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January-February 2006 Briefing

Lobbying with Michael Paranzino

National Psoriasis Foundation’s Capital Hill Day 2006

FlakeHQ Interviews: Sheri Decker, Executive Liaison for international Relations & Special Projects, National Psoriasis Foundation

Amevive and Psoriatic Arthritis

Health Care Advocates of the Year winners celebrated by Psoriasis Cure Now

“Alternative Paths” by Robert Chapla and Sherry S.
 

Lobbying with Michael Paranzino

Early this past November I spent a few hours on Capital Hill (Washington, D.C.) with Michael Paranzino, proprietor of Psoriasis Cure Now! Readers may recall my interview with Michael in the March-April 2005 update.  Michael invited me, after our interview, to “go lobbying” with him.  Since I was in D.C. on other business in early November, I took him up on the offer. 

Though I’d made a couple of luncheon engagements with Congressional staffers during the 1980s when I lived in the Washington metro area and worked in the District, I considered myself a lobby newby.  This was the first time I would purposely sit down with staff people serving our decision makers and make a pitch for decisions I’m personally concerned about.  (Those lunches in the 1980s were always on behalf of employer or client.)

Paranzino was a staffer himself at one time and has maintained many of his contacts on the Hill.  (He was greeted by name by at least one passer-by during our time in the halls of the House and the Senate office buildings.)  We rendezvoused about an hour before our first of three scheduled meetings.... But I’m getting ahead of myself. 

Michael and I set the date for my visit in September.  His strategy was to get meetings scheduled with as many of the Senators and Representatives from my Kentucky District as possible.  (In the end, he arranged three meetings.)  Constituency, I learned from Michael, is a powerful advantage in the lobby game.  To begin, it helps to get appointments if you are a voter whom the Senator or Congressman represents.  In all likelihood you won’t get to meet directly with the Big Cheese, but you will meet with a staffer, and, if the meeting is arranged properly, with the staffer who is responsible for advising his/her boss on subjects that include your own.  (Two out of our three meetings were with staffers who studied and advised on medical issues.  The third meeting had been scheduled with the appropriate individual, but at the last moment someone else had to stand in.)

By mid-October our three meetings were set, thereafter Michael started sending me, as email attachments, the “material” we’d leave behind.  These included:

  • Kentucky Delegation Meeting Agenda
     
  • Psoriasis Fact Sheet
     
  • Psoriasis Research Funding Fact Sheet
     
  • NIH Research Ideas
     
  • Arthritis Bill Proposed Changes
     
  • Report Language House and Senate for FY 2006

Reads like a lot of homework, doesn’t it?  Well, you’d be surprised.  All but one of these documents were no longer than 1 page — and each one-pager had plenty of white space.  (Michael said an effective document — for our purposes — can be absorbed quickly and completely in the time it takes to read a single page.)

The Kentucky Delegation Meeting Agenda was the only document of the set intended just for Michael and me.  It said (again, 1 page) what we hoped to discuss during the meeting.  We went over this document quickly during our pre-meeting planning session.  Michael said then, “I may or may not give these documents to the people with whom we’re meeting while we are talking.  Usually I don’t want the staff person trying to read and listen to us at the same time, which is bound to happen if you throw paper at them early in the meeting.”

What was my role to be?  First Michael asked me what I wanted to address, eventually it boiled down to where we agreed I might be most useful.  The subject I spoke most about, at all three meetings, was what it was like to live with psoriasis.  Michael said, “You’d be surprised how many of these people don’t know anything at all about psoriasis.  During the entire time I was a staffer, the word ‘psoriasis’ never crossed my desk.”

As we headed for our first meeting, Michael added, “I like to hold these meetings to 15 minutes unless the staffer is asking questions.  They appreciate our respect for their busy schedules, and as I hope to be back to see them many times with other ‘delegates’ like yourself, it helps me when they remember I won’t waste their time.”

With Michael at the helm, I felt immediately at ease in all of our meetings.  Without exception, each of the staff people we met were young — admittedly, from my vantage at age 54, this leaves a wide margin of possible ages.  Young but sharp.  They listened like researchers and questioned like lawyers.  Michael was obviously comfortable among them.  He tossed the conversation to me frequently and because of his preparation I thought we came off informed, sincere and concise. 

When the meetings were finished, Michael said, “Now imagine if I had people with psoriasis — more people like you and me — coming into town several days a week and giving up 3 hours to do just what you and I have done.  Imagine the impact that would have, day after day after day.”  Eventually, word would get around that the “psoriasis front” was well-numbered, ever-present, adamant and aggressively represented. 

One of the documents we left behind us that day — the only one longer than 1 page — was “Report Language House & Senate for FY 2006.”  It contained excerpts of language that some committees had elected to include in their reports.  (The language was verbatim from Michael’s own testimony — click here.)  Michael always left this with our hosts along with his “thank you” to the House and the Senate for their strong support of more psoriasis research and better access to treatments in 2006. After which he always said — and it always made our hosts smile — “But of course, we’ll be back!”

My personal “Hill Day” was a pleasant and illuminating experience and I highly recommend it to anyone visiting Washington, D.C.  When you are working with a pro like Michael Paranzino, all you have to be is sincere.  You don’t have to be a speaker, or a salesperson or even an expert in psoriasis.  You don’t even have to know who your Senators and Representatives are (Psoriasis Cure Now! looks that up for you).  Oh — and you don’t even have to be flaking at the time.  One of Michael’s comments to me:  “You’re okay as a delegate, but not very good as an exhibit.”  This was a veiled compliment.  After nearly 10 months on Raptiva, and decked out in my suit, you couldn’t see a flake on me that day.

National Psoriasis Foundation’s Capital Hill Day 2006

Speaking of lobbying on the Hill, the National Psoriasis Foundation advocates a formal “Capital Hill Day” that brings bus-loads of flakers to town to visit their legislators and others who serve on strategic committees.  This year’s CHD is February 26-27, and the deadline for signing up is January 26.

For a great recap of last year’s CHD, read Capitol Hill Day 2005: Lobbying Congress for Support of Psoriasis, a personal recounting of the experience by the Foundation's Director of Advocacy, Sheila Rittenberg.

For more information, or to register, visit www.psoriasis.org or contact Alyssa Brown at [email protected], or call 800-723-9166, ext. 407.

FlakeHQ Interviews: Sheri Decker, Executive Liaison for international Relations & Special Projects, National Psoriasis Foundation

For a few years now I’ve been in the enviable position of hearing on a regular basis from flakers around the world.  In my natural shortsightedness I developed a set of way-too-general suppositions about what it’s like to have psoriasis. What didn’t occur to me was that flakers in many countries don’t have access to the Internet, don’t read English, have never heard of FlakeHQ and would find most of what’s contained here completely alien to their own lives.  They could tell us stories about living with psoriasis that sound like they are 500 or 1,000 years old.  This month’s FlakeHQ Interview clarifies this reality.

I’ve known Sheri Decker since 1996 — hers was the first voice at the National Psoriasis Foundation I heard.  She had a different position then.  Now she is the Executive Liaison for international Relations & Special Projects.  The subject of our interview was the “international picture” of psoriasis — it's based on Sheri’s reflections on three years working closely with the International Federation of Psoriasis Associations.  I hope you will read the interview.  Conducting it with Sheri literally changed me in several ways.  Click here to read Sheri’s Interview, or visit the FlakeHQ Interviews page.

Amevive and Psoriatic Arthritis

In mid-November, Biogen Idec (makers of Amevive) announced the results of a Phase II study to determine if the biologic drug Amevive helps psoriatic arthritis.  Amevive was approved for the treatment of skin psoriasis in January, 2003.  It was determined by the study that improvement of psoriatic arthritis (PSA) was achieved in a statistically significant percentage of trial subjects.  To read Biogen Idec’s news release on the study, click here.

Health Care Advocates of the Year winners celebrated by Psoriasis Cure Now

Michael Paranzino’s Psoriasis Cure Now awarded three legislators “Health Care Advocates of the Year.”  Recipients are Sen. Arlen Specter of Pennsylvania, Rep. Rosa DeLauro of Connecticut, and Rep. Ralph Regula of Ohio.  These lawmakers were instrumental in getting specific language about increased funding for psoriasis related research in appropriations committee reports.  Click here to read more.

“Alternative Paths” by Robert Chapla and Sherry S.

FlakeHQ’s poet laureate treats us with something special this month: a painting-poem-combo.  The painting is by artist Robert Chapla whom, Sherry writes, is releasing a book with her that is filled with paintings & poems.  (I’ll post more about that when I learn how to lay my hands on a copy.)  The poem Sherry shares with us here is not in the book, nor anywhere else — which I think makes us quite blessed.  To view and read Alternative Paths click here or visit the Flaker Creativity page.  To read other poems by Sherry, visit http://hometown.aol.com/slsheehan/myhomepage/poetry.html.

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