Welcome to Shades of Migraine, a podcast series created by the Association of
Migraine Disorders. Migraine isn't black and white, it's blurry and shadowy but
there are many forces at work trying to change how we think about and deal with
this disease.
Today we will be hearing from Dr. Robert Shapiro, a neurologist
who specializes in headache disorders. He's also a professor of neurological
sciences at the Lerner College of Medicine at the University of Vermont.
Dr. Shapiro will be talking to us about the financial burden of migraine disease,
increasing pain research funding, Headache on the Hill and the opioid
crisis.
I'm honored to be here. t]This is a fantastic organization and it's a great
event. I'm going to speak today about the need for increased research related
to migraine and other headache disorders. There really is a huge disparity, a
huge deficiency in the amount of available funds for understanding
migraine and for actually coming up with leads towards new therapies.
I'm principally going to be talking about federal funding for research .
There are a handful of critical sources for pilot grants. This organization - the
Association of Migraine Disorders and Migraine Research Foundation have been
heroically funding small grants for some time but really the big pot of money
that we need...t he big mountain that we need to move is the federal mountain.
It really is insufficient money for for migraine research and insufficient
relative to how much we would all want which is relatively large
sum but I think the best way to think about it is relative to the burden that
migraine imposes. When people talk about burden in this context they're
typically talking about either how many people have it, how many people died from
it, how much disability it causes ,how much it costs and these are all
different ways of measuring burden. By every one of these measures except
perhaps fatalities migraine is grossly
underfunded. So how do we look at this? The principle burden for
migraine really is as disability and we're trying to align migraine funding
with how much that burden is. So for the last decade we've gone to Washington
each year in the late winter when it's cold, but
it's an important time from the standpoint of trying to influence
legislators. This was our group this year in February. We had 93 people from 33 states.
A number of people in this room were there and we visited 158 offices.
Every year we try to move the issue a little bit further along and this year I think we're making some progress.
What's the big problem? The disability problem can be shown here.
Everything you see in green is related to the disability of migraine relative to all
the other diseases that are within the neurology realm. This includes stroke
and Alzheimer's and Parkinson's and epilepsy and MS and what you see is
migraine which is the light green and medication overuse headache which is the
darker green at the bottom collectively are more than half of all the disability
that's caused by neurological diseases. Tt's grossly underestimated and
underappreciated. Everyone knows about the enormous and growing burden of
Alzheimer's disease but people don't recognize that the considerable burden
on people of childbearing age people in the workforce is largely related to
migraine. Migraine is the leading cause of disability for Americans under
the age of 50. So how do we look at migraine funding relative to this burden?
Another way to look at burden is to say, okay how much is the disability? and
how many people died from it? and how many people have it?
There's a composite number which the World Health Organization has come up with called the
Disability Adjusted Life Year or DALY. You don't really need to know exactly
how it's a how that sausage is created but every disease is assigned
essentially a burden on the basis of this. If you look
the burden which is it down here on this axis versus NIH funding you can see that
for the 68 different disorders that the NIH has analyzed which are the complete
list that they had data for, that there's a relationship between how much the burden is in this axis
versus how much the funding is and there really is a line
that can be drawn which approximates the predicted funding if all things were
being equal relative to funding and burden. Of course there are other reasons
why funding ends up coming towards diseases. You have to worry
about diseases which are emerging like Ebola. You have to recognize that when
there's a particular breakthrough funding needs to follow that to try to
capitalize on that. But overall there really is a relationship between the
amount of funding and the amount of burden. What you also see is that
lying here at the bottom, okay, the furthest away from this line which would
be drawn here are migraine and headaches. They are absolutely the most underfunded
major disorders in the entire realm that the NIH has to look at and where should
it be, you know, if you were to look at a
disorder which has approximately the same burden as migraine, you would look
at schizophrenia which is up here and it turns out schizophrenia sits almost
directly on that predicted funding line. So how much funding does
schizophrenia get as a predicted number relative to migraine? it's 14 times more...
okay, 14 times more to get to the point where you're at the predicted line
relative to the entire universe of disorders which the NIH funds. So this is
a view of the NIH data. These are the data that NIH have presented about how
much funding they've made available or not made available. How much funding of
grants that they've funded are related to migraine and headache disorders and
you can see initially when we got our advocacy efforts going there was a
notable increase and we were feeling pretty good about ourselves even though
we probably weren't responsible for this. But nonetheless, things really stalled
around 2014 and with the current President's budget
there's a predicted 20% drop in migraine research funding in 2018 assuming that
the President's budget is fully enacted. This is a major crisis if this were to
occur but another thing happened in this in this time frame which really I think
points out how we might frame or think about that the search for for more
migraine research funding and that's the opioid crisis. So the opioid crisis was
not a random event. It didn't just kind of happen. It was promoted by criminal
marketing of particular pharmaceuticals and this lit the match and we have been
suffering from this ever since. You have to ask these prescription opioids
they were prescribed for something they were prescribed for pain disorders and
it's not uncommon for people who have migraine to be prescribed opioids.
They're typically ineffective for migraine and they often make the problem
worse, but nonetheless it's a common common problem both in the emergency
departments and among primary care providers. So in recognition of this and
recognition of the idea that if research had come up with remedies for pain,
including pain disorders such as migraine, which rendered opioids obsolete
this match might never have been lit back in 1996. This is pain research
funding by the NIH and you can see it's essentially been flat for as long as
that. They've been reporting these numbers except for this projected
20% fall if the President's budget is enacted and is that enough? Let's think
in terms of amount of pain research funding versus its burden. The World
Health Organization doesn't have a little dot on that scatter chart for
pain but we can ask relative to what we know and has been calculated for the
cost of pain, chronic pain, in the United States. We can compare that to other
disorders and what we see is this pain by far is absolutely incomparable by far is the most
costly single health problem we have and migraine is bundled into that. It's the
only disorder where you have to think in terms of major fractions of a trillion
dollars a year. This 600 million probably six hundred billion dollar amount
for pain is undoubtedly an under estimate. There are all sorts of other
sources of costs for pain. For instance, people in prisons and in the military
etc which are not calculated in this, if you can add up the cost of heart
disease and cancer combined it's less than the cost of pain each year and
relative to the amount of NIH funding how much funding comes to pain you saw
in the previous slide that it's about a half of a billion dollars a year which
is a huge amount of money but is it enough relative to its burden? What we
see is that cancer relative to its costs is about 30 times more funded than pain
so what have we been working to do about this well fortunately we have some great
allies in Congress last year and you'll hear a little bit more about this when I
introduce senator Whitehouse. There was a critical piece of legislation to help
combat the opioid crisis called the Comprehensive Addiction and Recovery Act
called CARA and with the wonderful and huge efforts of Senator
Schatz and Senator Hatch we were able to help include in that bill this piece of
legislation, these provisions, which direct NIH to focus on increasing pain
research to find leads towards new remedies which are not addictive. In
particular in here it's mentioned that the relative burdens of individual
diseases, medical disorders to be regarded as crucial considerations in
balancing the priorities of the federal research portfolio. Now since migraine is
on that map as being the most underfunded disease relative to burden
we believe that this legislation, should it be fully funded, will lift all the
boats including migraine research. Included in that is this language which
came out in last year's appropriations bill which specifically directs
NIH to focus on the burden of disease, okay setting priorities, and the burden
disease, and the appropriations committee supports a focus on conditions and need
of further funding such as chronic pain including migraine and other treatment
alternatives for chronic pain. So Congress is focused on this and it's
time to actually make some progress with them. Here's some recent
developments, by recent I mean in the last month, things that we should all be
excited about which suggest that there may be some important movement despite
all of the headlines, all the things you read on the front page or the the first
thing that comes up on Google News, so some of these are a little arcane but
they're really important. In May the NIH established a specific group a study
section to review migraine research grants and pain research grants. This is
the first time it's been possible to have a relatively level
playing field for grants to be reviewed at NIH. The NIH director Collins and
National Institute of Drug Abuse director Nora Volkow wrote an important
piece in the New England Journal that came out on June 1st which says we
cannot hope to prevent opioid misuse and overdose without addressing the
treatment needs of people with moderate to severe chronic pain. So this is the
most important voices at NIH linking this issue of the opioid issue, opioid abuse
and the opioid crisis with the pain crisis. Further on June 7th, 73
organizations including this organization co-signed a letter to
Governor Christie, who is leading the President's Commission on combating drug
addiction and opioid crisis, and states a long-term solution to the opioid crisis
will only be achieved by addressing inadequately treated pain. There's
consistency here. Furthermore Matt Gold who is a colleague and friend who is a
delegate at the American Medical Association was able to get the American
Medical Association to resolve this year this particular resolution that our
AMA advocate for current legislation that will increase funding for basic and
translational pain research. On June 15th at a congressional briefing the
neurology director Dr. Cora Schatz
recognized this issue about the underfunding of migraine research and
headache research but saying actually the worst is headache the biggest
disparity between the prevalence the amount of NIH money that goes in. So
they're aware of this. Finally, only yesterday, before the health
appropriations committee Senator Blunt, who is the chair that subcommittee which
actually has jurisdiction over the NIH budget, indicated that they intend to not
actually make these cuts. This is remarkably welcome news. So the
President's budget proposes NIH cuts that rest assured the committee will
find unacceptable and I think the most exciting thing is yet to come
which is that Senator Schatz and my Congressman Peter Welch
we have drafted legislation that hasn't yet been introduced to actually create a
stop pain initiative. You've perhaps heard about precision medicine and the cancer moonshot.
These were innovation projects in this big piece of legislation last year. While they're proposing a new large piece of
legislation focused on paying and the first bit of that will be a hundred
million dollars for next year if it comes about. So with that thanks very much.
In our next episode, Dr. Richard Bolles will be talking to us about
comorbidities, cyclic vomiting, abdominal migraine, opioids and the ER, genetic
testing, mutations in DNA and mitochondrial genetics.
Thank you for tuning in to Shades of Migraine.
For more information about migraine disease please visit migrainedisorders.org