Advocacy Alert: Changes to CMS

Advocacy Alert: Changes to CMS


Mike: We have an advocacy alert that we wanted
to make the ALS community aware of so we have a bit of bonus content for you here
on Connecting ALS. We’re going to bring in an expert to bring us up to speed. I’m here with Marianne Keuhn, VP of Care Services at our Chapter of the ALS Association, to discuss a pressing legislative issue for the ALS community. Welcome Marianne, thanks for the time today. Marianne: Absolutely. Mike: And just to bring
everyone up to speed, back in early March The Centers for Medicare and Medicaid
Services, or CMS as you’ll often hear them called, announced that non-invasive
home ventilators, a critical piece of life support for many people living with
ALS, would be added to the competitive bidding program in 2021. This is a
problem and Marianne you always have your finger on the pulse of these
advocacy issues for the ALS community so we’ll get deeper into it, but first could
you explain for our listeners exactly what the competitive bidding process is? Marianne: Sure, so competitive bidding is where Medicare will ask equipment companies to
submit a bid on what a piece of equipment will cost. Now, normally this
can be good because it can help keep prices down. So they submit the bids and
then CMS will choose the lowest bid and ask each company to set that price so
when they are getting reimbursements that’s the price that they get
reimbursed at. Mike: Okay so on the surface, like you said, it sounds like the program
has good intentions, but tell us why adding non-invasive home ventilators to
the list will be an issue for many people with ALS. Marianne: Yeah, so sometimes
what’ll happen is if you set these bids too low, so equipment companies can’t get
reimbursed at a level that will cover their costs.
With respiratory equipment you need specialists who know how to use the
equipment, who know how to repair it, and those services are also not typically
covered by CMS so equipment companies are already kind of taking a hit to have
a respiratory therapist available for these pieces of equipment. Mike: Servicing and maintaining the equipment, sure. Marianne: Absolutely, absolutely. So, when you have a price set,
that is at a level where companies may not be able to afford to
continue to provide that product, then it makes getting access to it that much
more difficult. Mike: Got it, so adding ventilator to this
list, this process, will actually reduce access for a population that is at
extremely high risk for respiratory failure and I suppose that could
ultimately mean more trips to the ER, longer hospital stays,
fewer home care options, and then ultimately higher costs for Medicare and
Medicaid, right? Marianne: Absolutely, absolutely. It is a vital piece of equipment and being
able to access it, being able to get to a company that can repair things when they
go wrong, these are critical for people with ALS. Mike: Okay, so we know, we recognize
obviously that this is a serious issue what can we do as a community to speak
out against it, who should we be calling, and emailing, and tweeting at? Marianne: The simplest thing you can do is contact your members of Congress. You need to ask
them, there are some Dear Colleague letters that are going around that they
can sign on to that will ask The Centers for Medicare and Medicaid not to include
non-invasive ventilation in a competitive bidding process, but simply
just contact your members of Congress and say we can’t have this on
competitive bidding. Mike: Because those Dear Colleague letters, those can go a long way in an initial stages like this, right? Marianne: They absolutely can because it shows
that more and more members of Congress care about this issue, are concerned
about what impact this would have on people living with ALS, and that the more
that we can get members of Congress united behind a situation like this, CMS
will listen to us and hear those concerns and you know it can be as
simple as they can make a rule change then and this can get resolved. Mike: What exactly is a Dear Colleague letter? Marianne: Yeah, so a Dear Colleague letter is a letter
that is usually put together by a member of Congress that is sent out and he or
she is asking other members of Congress to sign on and support whatever issue
they are talking about at that moment. So, the benefit of a Dear Colleague letter
is that it creates momentum and the more members of Congress that we can get
signed on to an issue, you can collectively start pushing an issue
forward. Mike: Okay, okay, that makes sense. And I assume if people have questions about
either the message itself or how to contact their local legislators they can
get in touch with their chapter of the ALS Association for that help, right? Marianne: Absolutely, chapters are a great resource. Mike: Alright, thank you
Marianne for shedding some light on a very important topic. Marianne: Thank you for
having me. Mike: Just so everyone is aware, there is a
deadline on these Dear Colleague letters that we just spoke of that is May 31st
so if you’re going to reach out to your legislator make sure that you do it
before the end of the month. May 31st deadline for the Dear Colleague letters. One of our goals with Connecting ALS is to make sure the community is aware of
these kinds of legislative matters as they happen, so be sure to subscribe on
your favorite podcast app or at ConnectingALS.org to make sure you’re
getting all the latest content.

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