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.

help button

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.

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.

 

all the glory meme

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!

Did someone say coffee?

Last year, we had a ton of breakfast goodies up for raffle and silent auction. In fact, I think the person who won the coffee for a year is still plowing through his stash of beans!

This year, the good folks at Green Mountain Coffee/Keurig have generously upped the caffeination donation. You can vie for a platinum Keurig coffee maker and a case of coffee this year!

krg-alt-b70-alt3

 

A case of coffee.  Not a pound, or a bag.  A case.  Paging Mike Oliver!

New Raffle and Silent Auction Items!

While we’re nowhere near done collecting donations for this year’s raffle and silent auctions, far be it for us to keep silent for long with all of the good stuff that’s already appeared!

On top of having some great shows (which we swear we’ll announce soon!), you can win a few different kinds of relaxing getaways! Start scheming how you’re going to win  them now! Get to dreaming…

success kid

I do not use too many memes!

Join the Maybe Sump’ms!

Links are now up on the menu for joining or donating to the Maybe Sump’ms BikeMS team! Don’t want to ride a bike in New York? Sign up to be a virtual rider, which has all of the glory and awards, with none of the sore muscles.

all the glory meme

You didn’t think I’d let a chance to add a meme to something go to waste now, did you?

Who’s in for 2014?

Check out the updated Spotify playlist to see who’s new for 2014!

2014 Planning is Underway!

Planning has begun for Crash Safely 2014!

Want to get involved? Write Us!

 

Check out some video from last year’s shows!