- “It's not the size of the dog in the fight, it's the size of the fight in the dog.”
- Mark Twain
Posted: November 24th, 2014
Victories over bureaucracies are rare, but this year as we enter Thanksgiving week we can celebrate one such event. Earlier this month, the Centers for Medicare and Medicaid Services announced that they had rescinded their Speech Generating Device “coverage reminder.” This ill conceived effort at cost containment would have removed reimbursement for all but the least useful devices for ALS patients. A special thanks has to go to Steve Gleason and his Team Gleason foundation for sounding the alarm and leading the groundswell of public indignation that created this reversal. A tremendous thanks and job well done also goes to each individual who made an effort to contact legislators and Medicare to oppose the changes which would have had a negative impact on the ALS community as a whole. It’s nice to know that sometimes common sense and hard work can actually come out on top.
- “Common sense is not so common.”
Posted: October 28th, 2014
The Washington Post ran an article recently focused on the fact that ALS patients may soon lose Medicare coverage for devices which help them to communicate as their ability to speak wanes through the terrible attrition of the disease.
For roughly the past 15 years, Medicare has covered about 80% of the basic cost of speech generating machines like those that many ALS patients use. We have all become familiar with them if not through personal contact, then by seeing various public figures such as Steven Hawking and Steve Gleason use them. They are a godsend for patients and their families. Today, there are many programs where patients can record a full vocabulary when they are first diagnosed and the machines will later actually speak with the patient’s own voice and inflections.
- “Courage is grace under pressure”
- Ernest Hemingway
Posted: August 25th, 2014
The ALS “Ice Bucket Challenge” is a wonderful viral campaign, which has swept the country and now the world, to raise money and awareness for ALS research. Though there were versions of the challenge previously circulating, the idea for the ALS Ice Bucket Challenge is attributed largely to Pete Frates, a young ALS patient who I have the honor to have met. You can (and should) go to Pete’s site and learn more about his amazing journey. Like all ALS patients, Pete’s story is not likely one with a happy ending, and he knows that. The odds are very strongly stacked against him, but he continues to fight, he continues to inspire and he continues to lead. Pete’s life is truly the definition of grace under pressure, and we are all the beneficiaries of his love and his courage. As of Sunday August 24th, something close to $70 million has already been raised for ALS research as a result of this awareness campaign, and I have no doubt that the awareness raised will lead to a sustained increase in much needed funding from all sources.
- “I love it when a plan comes together.”
- Colonel John “Hannibal” Smith, The A Team
Posted: August 13th, 2014
There are times in life when everything seems to go wrong; then there are those (rare, for most of us) times, when things fall into place. There is no way to understand the “why” of these times, nor the when, but we can feel it when it happens.
- “There is nothing either good or bad, but thinking makes it so.”
- William Shakespeare, Hamlet
Posted: July 30th, 2014
Shakespeare may have been thinking more of the innate nature of things when he penned this particular sentiment; but in the world of clinical trials, “attitude,” or merely what a patients thinks about a treatment can have a serious impact on how that treatment works, or doesn’t.
- …FDA has demonstrated its commitment to supporting access to experimental therapies for patients living with serious diseases
- Most men would rather deny a hard truth than face it
- I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
- Every man gotta right to decide his own destiny
- My gift is my song and this one's for you