MS


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.

 

 


A little too quiet..

It’s been fairly quiet here at Crash Safely this year, if you haven’t noticed.  So what gives?

A few things, actually.  There are really only two people behind the scenes at CS, and we’ve been doing it for five straight years.  I’ve pretty much given up my birthday for that long, so the selfish part of me would like it back (thank you very much).

Maybe not quite like this.

Maybe not quite like this.

The other thing is that I have been editing videos for the Boston Symphony Orchestra’s Casual Fridays series, and the first one happens to fall on a night I would usually book for Crash Safely. I essentially double booked myself, six months in advance.

 

By the way, you should totally go to Casual Fridays- ticket prices are reduced, there’s free food before and after, and you can mingle with orchestra members. If you sit in the “tablet” seating, you can see my work.  (You can subscribe to Casual Fridays, too!)

While I’m doing that, the Night Ridah has been called back into drumming duty with Shiny Beasts. They’re playing a ton lately, but if you haven’t seen them yet, here’s a taste:

 

Also, The Figgs are on tour! With mighty team captain Pete Hayes out with the Figgs, the Maybe Sump’ms won’t have enough time to train for the ride, let alone get the shows together.

The Figgs

So, while we won’t be seeing you for Crash Safely this year,  come see us! I think we’ve got a wide variety of options to choose from- see you soon!

 


Did you know?

The Maybe Sump’ms already rode around NYC last weekend, but you can still donate! In fact, we could really use the help! Keep in mind that 100% of the proceeds from Crash Safely also go to same pool and help fund crucial research into MS, patient assistance programs and fellowships for MS specialists.

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In fact, ECTRIMS (the European Committee for Treatment and Research In Multiple Sclerosis) just ended and highlighted some major research breakthroughs, including:

  • “NEDA”- No Evidence of Disease Activity as a standard of care for people with relapsing forms of MS (This has NEVER been an option before!)
  • High dose Vitamin D improving cognitive function in MS patients
  • The effect of melatonin and seasons on relapses
  • Still in clinical trials, Ocrelizumab may be the most effective MS drug, even in hard-to- treat Primary Progressive MS

THIS is where the funds go from Crash Safely. THIS is why we ride, why we play.


Some hard truths.

Where to start? By now, I’m usually just reiterating all of the lineups, prizes and dates, but I haven’t been posting anywhere near as often as past years.  What gives?

Honestly?

This is hard for me to admit to myself, let alone type and share with whomever out there wants to read it.  While I have been working mainly for myself, I’ve essentially stitched together a grand total of 4.5 jobs, just to keep some sort of steady income.  This has meant I’ve had less time for things like Crash Safely, but also things like taking care of my never-simple medical issues.

I’ll tell you when you ask that I’m well, because I’m better than I have been, but the reality is that I am scared.

A contract position I currently have that ends in January may jeopardize my ability to afford health insurance. I’ve already been threatened with termination for income amounts.  None of the other 3.5 positions are able to offer me a stable, full-time, benefits-eligible versions of the positions I currently have within their organziations.

Contact positions I’ve held in the past year that were “temp-to-perm” became terminated once the dreaded discussion regarding my MS treatment goes from “talk” to something supervisors actually have to deal with and schedule around.  It’s always “fine” in theory, but in practice becomes an “issue” that no one seems to want to deal with.  Best just to get rid of the person who could potentially raise everyone’s premiums by simply accepting that full-time offer, right?

This has been my reality for the past year or so. The safety nets that are available are very slim and I often make “too much” to qualify for assistance, or am “not disabled enough.”

The person who can’t sleep and can’t feel a good third of their body on a good day isn’t disabled enough.

The person who exhausted their unemployment makes too much money.

I have no family that can assist me. I have no safety net; when I fall, no one will catch me. I know this because I have been in positions in the past where I had no money and nowhere to live.  Thankfully, I had access to places on my college campus that allowed me a method of survival. (Living in a radio station office is, by the way, not very comfortable.)

 

I put on a brave face every day, especially at that contract job.  It’s not my co-workers’ fault that I’m in this situation, and they don’t need to be burdened with this.

The very real possibility of being told that I make too much money for my current premiums could mean an end to the MS treatment that has kept me stable for years.

“Stable.”

I lost my ID for that contract job yesterday and I don’t know how or where.

Unless you have a unique name, chances are very good that I will forget it if we meet, even if we have many great conversations.  I may also not recognize you if I haven’t seen you in a while and we are acquaintances, not close friends.

I can no longer sleep unassisted.

But I can walk.  I can write.  I can type.  I can use a fork and a knife.  These were all things I couldn’t do in 2009.

When the humidity rises (which happens in the winter and the summer), I am reminded of these things. It’s harder for me to walk and use my hands.  It’s harder for me to think.

I have to play endless phone tag with durable medical equipment suppliers, health insurance companies, hospitals, doctor’s offices, pharmacies and others. It’s tiring and hard to keep them all straight.  None seem to have after 5pm hours, and I do not have any privacy to take these calls while at that contract position. As a result, I take these calls outside- literally.  I’m standing on the corner on Mass Ave, on hold, hoping to resolve yet another problem, hoping the hold music isn’t eating away at my allotted “anytime” minutes on my cell and that the alcoholic on the corner, toasting me with his nip bottles, doesn’t take my appearance outside as a sign we were meant to be together.  Again.

Back inside, regardless of the outcome of the call(s)- big smile.  Don’t ask, don’t tell.  Nothing to see here.  See you tomorrow.

Repeat.

Maybe I should say I work 5.5 jobs.  It’s full time work, sorting all of this out.