planning


MA House Docket 2060

Well, that certainly doesn’t sound like a band name.  Neither does “An Act promoting continuity of care for multiple sclerosis treatment,” but that’s what I’ll be talking about here.  In Massachusetts, State Representative Sean Garballey (D-23rd Middlesex County) reintroduced this bill today in the State’s House of Representatives.  It needs a co-sponor or twelve.

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So, what’s in this bill?  Well, first of all, this was originally introduced prior to the outcome of the Presidential election (remember how I used the word “reintroduced”).  This bill fills in some serious coverage gaps with regards to MS disease modifying therapies (DMTs).  If you have MS (or know someone who does), then you’re probably aware that these therapies are not cheap, even with insurance. There’s a long, long list of reasons for that, but for the sake of sanity, it’s sufficient to simply point out that a majority of MS DMTs are biologics and need to be created/grown in a lab, and that takes time, training and a good deal of money.  They’re not drugs in the “generic Tylenol” kind of way.

We know that health insurance companies don’t like the word “expensive.” You’ve likely heard horror stories of cancer patients being dropped by their insurance carriers for being just that.  Some other things insurers can do is limit your treatment options, and there are some that are trying to do just that in MA. This can mean that if an MS patient gets a new job with new insurance, they could be forced to change their MS treatment, based solely on the formulary of their new insurance plan.  This is dangerous and ultimately, far more costly in the long run. In more technical terms:

“This legislation will ensure that insurance coverage for MS disease-modifying treatments is not interrupted due to non-medical insurance policy/formulary decisions.  This bill also provides that the continued coverage for the MS treatment (outside the formulary) shall not be subject to any greater deductible, coinsurance, copayments, or out-of-pocket limits than any other disease-modifying prescription drug for multiple sclerosis provided by the insurer.” –Jake Krilovich, National MS Society

Simply put, it’s a state law that would bar insurance companies from forcing MS patients to use DMTs that don’t work for them. It also bars insurance companies from essentially discriminating against an MS patient by slapping them with higher payments for their disease modifying therapy.

Want to help make sure this is passed, especially seeing as the ACA’s pre-existing conditions laws are being dismantled? Here’s what you can do.

If you live in Massachusetts

  1. Find out who your state (NOT federal) Senator and Representatives are.  If you’re not sure who they are, check out www.wheredoivotema.com.
  2. Drop them a line- call or email and ask them to support HD 2060, “An Act promoting continuity of care for multiple sclerosis treatment.” If you happen to have a personal experience with MS, go ahead and tell them.
  3. Drop Sean Garballey a line and thank him for introducing the bill.
  4. Do it again in a week or so if you haven’t heard back.

If you don’t live in Massachusetts

  1. Drop Sean Garballey a line and thank him for introducing the bill.
  2. If you think his bill would be something your state should introduce, call your state reps and see about getting them to draft a similar bill to Sean’s.
  3. Email MA reps for friends and family members who reside in MA. You’re not a resident, but you’re related to one, and they may listen to you as a result.

 

What happens for this year in terms of shows is up in the air, but at the very least, this is one thing we can do to make the world a slightly less dark.

 

 


New Prizes for 2015!

Meet some of our first time Crash Safely donors!

The A.R.T. has donated two tickets to The Donkey Show at Oberon!

Boston Harbor Cruises has donated a certificate for four to take the USS Constitution Cruise!

The Boston Red Sox have donated an autographed baseball, signed by Dustin Pedroia!

The Charles Hotel has donated  a one night stay for two at the hotel, including breakfast at Henrietta’s Table!

A set of adult passes to the  Top of the Rock observation deck at Rockefeller Center, NYC!

In addition to our new prizes, we also have heard received these great donations from some of our returning sponsors:

The New England Patriots have donated an autographed football, signed by Jerod Mayo!

A specially selected bangle set from  Alex and Ani!

Two tickets to ANY ArtsEmerson performance in the 2015-2016 season!

A gift card for Grafton Street/Russell House Tavern/Temple Bar/Park!

Two chances to win 6 lbs of whole bean coffee from Green Mountain Coffee Roasters, including a specially selected set by Mike Oliver!

An after work pool party for 20, snacks included at Jillian’s Boston!

Tickets for two on the NY Skyride in the Empire State Building!

$20.00 in Red Box one-day DVD rentals!


When will we hear who’s playing?

So, what’s new with Crash Safely? It seems like I haven’t been teasing you as much this year with updates and news, and there are a few reasons for that. So  I’ll  bring everyone up to speed.  Sound good?

no spoilers!

Hint: This guy’s not playing any of the nights.

Q: OK, so who’s playing the shows this year?

A: How does this sound so far? The Luxury, Watts, Gene Dante and the Future Starlets, Muck and the Mires, Fireking, The Phil Aiken Army, The Sprained Ankles, Township, Gymnasium, Tom Baker and the Snakes and White Dynomite.  I’m still working out some other folks and who’s going to be playing where, when.

Q: That was my next question. When is this? 

A: Don’t worry, it won’t happen during Boston Calling, but there will be a date in mid-September (either 9/18 or 9/19), 10/17, 10/23.

Q: What’s the holdup? You’re usually letting me know all of the details by now.

A: Well, it’s a few things.  Some of it has to do with scheduling, but most of it has to do with my work.

Q: So, you weren’t working before?

A: No, I just wasn’t working for myself  before. Time is tight when you’ve got multiple clients and multiple deadlines.  I had a few desk jobs before, and that allowed me to sneak some CS work in between  bouts of unyielding depression  tasks.    I’ve also picked up managing the social media for the Midway Cafe, and just scheduling those posts can take quite some time.  Yes, I’m the person tweeting coffee memes at you every Monday.   #sorrynotsorry

I’ve also had some more medical issues I’ve needed to take care of, and that means scheduling, haggling, and generally taking on a third (fourth?) job as a professional patient, essentially. That’s another reason I’ve been working for myself.

Q: Oh.

A: That’s not a question.

Q: What venues will these shows be at?

A: I’ll confirm our definite dates:  September will depend on a few  particulars.  10/17 is at the Midway Cafe. 10/23 is at the Middle East Upstairs.

Q: Can I dress up for the 10/23 show? That’s like, almost Halloween.

A: Go for it! Actually, if you do, swing by the raffle table and we’ll give you two free raffle tickets.  Maybe more if you manage to rock a perfect replica of Immortan Joe and/or Toecutter or an actual, classic Jem character.

Yikes.

Maybe even more if you manage the combo.

We shall not speak of that horrific live action trailer.

We shall not speak of that horrific live action trailer.

So there’s been a lot of things going on way behind the scenes. I’m hoping to have the lineups announced soon (it’s seriously very close).  After that, it’ll be back to the usual bombardment of show/band/prize/MS information.

I also promise to grab some pop culture references that are younger than 20 years old for the next blog post…

 


More things to win at Crash Safely this year!

Normally, around this time, we’re already busy telling you who’s playing Crash Safely, as well as where  and when those shows are happening.  We want to make our 5th anniversary special, though, so we’re keeping a tight lid on who’s involved this year for a little while longer.

Oh, that's a bit harsh.

Oh, that’s a bit harsh.

That said, we’ve already heard from some of our donors regard raffle and silent auction prizes!  Get a peek at who’s already donated prizes  and make your plans for how you’ll win them this fall.

We’re also going through some photos from all of the past shows to share with everyone.  Did you happen to take photos at any of them and want to share with us? Get in touch and we’ll be happy to share your amazing photography/videography with the universe! We have very photogenic bands at these shows, after all….

The In Out

Even when they’re not looking at the camera. Photo by Mick Murray.


Prepping already!

Coming back from the BikeMS awards dinner is always energizing, as is MS awareness week  month. We’re still in awe of how much better we did this past year!   Things are rolling along, and we already have some stuff in the works with places and people, but as always, we need to know what you’d like to see! Because this poll doesn’t allow you to choose multiple things, we’re allowing you to vote as many times as you wish, so if you’re still really bummed you missed out on last year’s Les Paul Future Tribute, here’s your chance to speak up and let us know to ask vendors for more things like that.

 

 

Know of any companies that you think would be a good match for us?  Comment on this and let us know!

Thank you for your help!