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FlakeHQ Interviews:

Michael Paranzino

Founder of Psoriasis Cure Now!

Interviewed by Ed Dewke  
in February, 2005

 

There’s a line of classic thought questions that begin with the setup, “If you were stranded on a desert island....”  A twist on that, specific to the United States is, “If you needed to get something done in Washington, D.C., pick one thing on this list you’d most like to have:”

  • Phone directory of all Congressmen and Senators
  • A Celebrity spokesperson to accompany you
  • An unlimited entertainment expense account
  • Michael Paranzino

If you didn’t know Michael Paranzino, you might not pick him.  If you were a psoriatic, trying to get more funding for psoriasis research, not picking Michael Paranzino just might be a huge mistake.

I ‘met’ Michael when he showed up on the PsorChat message board in late January.  In his message he dropped a link to Psoriasis Cure Now! and that was the beginning of my ‘journey of discovery’ about the sad state of federally funded psoriasis research. 

Though Michael has had psoriasis for twenty years, it’s obviously not slowed him down.  He holds a B.A. in Political Science from Yale, and a law degree from New York University School of Law.  He’s done campaign ‘stints’ with U.S. Senators Jon Kyl and Elizabeth Dole.  For awhile he was a government relations consultant to the National Psoriasis Foundation.  He’s also been Chief of Staff for a GOP Congressman and a corporate litigator.

In January, 2005, Paranzino launched Psoriasis Cure Now!  The initiative is dedicated to the three generations of his family that have been plagued by psoriasis including, most currently, a 4 year-old niece. 

I interviewed Michael via an exchange of emails during February, 2005. -Ed


ED:  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. 

Of course, right now, all eyes are on the biologics — Enbrel, Amevive, Raptiva — already approved and being prescribed — and Remicade and others in the FDA study pipeline.  So far, all of these are very expensive and virtually "out of reach" of most people who are uninsured.  The pharmaceutical companies have set-up elaborate support organizations to help people obtain insurance coverage or, in some cases, to issue grants themselves to get flakers on their drugs.

Aside from Medicare/Medicaid, do you see any other role for government in helping to see people have access to these drugs? 

Paranzino:  There 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 Washington making sure these programs cover people with psoriasis and psoriatic arthritis.

Congress 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 arthritis.  After 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? 

Paranzino:  As 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.  

That statistic 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.

I 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 at psoriasis.org 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. 

Congressional 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 disease.  The 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 Cure Now!

 

ED:  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?

A related consideration:  Could all the hubbub about the biologics be stealing attention from genetic research?  If so, is this appropriate? 

Paranzino:  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.

But 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.

 

ED:  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?

Paranzino:  Here’s what someone who opposes more psoriasis research funding might say about the NIH process, along with my responses: 

“The 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.”

Of 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.  Until psoriasis researchers reach a “critical mass” and have leverage on these boards, we will not get our fair share of grants.

Second, those health groups who aggressively lobby Congress see their NIH funding rise.  Coincidence?  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 Washington , DC , and we have paid the price.  In fact, we’re about $30 MILLION short of where we would be if psoriasis research funding had just kept pace with NIH funding over the last decade.  Imagine where the state of research would be if we had had an additional $30 million over the last 10 years to advance our understanding of psoriasis and psoriatic arthritis.  It breaks my heart to think about it.

Third, 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 that research.

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.

 

ED:  Do you know if well-funded psoriasis research is going on anywhere else?  Is the U.K. , Sweden or any other country investing significantly in psoriasis research at this time?

Paranzino:   Europe and Japan have scientists doing important work on psoriasis, including studying the genetic underpinnings of the disease.  Of course, the US also has great scientists working on our behalf.  I have not yet found figures to confirm this, but I have been told that the US NIH budget for biomedical research ($28 BILLION) dwarfs the biomedical research budgets of every other nation.

 

ED:  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?

Paranzino:  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.

 

ED:  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?

Paranzino:  Yes, unfortunately, changing minds in Washington and getting media coverage is expensive.  Consider:  Sending a single press release out to the nation’s journalists via PR Newswire costs more than $600, and we should be sending out about two per month.  We’re finding ways to get the word out less expensively, but we’re up against hundreds, maybe thousands, of groups with other interests who are spending big money to get their own issues covered.  It’s very competitive.

On the advocacy side, annual contracts of $120,000-$240,000 are extremely common for Washington lobbyists, and I want to hire two to work under my direction helping me reach out to Congress, the White House, the National Institutes of Health, the Food and Drug Administration, the Centers for Medicare & Medicaid Services, the Veterans Administration, key health insurers, etc.  I simply can’t do it all myself.  Fortunately, if you know where to look, you can find skilled, connected lobbyists who will work for substantially less.  But again, the money adds up fast.

Third, 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 cost.

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.  So 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

 

ED:  Other than cash contributions, how can people become involved in your lobby — inside and outside the Washington , D.C. area?

Paranzino:  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, “voters.”

Second, whenever any of your readers come to Washington , DC on business or for pleasure, they should give us advance warning and set aside 2 hours during their trip to meet with staff for their House member and two US Senators.  We will help you arrange the meetings, provide you written materials to distribute and discuss at the meetings, and attend the meetings with you.  There will soon be a website page explaining all of this, but for now, folks can just visit the contact page to reach us: http://www.psorcurenow.org/contactus.php

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 Battle page (http://www.psorcurenow.org/jointhebattle.php), but I want to keep that stuff a surprise for now.

 

ED:  What do you think you and your supporters can accomplish in five years?  Ten years?  What are the biggest challenges to overcome?

Paranzino:  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 there.

Second, people 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, even in Washington , DC .

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.

The President 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 this year.

Ironically, the 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 — this year.

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.

As for 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.

 #####

Visit:  Psoriasis Cure Now! (http://www.psorcurenow.org)

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