conference with other educators, clinicians and patients. When she heard conversations involving speech impaired patients “speaking” using devices pre-loaded with synthetic voices. It struck her that many of the patients, whether a  12 year old girl or a 55 year old man, were often using the same voice.  As Rupal says in her first TED Talk: “We  wouldn’t dream of giving a prosthetic leg of a grown  man to a young girl. Why then, the same prosthetic voice? I wanted to do something about this.” 

The result was the creation of a unique process of combining digital recordings of a healthy donor voice with any sound from the recipient/patient.  The product of the process is a synthetic voice that contains the “vocal DNA” of the patient with the vocal clarity of the donor. A voice that  is unique to that individual. A voice that makes them distinctive - again. 

Rupal has been recognized in a number of publications including  Wired, the Wall Street Journal, NPR and more. She was also recognized as a “Top Women in Cloud” by CloudNOW. (https://youtu.be/F-qwuG8Eweo)

Our newest Innovator is Julie Lineberger, Founder and CEO of WheelPad  (https://www.wheelpad.com/). Julie’s lightbulb moment came as a result of a tragic accident that left her Godson, Riley Poor, a tetraplegic.    After Riley’s rehabilitation he had a challenging time finding an accessible apartment. When he decided to buy a house, he worked with Julie and her husband Joe’s firm Linesync Architecture to make the home accessible   From the time of Riley’s accident to completion of the home renovations was three years. But not everyone in Riley’s situation is related to an architect. 

This experience caused Julie to work with Riley and Joe  to develop a solution for others who would find themselves in a similar position.  The result is WheelPad is an eco-friendly 200 square foot universally accessible modular addition (bed & bath) that can be temporarily or permanently attached to an existing home. 

Julie has been recognized as a Top Socialpreneur by  Leading Women Entrepreneur and Women’s Day Magazine  (http://blog.nj.com/leading_women_entrepreneurs/2017/05/the_top_25_leading_women_annou.html).

We are honored to be associated with these amazing women. We wish them all the best in 2019. We thank them for their collective passion, heart but most of all, for their friendship.        

S

Should the Dying Have the Right to Try Experimental Treatments?

Maine is in line to become the 6th state to pass Right to Try legislation. State Representative Richard R. W. Longstaff (D - Waterville) has introduced a bill which will have a public hearing before the Joint Committee for Health and Human Services on April 6th. The proposed bill (LD180) is titled "An Act To Allow Terminally Ill Patients To Choose To Use Experimental Treatments".

I received an email from the HHS Committee Clerk as I was watching Tweets and Facebook posts from a rally in DC by ALS patients, caregivers and advocates in support of the FDA allowing ALS patients the right to choose to try a drug named GM604. GM604 has passed a small Phase 2A trial. The results of the trial appear promising as have many of this drugs predecessors, which failed to show efficacy in later stages of research. 

However, the failure or success rate of any "experimental" drug isn't the issue. In my view the growing "Right To Try" movement - especially for ALS patients and their families - is about getting the government out of the way of protecting an informed individual from himself.

The fact is, there are very few afflictions for which modern science has failed to find multiple, at least marginally effective drugs and therapies for. In the 76 years since Lou Gehrig put ALS into the public consciousness, the FDA has approved one drug for ALS. That drug is known as Rilutek or Riluzole. Research has shown it to extend life expectancy by three months. A long way from a cure.

There are very few, if any forms of cancer for which there isn't some form of treatment. I'm certain there diseases which are statistically as (or more) rare than ALS which have no cure. My point is, the diseases for which there are no effective treatment to even retard the disease process are few and far between. ALS remains a riddle.

There is much concern in the research community over the Right To Choose. I understand and respect the concerns of researchers who claim giving access an unproven drug, especially to patients who don't meet the trial criteria,  will jeopardize the data that is so important to verifying efficacy. As an ALS patient, I respectfully say: Get over it.

I'm dying. I have a brain that still functions moderately well (although my wife may disagree on some days). There are no options the traditional medical community can offer me, except Rilutek and moral support. With all due respect to alternative practitioners and their patients, been there done that. In my experience if the alternative practitioners had anything of value to offer, they would be open to scientific scrutiny, doing studies and demonstrating the efficacy of their treatments as well. People certainly have the Right To Try alternative medicine. I just remain a skeptic.

So, with no options, a healthy brain and an appropriate level of information, why shouldn't I be allowed to try a drug that has shown promise in a legitimate Phase 1 (or beyond) trial? Should I not be free to risk dying sooner than I might if I didn't try? 

Be careful how you answer that last question. It's a trap of logic. If you answer "No, you don't have the right to try.", then we should ban sky diving and rock climbing. Period. Those are inherently risky activities which present the risk of death. Do healthy people have more freedom to assume risk than the terminally ill among us?

The current drug approval process of the FDA is archaic. It hasn't undergone significant scrutiny or change since it started in the 1960's. Add to that an approval pipeline that is clogged with applications for new toenail fungus and erectile dysfunction drugs, because that's where the money is, and you have a process which doesn't so much protect the public as it does rubber stamp the most profitable products for the pharmaceutical industry. (And yes, I understand that the profits from popular, mass market drugs help fund R & D for other drugs. Just makes one wonder who the FDA really works for.)

Upon first read  Maine's proposed legislation isn't perfect. For example, the draft bill's definition of "Terminally Ill" is: "...a disease or condition that, without life sustaining measures, is reasonably expected to result in death within 6 months." This definition most likely would not cover ALS patients.  It is interesting that the 6 month timeframe aligns exactly with the requirement for a patient to qualify for Hospice care. More interesting is that most, if not all Hospice providers won't provide "life sustaining measures" to patients in their care. So...if the law passes as is, patients will be forced to choose between Hospice and Right To Try.

Regulators, researchers and drug companies have valid concerns regarding Right To Try. They should be part of the dialogue. But they should also be painfully aware that this issue won't go away. Healthcare advocates and families facing terminal disease are demanding the Right To Try. The horse has left the barn, as they say.

Regulators, researchers and drug companies are free to oppose the Right To Try. Just as I should be free to try. Let's all work together to arrive at a solution that works for all, shall we?

New Dietary Guidlines Ignore The Sick and Elderly

Every five years the US government releases new dietary guidelines for the American people. The guidelines were introduced this week and recommend a "healthy eating pattern"...as opposed to an unhealthy one, I guess. 

 "One new recommendation is that added sugar should be 10 percent of daily calories. That's about 200 calories a day, or about the amount in one 16-ounce sugary drink. The recommendation is part of a larger push to help consumers isolate added sugars from naturally occurring ones like those in fruit and milk. Added sugars generally add empty calories to the diet."  *Source FoxNews.com

So...these are the new government guidelines for sugar intake. 200 calories of sugar is equivalent to 12.5 teaspoons per day (still a lot). Shouldn't these guidelines apply to the sickest among us too? Obviously not. 

"The carbohydrates in Isosource 1.5 Cal provide the majority of the calories in the tube feeding formula. Maltodextrin and sucrose act as the primary source of carbohydrates in the formula. A 250-ml can contains 44 grams of carbohydrate." * Source: Livestrong.com

People on enteral formulas routinely are prescribed commercial formulas laden with sugars. As described above, Nestlés Isosource 1.5 has 44 grams of carbohydrates, mostly from sugars. If we do some simple math (hang with me, it's worth it): 

A typical adult patient requires 2250 calories per day (or 6 - 250 ml containers of Isosource @ 375 calories per container). At 44 g per of carbohydrates per box (remember, mostly from sugars) that totals 1020 g of carbs per day or 55.6 tsp. If we give the benefit of the doubt that only 75% of those calories are from sugar, that equates to 41.7 tsp of sugar per day.  That's 3.5x the recommended sugar intake of 12.5 tsp!

The new government guidelines say, to stay healthy, Americans should limit sugar intake to 12.5 tsp a day. YET, the medical community is routinely prescribing "semi synthetic nutritional formulas" that pump 3.5 times the amount of sugar into people who are sick and who NEED  REAL FOOD!

Now, I'm sure there are those who will take exception to my math. I'm not a Registered Dietician or Nutritionist. Here are some facts which are indisputable:

1)  Over the past few years the evidence against sugar has been mounting. In March of 2015 the World Health Organization issued the same guidelines as the US just restated. The WHO even took it a step further and stated that 5% of daily intake (6tsp) would "provide additional health benefits". The scientific evidence that sugar is a major contributing factor in cancer, heart disease and Type-II Diabetes is clear.

2)  Enteral formula is a big business cornered by a handful of global corporations. Add to that "nutritional supplements" like Boost (first three ingredients: Water, Corn Maltodextrin, Sugar) and Ensure (first three ingredients: Water, Corn Syrup, Sugar) which are marketed to seniors, and it's a multi billion dollar business.

3)  Liquid Hope, the worlds only organic, whole food feeding tube formula (http://functionalformularies.com/products/liquid-hope), has a Medicare code (B4149).  In spite of this, patients continue to have a more difficult time getting approval for insurance coverage for Liquid Hope than they do more established formulas manufactured by the likes of Nestlés and Abbott. (File under: Things that make you go hmmm...).

4)  Speaking from personal experience and comparing notes with other "tubees", there are unhealthy side effects to the commercial formulas. Erratic gastrointestinal issues (and I'm being polite here), regurgitation which often results in aspiration, and spiking blood sugar levels are just a few. 

 There is a growing community of patients who have taken to "blenderizing" their own formulas. For those who have the time, the help and the willingness to do that, it's a viable and healthy option. But for patients not willing or able to prepare their own formulas, why should they have a harder time procuring a commercially made, Medicare approved, whole food formula than one which is now, by definition, considered unhealthy? 

In the coming  weeks we will be joining others to ask Congress to look into the nutritional content of these sugar loaded enteral formulas and supplements. In my opinion, it's a travesty that the sickest and most frail among us are being told by these global corporations that their products are "nutritionally dense" and full of healthy benefits.  

Patients and Seniors need to know - they deserve to know - what is going in their bodies. More important, they deserve equal access to healthy alternatives. 

Stay tuned for more...

*Note: These comments are my own and are not to be construed to be the opinion of Functional Formularies makers of Liquid Hope.

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!"

http://politicalnews.me/?id=30211&keys=SGDS-ALS-NEUROLOGICAL-DISEASES

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:

http://thehill.com/policy/healthcare/217622-lawmakers-als-patients-hurt-by-new-medicare-policies

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.

http://www.washingtonpost.com/national/health-science/former-nfl-player-with-als-uses-his-eyes-to-type-and-technology-to-speak/2014/08/29/0de480ac-2d1e-11e4-9b98-848790384093_story.html

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:

http://www.cgsmedicare.com/jc/pubs/news/2014/0214/cope24807.html

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 (http://hope-jg.blogspot.com/2014/08/an-open-letter-to-marilyn-tavenner.html). 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: jgregoire7@roadrunner.com. 

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.

Has YOUR Congressional Rep Signed On to Confront CMS?

The Hope-JG Foundation shared a link.

47 minutes ago · Edited

SEE THE ATTACHED NOTE AND LIST OF CONGRESSIONAL MEMBERS WHO HAVE NOT SIGNED THE "DEAR COLLEAGUE" LETTER CIRCULATING THE HILL! If your Congress people haven't signed on, contact their office and ask why. This means voices for the voiceless.

MAINE PEEPS! Angus King is the only Maine member who hasn't signed on! Call or email his offices today!http://www.congressmerge.com/onlinedb/cgi-bin/newmemberbio.cgi?member=MEJR&site=congressmerge

OUR CALLS AND EMAILS ARE WORKING : You are part of change

Since the delay in the implementation of the PDAC certification of 12-1-2014 was announced last Friday the congressional sponsors of our "Dear Colleague" letter have decided to keep it “opened” for one more week to enlist as many supporters . Additional signatures means higher ability to make change. The goal is to have over 100 Signatures....... Before calling out CMS.

Coming out of our PDAC meetings today in Fargo it is super clear that we need to make this change through our elected officials. Keep calling, keep emailing… I can't stress that enough. Call everyone you know....... I guarantee for everyone person you call 10 ALS , and Rett Families (and so many others) will have a hug and a huge thank you behind it....

Lots of good news, but we need to keep up the push! See below for updated list of signers. Great addition today: Senate HELP Committee Ranking Member, Sen. Lamar Alexander. HUGE.

Current totals: 67 House Members; and 5 Senators (Collins, Landrieu, Vitter, Blunt, Alexander); and for what it’s worth: 33 states.
If we can add any additional pressure to any Senator please do what you can………….


Here is a current list of those who have signed on the letter. We need to address the ones that are not on this list:



Rep. Suzan DelBene (D-WA)
Rep. Doc Hastings (R-WA)
Rep. Cathy McMorris Rodgers (R-WA)


Rep. Michele Bachmann (R-MN)
Rep. Betty McCollum (D-MN)
Rep. Erik Paulsen (R-MN)

Rep. Collin Peterson (D-MN)

Sen. Roy Blunt (R-MO)

Rep. John Larson (D-CT)

Rep. Julia Brownley (D-CA)
Rep. Tony Cardenas (D-CA)
Rep. Alan Lowenthal (D-CA)
Rep. Adam Schiff (D-CA)

Rep. Patrick Meehan (R-PA)
Rep. Jim Gerlach (R-PA)

Sen. Susan Collins (R-ME)
Rep. Chellie Pingree (D-ME)
Rep. Mike Michaud (D-ME)


Rep. John Conyers Jr. (D-MI)
Tim Walberg (R-MI)


Rep. G.K. Butterfield (D-NC)
Rep. George Holding (R-NC)
Rep. Walter B. Jones (R-NC)
Rep. Patrick McHenry (R-NC)

Rep. Mark Meadows (R-NC)

Rep. Michael E. Capuano (D-Mass.)
Rep. Katherine Clark (D-Mass.)
Rep. Joe Kennedy (D-Mass.)
Rep. Stephen F. Lynch (D-Mass.)

Rep. John Tierney (D-Mass.)

Sen. Mary Landrieu (D-LA)
Rep. Vance McAllister (R-LA)
Rep. Steve Scalise (R-LA)
Sen. David Vitter (R-LA)

Rep. Lee Terry (R-NE)

Sen. Lamar Alexander (R-Tenn.)
Rep. Phil Roe, M.D. (R-Tenn.)

Rep. Steve Chabot (R-OH)
Rep. David P. Joyce (R-OH)

Rep. Jim Renacci (R-OH)
Rep. Tim Ryan (D-OH)
Rep. Steve Stivers (R-OH)

Rep. Gregg Harper (R-Miss.)

Rep. Yvette Clarke (D-NY)
Rep. Chris Gibson (R-NY)
Rep. Richard Hanna (R-NY)

Rep. Steve Israel (D-NY)
Rep. Peter King (R-NY)

Rep. Dan Maffei (D-NY)
Rep. Carolyn McCarthy (D-NY)
Rep. Louise Slaughter (D-NY)
Rep. Paul D. Tonko (D-NY)

Rep. Kevin Yoder (R-KS)

Rep. Bradley Byrne (R-AL)

Rep. Carol Shea-Porter (D-NH)

Rep. Leonard Lance (R-NJ)
Rep. Chris Smith (R-NJ)

Rep. Peter DeFazio (D-OR)

Rep. C.A. Dutch Ruppersberger (D-MD)

Rep. Ileana Ros-Lehtinen (R-FL)
Rep. Dennis A. Ross (R-FL)

Rep. James R. Langevin (D-RI)

Rep. Raul M. Grijalva (D-Ariz)

Rep. James Lankford (R-OK)

Rep. Robert J. Wittman (R-VA)

Rep. Michael T. McCaul (R-TX)

Rep. Trey Gowdy (R-SC)

Rep. Brad Schneider (D-Ill)

Rep. Harold Rogers (R-KY)
Rep. Ed Whitfield (R-KY)

Rep. Kevin Cramer (R-ND)

Rep. Jared Polis (D-Colo)




Don’t Let Medicare Take the Ability to Communicate Away from People Living With Severe Disabilities! Act Today!

Recent Medicare changes are drastically reducing or totally inhibiting access to the technologies that provide people living with disabilities the ability to communicate. These are some of Medicare’s most vulnerable beneficiaries.

ACT TODAY: Contact your Representative and Senators and ask them to sign the letter“Ensure ALS Patients Retain Access to Critical Communication Tools Ensure; Join letter to CMS urging clarification of recent Speech Generating Device policies.”

Sweeping changes have been put in to place in 2014. The critical issues at hand:

Capped Rental
As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGD’s) used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments, when they enter a health care facility, such as a skilled nursing home, or hospice. Taking these highly specialized devices from this patient group leaves them no way to communicate at the patient’s most vulnerable moments and at a time when medical attention is critical.

Unlocked Devices
Effective September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient’s home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices, even though this is done at no additional cost to Medicare. The ability to “unlock” devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, internet, and text messages. As of September 1st, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text and even first responders in an emergency situation.

Eye-gaze Access
Currently, Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor's and speech language pathologist's evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye–gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives.

We cannot allow this to happen. We need to work together to change this decision.

How Can You Help? Your support is imperative NOW.

We need you to speak up for those who can’t and we need quick action to stop these devastating changes from impacting patients who are in desperate need of access to speech generating devices. We are asking you to please contact your local House Representatives and Senators, asking that they sign a bi-partisan newly introduced letter to Marilyn Tavenner, head of the Centers for Medicare and Medicaid Services (CMS) to address these changes. The Dear Colleague letter is titled:

"Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies"

The letter will be open for only one week; your members of Congress must sign-on by Wednesday, August 27th. It is currently sponsored by Honorable Member of Congress Cynthia McMorris-Rodgers, Honorable Member of Congress John Tierney, Honorable Member of Congress Erik Paulsen and the Honorable Senator Collins. Every phone call, e-mail, office visit matters! Please forward this to everyone who will act. If one of these is your member of Congress, please contact them and thank them for their support on this matter of critical importance.

Find Your Local Representative


Find Your Local Senator

Tobii ATI - Assistive Technology Solution

www.tobii.com

Assistive technology solutions that give individuals with communication disabilities a voice and a way to live more fulfilled, integrated and independent lives

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The Hope-JG Foundation

3 hours ago · Edited

Hey Maine friends! We are on the hunt for a free or cheap venue to host a fund raising event.. Only requirement is that it should have a stage for a band. Nightclubs, pubs, grange halls, dance halls...no limits on what kind of facility. We are early enough in planning that we can fit the event the around the venue. If you know a guy who knows a guy, chat him up and let us know. Thanks!

Oh yeah...it just shouldn't be in Fort Kent:)

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• Elizabeth Day Nangle and Laci Berry like this.

The Hope-JG Foundation shared a link.

12 hours ago

WATCH THIS ANND TAKE ACTION! As in the movie Gladiator, we can overturn this cruel ruling by CMS if we act "As one!" Write to congressional delegation - whether you can speak or not.

http://www.10tv.com/content/stories/2014/08/27/lancaster-ohio-medicare-funding-changes-may-affect-als-patient-needs.html

Medicare Funding Changes May Affect ALS Patient Needs

www.10tv.com

While the viral Ice Bucket Challenge is bringing awareness to Lou Gehrig’s decease, there’s concern over another issue for some sufferers.

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• Patty Meaney Whalen, Lynda Donnelly Dellinger, Linda Walker Gregoire and 2 others like this.

The Hope-JG Foundation shared a link.

August 22

Kudos to Sean Patrick O'Brien for writing an article that tells it like it is. Love you...in a manly way, of course:) PLEASE READ THIS,! Patrick talks about the care he receives at the Saling ALS Residence in the Leonard Florence Center in Chelsea, MA. A model we are determined to replicate in Maine!


http://time.com/3160305/living-with-als/

Living With ALS: 'I Can't Believe I'm Still Alive'

time.com

The past few weeks I've watched from my bed as the disease that is slowly killing me has turned into an overnight trend

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• Lissa Woodruff Stempek, Barry Morrill, Lynda Donnelly Dellinger and 4 others like this.

The Hope-JG Foundation

August 21

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• Laci Berry, Brian Bickford, Patty Meaney Whalen and 2 others like this.

The Hope-JG Foundation shared a link.

August 20

The Hope-JG Foundation store is open!

http://www.hope-jg.org/#!online-store/cagy

The Hope-JG Foundation | SHOP

www.hope-jg.org

The Hope-JG Foundation is an ALS charity with a focus on establishing an ALS/MS Residence in Maine. We exist to help families of ALS enhance the quality of life

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• Jose Chavez, Denise Piatt-Hord, Wanda Tidwell and 38 others like this.

The Hope-JG Foundation shared a link.

August 19

We first posted this before the Ice Bucket Challenge blew up and greatly increased the visibility of ALS in the public consciousness. Medicare has changed the rules for covering speech devices. They won't cover eye gaze hardware for those w... See More

The Hope-JG Foundation Blog: Time for Diplomacy is Running Out: CMS is Wrong

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Sara McLean likes this.
• 

  Michele Dupree 31,000 emails have hit congress and 7,000 to Burwell so far!

  1 · August 19 at 8:29pm
• 

  The Hope-JG Foundation replied · 3 Replies

The Hope-JG Foundation shared a link.

August 19 · Edited

Here is the story Amanda Hill did. My wife is amazing! And the Anchor even mentioned the foundation and building an ALS/MS Residence!

http://www.wcsh6.com/story/news/local/2014/08/19/ice-bucket-challenge-als-gregoire/14308791/

Ice bucket challenge represents hope to Windham man

www.wcsh6.com

A Windham man who's had ALS for 7 years appreciates the awareness and funds the ice bucket challenge has generated.

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• Top Comments

  Ernesta Stevens Kennedy, Ricky Judge, Katie Dube and 32 others like this.
• 

  Sarah Caldwell This is wonderful. Absolutely wonderful. We love you guys & think of you every day 

  2 · August 19 at 5:01pm
• 

  The Hope-JG Foundation Thanks Sarah! We think of you guys too:)

  1 · August 19 at 5:13pm
• 

  Ricky Judge nice job guy's

  1 · August 20 at 11:49am
• View 1 more comment

The Hope-JG Foundation

August 19

Amanda Hill just left. She shot the interview they teased on the 6 PM news. Look for it! As usual, my wife was stunning and articulate 

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• Sara McLean, Justin Whynot, Lauren Thomas and 4 others like this.
• 

  Andrea Millette I didn't get it here in Mass

  August 19 at 4:05pm
• 2 Replies

The Hope-JG Foundation shared a link.

August 17

http://hope-jg.blogspot.com/2014/08/stephen-hawking-als-and-importance-of.html

The Hope-JG Foundation Blog: Stephen Hawking, ALS and the Importance of Having a Mission

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to...

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• Sara McLean, Elaine Wierzbicki, Kenji Fujimoto and 6 others like this.
• 

  Sara McLean He is one of the most brilliant and thought provoking people I have ever known, not personally of course! Such an inspiration!

  1 · August 21 at 5:57pm

The Hope-JG Foundation shared a link.

August 13

Received several messages asking how to donate. Here's the link:

http://www.hope-jg.org/#!donate/c1ghi

Hope-JG Foundation Donate

www.hope-jg.org

The Hope-JG Foundation is a 501(c)3 Non-Profit ALS charity dedicated to helping families living with ALS and other neuromuscular diseases

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• Diane Clifford and Annie Hope like this.

The Hope-JG Foundation shared a link.

August 12

http://hope-jg.blogspot.com/2014/08/an-open-letter-to-marilyn-tavenner.html

The Hope-JG Foundation Blog: An Open Letter to Marilyn Tavenner About Medicare and Speech Devices

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Top Comments

  Susan Kujawa, Cecilia Satterwhite, Bertha Trevino and 25 others like this.
• 

  Nancy Geary Very good account of the implications of misguided decisions!!!

  1 · August 13 at 1:19pm
• 

  Michele Dupree Triple like! Thank you!!

  1 · August 12 at 11:29am

The Hope-JG Foundation shared a link.

August 11 · Edited

Wondering what the fuss is about regarding Medicare and Speech Devices? Watch this:

http://www.cbs46.com/video?autoStart=true&topVideoCatNo=default&clipId=10462864

www.cbs46.com

www.cbs46.com

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• Mandy Renteria, Maria Manos Clark, Greta Roberts and 6 others like this.

The Hope-JG Foundation shared a link.

August 11

http://hope-jg.blogspot.com/2014/08/a-new-normal.html

The Hope-JG Foundation Blog: A New Normal

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research.

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• Steve Kolb, Kate Hough Myhaver and 2 others like this.
• 

  Michele Dupree Another great blog, from the heart. You're awesome.

  1 · August 11 at 9:55am

The Hope-JG Foundation shared a link.

August 9

http://hope-jg.blogspot.com/2014/08/totally-without-hope-one-cannot-live.html

The Hope-JG Foundation Blog: Never. Lose. Hope.

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research.

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• Patty Meaney Whalen, Corey Jess Nickerson and Michele Dupree like this.
• 

  Michele Dupree Beautiful!!

  1 · August 9 at 10:13pm

The Hope-JG Foundation shared a link.

August 8

http://hope-jg.blogspot.com/2014/08/sherlock-holmes-rose-and-providence.html

The Hope-JG Foundation Blog: Sherlock Holmes, A Rose and Providence

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class...

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• Linda Walker Gregoire, Patty Meaney Whalen and Lynda Donnelly Dellinger like this.

The Hope-JG Foundation shared a link.

August 7

http://hope-jg.blogspot.com/2014/08/ice-bucket-challenge-great-awareness.html

The Hope-JG Foundation Blog: Ice Bucket Challenge A Great Awareness Tool

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Sara McLean, Takashi Wanami, Kenji Fujimoto and 3 others like this.
• 

  Sara McLean I am dumbstruck at the awareness and funding this simple event has created, what a blessing! Beautiful photo of you both! 

  1 · August 21 at 5:59pm

The Hope-JG Foundation shared a link.

August 5

http://hope-jg.blogspot.com/2014/08/the-human-spirit-hopes-often-in-spite.html

The Hope-JG Foundation Blog: The Human Spirit Hopes, Often In Spite of What's Logical

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Lynda Donnelly Dellinger, Kenji Fujimoto, Patty Meaney Whalen and 3 others like this.
• 

  Michele Dupree Beautiful!

  1 · August 5 at 5:16pm

The Hope-JG Foundation shared a link.

July 31

http://hope-jg.blogspot.com/2014/07/got-our-first-hope-photo-for-gallery.html

The Hope-JG Foundation Blog: Got Our First Hope Photo For The Gallery!

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research.

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The Hope-JG Foundation shared a link.

July 29

http://hope-jg.blogspot.com/2014/07/team-gleason-knows-its-about-innovation.html

The Hope-JG Foundation Blog: Team Gleason Knows It's About Innovation - And Inspires It

hope-jg.blogspot.com

The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and...

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• Ted Harada, Kenji Fujimoto and 2 others like this.