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by Ed Dewke
On the Psoriasis Cure Now!
web site you say that you focus "like a laser beam" on two
goals: finding a cure through research, and access to the full range
of treatments by everyone who has psoriasis. Let's talk for a moment
about the latter.
are several ways the government can play a helpful role in promoting
access to these treatments for psoriasis patients.
You mention Medicare and Medicaid — right there that is everyone
65+ as well as lower income folks younger than 65 — so these programs
are vitally important, and Psoriasis Cure Now!
will be active in
also regulates the managed care industry, giving us opportunities to
persuade insurers to reimburse their customers who need biologics.
As you know, some insurers are covering these drugs fairly, while
others are inappropriately limiting access to these treatments.
I also use the
cost of biologics in my meetings on Capitol Hill, to help us advance our
push for more federally-funded research on psoriasis and psoriatic
describing the annual cost of these new drugs to a Congressional staffer,
and watching his or her mouth drop open, it is a lot easier for me to
explain why short-changing psoriasis research is not just bad on a human
scale, it’s terrible economically.
ED: How do you think your organization's activities and mission are positioned relative to the National Psoriasis Foundation, who you once worked for? Is your program an objection to what you consider to be inadequate lobbying from NPF on the issues of research and access?
you know, psoriasis and psoriatic arthritis research have fared very
poorly over the last 10 years. Funding
at the National Institutes of Health (NIH) is UP a whopping 148%, while
psoriasis research funding is DOWN 13%.
Outrageous, and unacceptable.
is the number one reason Psoriasis Cure Now!
exists. I will not allow that
to continue for another 10 years — that is not fair to me, to my 4 and 8
year old nieces with psoriasis, or the other 6.5 million of us.
resigned as a consultant to the National Psoriasis Foundation last
October, but I remain one of their biggest fans.
No health group does a better job educating patients about their
disease than the Psoriasis Foundation.
No matter how your psoriasis affects you, you can find information
relevant to your situation. Psoriasis
Cure Now! has no intention of recreating that resource.
Instead, we are
here to be a vocal and ever-present reminder to Congress, the NIH, the FDA
and other federal agencies that psoriasis and psoriatic arthritis patients
can be ignored no longer.
advocacy is not a once a year thing, or an occasional activity.
It is a grueling, daily campaign.
But the payoff can be huge. A
single group last year got $3 million in taxpayer money for golf lessons
for a few thousand kids. 6.5
MILLION psoriasis patients got just $5 million to research our incurable
difference? The golf group was
active on Capitol Hill; psoriasis patients have not had a meaningful Hill
presence. That changed with
the launch of Psoriasis
In the late nineties, as we were completing mapping the human
genome, there was much excitement about finding a gene therapy cure for
psoriasis. Then, as the number of genes discovered to play a role in
psoriasis started to rise, we heard less and less about a possible gene
therapy cure. What's your take on this? Has the idea just been
set back, or canned, or is it becalmed for lack of funding?
Gene therapy, as a general
matter, was over-hyped for all diseases.
It could be years, even decades, away in many cases.
Scientists, like the rest of us, are human.
When they are trying to attract attention and get funding for their
work, they often exaggerate the promise or the stage of development of
their experimental ideas, and the media willingly goes along, because it
makes great copy.
one of the keys to better treatments and a cure for psoriasis is unlocking
the genetic links to psoriasis. A
dozen or more genes may play a role in making us susceptible to psoriasis;
perhaps explaining why when my wife and I both get strep throat, my
psoriasis flares and her skin is fine.
Unlocking these mysteries will be costly, but is a great place for
Congress and the NIH to step in with additional research resources.
I don’t see the biologics in conflict with this. I see this generation of biologics as first, helping a lot of people survive and live well until we understand these genetic elements better; and second, opening up additional avenues for promising research. Consider: The biologics clear some patients who have not been clear in decades (!), while doing little for some other patients. We could study the genes of every patient who clears on a biologic, and compare it to the genes of every patient for whom they do not work well. We might learn amazing things from that. Congress/NIH should be funding that research RIGHT NOW.
How is money earmarked for psoriasis research at NIH actually
spent? Does NIH award research
grants based on peer-reviewed proposals?
Assuming some significant portion of the research money pool goes
to academic institutions, do you believe or do you know if there is
significant existing interest in psoriasis research?
Do we have existing psoriasis research projects which are currently
slowed or halted because of lack of funds?
Here’s what someone who
opposes more psoriasis research funding might say about the NIH process,
along with my responses:
money follows the science. NIH
grants are peer-reviewed, and that competitive process is awarding grants
to the best science out there, which happens to be mostly in areas other
than psoriasis research. Until
they get better proposals for psoriasis research, there is nothing NIH can
do, so Congress should stay out of it.”
course, there is some truth to this, but it tells only part of the story.
First, the nature of this peer-review is a circular process —
successful scientists sit on the boards that review the proposals, and —
surprise — they tend to like proposals in their own line of work.
psoriasis researchers reach a “critical mass” and have leverage on
these boards, we will not get our fair share of grants.
those health groups who aggressively lobby Congress see their NIH funding
No. If the ‘money
followed the science,’ and political pressure played no role, then why
does every health group imaginable bring celebrities to Congress to plead
their case? Psoriasis patients
have NOT been a factor in
some of the key psoriasis research that is NOT being funded is
“clinical” research; i.e, research that uses human subjects.
Several leading researchers have told me that NIH frowns
upon clinical research, and funds it at lower rates than other types of
research. So we are harmed by
that informal policy. One
example that I find promising, and that I mentioned earlier:
studying the genes of patients for whom a biologic works, and
comparing those genes to the genes of patients for whom the same biologic
does NOT work. NIH should fund
Finally, another circular problem. While we have some great scientists working on psoriasis, we need more. But young scientists start out working in labs of established scientists. Most of those established scientists do NOT work on psoriasis (in part because it is so hard to get funding). See the problem? Once you jump-start the funding, you will get more established scientists interested in studying it, and more young scientists will be working in their labs and thus more likely to keep working in that area, etc. So an infusion of federal research funding will lead to more psoriasis-related grant proposals down the road.
Do you know if well-funded psoriasis research is going on anywhere
else? Is the
Few of us are really aware of the consequences of
government-funded psoriasis research in the past.
Has money spent so far been responsible for any of the treatment
breakthroughs in the last couple of decades?
Perhaps we all could benefit from a clearer understanding of how
government dollars spent are different from commercial (pharmaceutical)
dollars spent. Are any of the
current biologic treatments for psoriasis traceable to government funded
research at any point?
Generally speaking, the
biotech/pharmaceutical industry wants to take promising research and turn
it into a drug that they can sell to people.
Federally funded research can have a longer “payoff” horizon.
For example, there may be a dozen or more genes implicated in
psoriasis. Finding all those
genes will one day help us find treatments and a cure, but no company
could survive if they spent lots of money studying this, as the treatments
that will come from this are years and years away.
So we need federally funded research to increase our knowledge of
the disease, and then the pharmaceutical industry can use this knowledge
to develop drugs that target specific elements of how psoriasis strikes.
We need both
types of research, government and corporate.
I always say I am grateful that the pharmaceutical industry sees me
as a potential customer. The
worst thing in the world would be to have a disease for which no company
wanted to develop a drug.
As for the role of federally funded research in the emergence of biologics, let me just say I am working on this issue for a report that will eventually appear on the Psoriasis Cure Now! website, so you will have to stay tuned. But yes, past NIH research is helping psoriasis patients today. That is why it is so crucial to increase NIH funding for psoriasis research — NIH does great work! But 77 cents per patient annually is not enough.
Psoriasis Cure Now!
is actively soliciting donations to support your lobby to increase
research funding and ensure access to all therapies for everybody with
psoriasis. Can you talk a
little bit about how that money is (or will be) spent?
Yes, unfortunately, changing minds in
On the advocacy
side, annual contracts of $120,000-$240,000 are extremely common for
a website revamp — to make it look and work better — would run
$5,000-$20,000 based on estimates I have received.
And you don’t want to know how much accountants and attorneys
I’ll stop now
before everyone gets demoralized. The
good news is we have no office expenses — no rent, no toner cartridges,
no computer bills, no cell phones, etc. — that’s all covered.
And my proximity to Capitol Hill means I can be on the Hill at
least once a week working the psoriasis issue, no charge.
we will be able to do everything the psoriasis community needs in advocacy
and PR if we can raise $300,000. Short
of that, I have developed budgets at $200,000, $100,000, and even $20,000.
Simply put, the more money we have, the more effective we’ll be,
but even if we fall short on fundraising, we’re already making headway
in Congress and among journalists who cover health care.
I’m trying to
learn to ask everyone for contributions (even though I find it
distasteful). But your readers
can make a secure, tax deductible contribution directly from this page on
the Psoriasis Cure Now! web site, and any amount, be it $10 or
$10,000, most certainly will help: http://www.psorcurenow.org/contribute.php
Other than cash contributions, how can people become involved
in your lobby — inside and outside the
First, everyone can and should sign the petition
to Congress on our home page, so we can send a powerful signal to
Congressional leaders. Imagine
the power we would have if every one of the 6.5 million Americans with
psoriasis, plus just one loved one of each of us, got involved?
That would be 13 million Americans, or as I like to call us,
whenever any of your readers come to
We are also
developing a program for people who cannot make it to DC who want to do
more beyond signing the petition and doing the other items described on
our Join the
What do you think you and your supporters can accomplish in
five years? Ten years?
What are the biggest challenges to overcome?
We have several significant challenges that keep me up at
night. First, psoriasis
patients as a group have been passive for years, and may not even see
themselves as a group. Diabetics,
breast cancer survivors — these brave folks see themselves as part
of a group. We need to get
are busy, and understandably skeptical about their ability to impact
giant, remote institutions like the U.S. Congress.
But I worked on the Hill for almost 5 years, so I know firsthand
how powerful individual Americans can be, especially when they work
together. I have seen a
solitary, committed mother get federal law changed in response to
something that happened to her daughter.
Passion and persistence still count, and can still move mountains,
Third, we have
a federal budget problem that will not easily be corrected.
Over the last decade, as I mentioned earlier, funding for the
National Institutes of Health went through the roof.
Funding rose 148% in a decade, to exceed $28 BILLION annually!
But psoriasis research fell 13% during that time.
The psoriasis community missed out entirely on the biggest increase
in biomedical research funding in world history.
This is what most haunts me. Psoriasis
researchers can’t get back those lost years, and it won’t be easy to
get back the $30 million we lost along the way for research on psoriasis
and psoriatic arthritis. But
we must try.
has called for a 0.5% increase in NIH funding for the coming Fiscal Year,
which begins in October. So as
we seek a psoriasis funding increase, we are competing with hundreds of
other patient groups who are fighting to protect the gains they made over
the last decade, while psoriasis funding was being raided.
This is an extremely difficult position for us.
Back when NIH was being increased 15% every year, we could have
easily secured millions of additional dollars for psoriasis research.
But now, it
will be trench warfare to get our funding to a fair level, especially when
the federal budget is expected to run a deficit in excess of $400 billion
silver lining is that because psoriasis research funding is so tiny — $5
million annually — it can be quadrupled without even being noticed in
the federal budget, which will be about $2.3 TRILLION — with a T —
And that is my
long-term goal. We need
federally-funded research for psoriasis and psoriatic arthritis to be $20
million annually, preferably within 5 years.
That would equal about $3 per patient — still not a significant
sum, but major progress that would accelerate the pace for developing
superior treatments and a cure.
treatment access issues, they are part of broader problems with our health
care delivery system. The
tangible goal we are working towards first is to ensure that psoriasis and
psoriatic arthritis are recognized by all payers (insurers, Medicare,
Medicaid, the VA system) as the serious diseases they often are.
That would go a long way to putting us on an equal
payment/reimbursement footing with other diseases and ailments.
But none of
this will happen until people get energized, get involved, and demand it.
I’ll hold the megaphone, but I need psoriasis and psoriatic
arthritis patients to shout into it.
Cure Now! (http://www.psorcurenow.org)
Visit: Psoriasis Cure Now! (http://www.psorcurenow.org)