P J Leary
National Psoriasis Foundation Support Group Leader
Founder of “NCPEAS”
Advocate and Counselor
Founding Member of the E Team

 Interviewed by Ed Dewke
in October 2008

P J Leary is one of those people who has lived through the worst psoriasis has to offer and has turned her experience into a passion for advocacy. Her “grasp” of psoriasis is broad both intellectually and experientially. She knows her stuff — because she's lived it, she's studied it, she's written about it and she's taught it. She works within all scales: one-on-one with those she counsels, in small groups as an organizer and leader, and nationally, as a leader, spokesperson, teacher, collaborator, advocate and fundraiser. Personally, she has endured just about every assault psoriasis can make on a human; she's been through the full litany of treatments, reacted badly to some, but still looks forward to new drugs and therapies. She's not an “I-had-that-once” friend of the afflicted, she is one among the tortured, supporting as many of us as she can along the way, but struggling to survive with everybody.

I heard about P J Leary several years ago; finally got to sit down with her at this year's National Psoriasis Foundation Annual Meeting (August 15-16, Orlando). The colleague who had recommended P J for a FlakeHQ Interview said, “She's working in a kind of quiet task force helping people with really bad psoriasis....” Sometime later, I heard the expression “E Team” used in conversation without being defined. That's about all I knew until this interview. I'm not going to ruin your own discovery of the E Team other than to say it could mean extreme advocacy. Probably the most potent peer-to-peer support I've ever heard about. If you are a flaker, and you read this interview with P J Leary, you will be able to say, “There are people like me who move mountains.” And you won't be stretching the truth at all. -Ed

*****

DEWKE: Tell us about your own case of psoriasis. 

LEARY: I first developed psoriasis skin disease when I was 16. It was a severe guttate presentation that changed to plaque within two months. At that time I was being seen at Massachusetts General Hospital (MGH) in Boston, and my BSA [involved Body Surface Area] was determined to be 85%.

In retrospect, it is clear this initial outbreak, as well as many other subsequent episodes, were most likely due to an undetected strep  infection. The connection between atypical presentations of strep and guttate presentations wouldn’t be discovered for another 10 years. Over all, there is no type of psoriasis I haven't enjoyed. Those include guttate, plaque, inverse, Palmo-plantar pustulosis, and (my absolute favorite) erythrodermic.

In 1978, during my senior year in High School, I was involved in the PUVA trials at MGH. It was determined I had a very difficult time tolerating the psoralin [PUVA = psoralin + UVA light], so I was switched to UVB therapy after the first month. Unfortunately, I lost about 15 pounds that month, weight I could not afford to lose. The UVB did curtail the skin symptoms. While I never became clear, I was able to achieve a thinned out 20% BSA. That same year I was diagnosed with psoriatic arthritis.

From that time until now, I’ve used the following treatments with varying degrees of success:

• Natural UVB/salt water therapy (while I lived in Hawaii)

• Clinical trial with U of Ohio for topical shark cartilage (worked fairly well except for the months when I got the control medication)

• Every topical therapy available, including short contact anthralin

• Goeckerman regimen

• Methotrexate, both oral and IM injection

• Cyclosporine

• Acupuncture & various diets and supplements (including fish oils and evening primrose oil)

• Retinoid therapy combined with UVB (post child bearing years)

• Enbrel (in combination with UVB)

• Remicade (at one point in combination with Enbrel & UVB)

• Humira (also in combination with cyclosporine recently)

• Psychotherapy

During my childbearing years I was very conservative about the treatments I was willing to try. Since my disease has always been so severe, yet I wanted to preserve my reproductive health, there were many treatments suggested to me that I would not agree to as a younger woman. For many years, beginning in 1991 I was an annual patient at the Mary Hitchcock Clinic at Dartmouth University in Hanover, NH. Goeckerman regimen would clear my skin disease completely as long as I could manage to stay inpatient for 21 days. That took exceptional planning and coordination because I was a wife, mother, and businesswoman. Oh, I forgot to mention I was on a constant rotation of antibiotic therapy beginning (I think) around 1987, in addition to whatever psoriasis therapy I was using.

I remember the first time I was admitted at MHC [Mary Hitchcock Clinic at Dartmouth]. I had been evaluated, in the typical hospital gown, by a group of doctors and interns. After I got dressed again, the doctor came in to see me (my husband was there with me). He asked if I had any idea about what my current BSA was, and I said I thought about 80%. I recall he shook his head sadly, and quietly informed us they had determined I was at 99%.

I was the last patient ever treated at that clinic when, in the late '90's, insurance companies had determined severe psoriasis did not warrant inpatient treatment. While my dermatologist wanted me to be treated inpatient for 21 days, my insurance company reluctantly agreed to pay for 4 days.

In 1990, my dermatologist suggested I get a home UVB unit, and wrote a prescription for one. My insurance company denied. For an entire year I drove 30 miles each way, 5 days a week, to get UVB treatment in his office. At the end of that year, my dermatologist wrote a lovely thank you note to the administrators of my health insurance plan, informing them of how much his practice had billed for my UVB treatments that year and mentioning the cost of the unit he had suggested. The following week, a UVB unit was delivered to my home, co-payment waived.

More recently, my worst erythrodermic flare occurred in May of 2003. At that time, I had visiting nurses in my home twice daily to assist me with everything from bathing to medications to eating. They were here for 3 months. I was blessed to have my community come to help my family during all of that. They cooked, cleaned, and drove my children to activities.

[Please take a moment to watch this short video. (High speed Internet connection recommended.) –Ed]

As I stated in this video, I decided it was time to consider some potentially riskier medications. I was aware of the first TNF-a medications, but there had been, as you may recall, a waiting list for those folks who were self pay. No insurance companies would cover them for several years. Enbrel (etanercept) was so successful in managing both psoriasis and psoriatic arthritis, Amgen (based in MA), had to raise capital in order to expand sufficiently to meet patient demand.

In August, 2003 I began using Enbrel. I found it was amazing for controlling the symptoms of the PA, less so for the skin disease. However, I did see about a 75% improvement in my PASI score. Then again, it is important to know my fabulous research Doc at Duke likes to say, “PJ, you are not exactly a stable psoriasis patient.” That fact gets me treatment from the best and smartest, but my disease is in fact very severe and unpredictable. In any case, I used Enbrel until it stopped working entirely at the 18 month mark.

Because I believe in patient driven care, my next choice was Remicade. I combined the loading dose with UVB and found myself completely free of skin disease, with the arthritis well managed after 5 months of treatment. I remained that way for 24 months. At the time, I saw diminishing results, even after adjusting the dose. Then, a really bad thing happened. During my regular infusion this past January, I contracted a cellulitis infection. That infection had doctors discussing the potential amputation of my right arm, and had me in the hospital 5 times between the initial episode and April.

It was determined the Remicade was a catalyst for the recurring cellulitis infection, so I stopped that therapy. The only other biologic available to treat both diseases was, of course, Humira. I began treatment in July and it seemed during the loading dose phase that it would be very helpful. However, it has not worked well for me. After [the National Psoriasis Foundation 2008 Annual Meeting] in August, I returned home and found myself fighting off an impending erythrodermic flare. My fabulous doctor at Duke and I decided to add 300 mg of cyclosporine to the mix for 45 days. It did the job of reducing the inflammation and the very painful Palmo-plantar pustulosis, but once again I lost about 5 pounds. Cyclosporine makes me feel very ill and I have a hard time holding down food. It also causes a sharp increase in my blood pressure, which is worrisome.

I have an understanding with my fabulous Duke doctor that I will be in his office the day after CNTO-1275 [maker Centocor, Inc.] is approved, No appointment required, Mrs. Leary. I have now had psoriasis for 32 years.

DEWKE: Do you have a lot of family history with psoriasis?

LEARY: My father has a strong family history of psoriasis. Dad's grandmother and father both had severe disease, as do he and I. My mother had a case of what she described as “sympathetic psoriasis.” In fact, she had mild disease, elbows, knees, and scalp.

I have three siblings, and only one has psoriasis. My brother has had psoriatic arthritis since he was about 20, and mild Palmo-plantar pustulosis (feet only).

Unfortunately for my own family, my husband developed very mild psoriasis a couple of years ago. We have two children together, so the risk factors increased. Of my four children (the older two only have one parent with disease, me) three have had episodic strep induced guttate flares. One had her first issue at 8, one in her early teens, and one as an adult. Fortunately, we know to treat the asymptomatic strep immediately, and they have never required any treatment other than mild topicals and antibiotics.

So far both of my grandchildren have been free of psoriasis.

DEWKE:  Returning to the treatments you've tried, for a moment: You've personally experienced a lot of drug-related “adverse events,” haven't you?

LEARY: Psoralin makes me vomit uncontrollably. I actually had a doctor tell me once when I was in my 30's that I really did not want to have success with treatment when I refused UVA therapy and insisted on UVB.

Methotrexate makes my cholesterol go over 1000, gives me migraines, and makes me vomit. (I have perfected the system of taking a Compazine suppository, then eating, then trying to nap all the while hoping I won't awaken while vomiting.)

Many UVB burns until I learned to set the machines myself.

Cyclosporine is no better than methotrexate for side effects.

Then there is the part about trying not to die or lose important body parts. (See above concerning erythrodermia and my battle this year with cellulitis.)

Unlike many psoriasis patients, I am constantly working on gaining/maintaining weight. Today I am 10 pounds lighter than my target weight. Since my immune system is so compromised, this is a serious issue for me in the event I catch a cold or the flu.

DEWKE:  You are a well-known advocate in North Carolina and the rest of the country.  How did you initially get involved? 

LEARY: It all began at the Hitchcock Clinic at Dartmouth decades ago. A boy aged 11 was admitted to the clinic; both he and his parents were frightened to death. His parents had done their research and learned the Clinic experience was the best treatment choice available at that time. The parents were well educated, but did a basic “dump and run” with their son. The parents were obviously put off by the patients walking around “in tar.”

The Doc asked me if I would be willing to try to talk to this boy. I was the only mother female in the clinic at the time who was of the appropriate age to perhaps be his parent. I was barely 30 then. It took several days to get him to talk, but eventually he did. That experience got me thinking about the many plights of the patient community.

When I arrived home from that very treatment, I saw a young dermatologist who asked for my opinion on the program at Dartmouth. I mentioned to him that I had encountered an elderly lady who had only negative experiences to share about her time there. He told me that when folks are diagnosed with a chronic disease like severe psoriasis that is so painful, they take one of two approaches. They either become insular and bitter, or they become the very finest version of themselves.

Those events, with the boy and the young dermatologist caused me to define how I wanted to serve this patient community.

I was raised to feel an obligation to give my time and resources to the community. With the psoriasis patient community, I had something helpful to contribute.  

 

DEWKE: You use the expression “plights of the patient community.”  What do you think are the most important plights our community faces these days? 

LEARY: I would say there are three issues I hear about from the patient community both here in North Carolina and on a national level. They are as follows:

a. Access to care, including how to pay for medicine that works
b. Discrimination both in the workplace and the community (e.g., the pool)
c. Access to services, which might fall under self-esteem to some extent. Consuming personal services, like manicures and haircuts, is stressful.

DEWKE: I think it would be fair to call you an “advocate's advocate.” You've been at this long enough, and been successful enough, for others interested in becoming involved to look to you for leadership and direction. What are some of the ways the rest of us can get started?

LEARY: I think the best way others can get involved to begin with would be by participating on the National Psoriasis Foundation message board forums and connecting with other leaders through those forums. I would also suggest talking with staff at the Foundation about what exactly one might be able to do. There are many opportunities. Taking on the opportunity to do some medical or political outreach is a wonderful way to begin to make headway in any community. I would also like to mention that I make myself available for one on one consultation all the time. I can't tell you how often I hear from folks that they don't want to “bother me.” Please know that I want to be bothered. All I ask is that we make an appointment for our conversation.

 

DEWKE: Do you think our current health care business in the United States is “flaker friendly?”  If not, what do you think needs to happen and how can we work to make it happen?

LEARY: Health care and psoriasis, loaded question there, Ed. I can tell you what my groups and I are doing. We understand that this is a time of potentially huge change in how health care is administered in our country. As a result, here in Raleigh, we have a big meeting planned for the Monday after the national election where we'll be talking about these issues with our local politicians. I know access to care has been the most important issue in our patient community for many years, and I have been pleased to be involved in making changes in our favor. I think the jury is out on this issue until we know which party will be leading our country.

To answer the question, though, I know for a fact our current system is not at all friendly to psoriasis patients. I can't tell you how many times I have fought with insurers for appropriate care for myself and for others. I recall the last time I went to Dartmouth: my insurance company pre-approved the admittance. Then the day I was scheduled to go, they pulled the approval. They said I should seek specialized nursing assistance closer to home (I was in Southern Maine then). I said “Fine, please tell me where to go.” I already knew there were no derm beds in Boston. They got back to me later that day to let me know they were still going to deny even though they couldn't find any derm beds closer than Hanover.

Understanding the process, I asked for a medical review. I was well aware this meant my insurance company was required to convene a panel of specialists, in this case dermatologists, to make a recommendation. I also knew the providers were mad and frustrated with the cuts on care for their severe psoriasis patients; cuts everywhere, from UV therapy to inpatient care. Of course, the panel determined a patient with unstable disease and 90% BSA should be treated inpatient. The following day, I drove to Hanover, a four hour trip for me. By the time I got there, the insurance company had decided to pull the approval once again! I got on the phone, but was only able to get approval for 4 days.

DEWKE: At FlakeHQ we've heard from quite a few parents of “P-kids.” Obviously, the relationship between parent and child is always individual and unique, but what general guidance do you give when parents who are not psoriatic find out they have a child who is?

LEARY: The very first “other message board” that was created when the National Psoriasis Foundation was young on line was the “Family and Caregivers” board. I had been the administrator of the Psoriasis Board at Parent's Place.com for several years, and when the National Psoriasis Foundation got on line, I brought my members there. I have been a firm and vocal advocate for our youth for a long time. As a parent with three children experiencing psoriatic disease issues, I understood the issues faced by families. I am proud to say this year Raleigh held the first Family & Children  Support Group event in the country. That meeting was held in September. We did a big presentation at my favorite spot, the Hilton, complete with unique slideshows and a nice luncheon. We had the “kids” in with the adults for the beginning of the meeting, then I split them out to a room next door with our Youth Leader. They joined us an hour later for lunch, then broke out again. At the end of the meeting, I had a mother approach me obviously wanting the opportunity to chat. I swear to you that this woman stood in front of me, and as she began to speak, she burst into tears. I gently led her out into the hallway and offered her a hug and a tissue.

This woman said that she was so grateful for the opportunity to learn more, from a reliable source, about the disease her son suffers so terribly. She had become frustrated trying to get him the appropriate medical help. However, she did have an appointment for him at Duke the following week with our fab Doctor M, and she felt prepared to make good choices after listening to our presentations and talking with other patients and parents.

Here in North Carolina, as advocates, we have been working with families throughout the country for many years. We have the only Foundation-trained youth leader in the country. We have a well established method of helping these families, and our tracking records are impressive. My daughter Deirdre was responsible for the majority of the program for Youth at the 2008 National Psoriasis Foundation Annual meeting this year. She did a phenomenal job. That was her own work, I had no involvement, and it was rated as exceptional.

At the end of one day at the Foundation’s Annual Meeting this year, both Deirdre and I had made presentations, ones we were both a bit nervous about. Both were received very well. We had a Mom/daughter moment sitting outside (so I could smoke). What my daughter said to me that caught my heart was this: “Mom, it was better than I had imagined, but what is really exciting to me is now I know exactly how I want to do this in North Carolina!”

I cannot over-emphasize how important it is to appreciate psoriasis as a family issue. And I don’t mean just among those of us in families with numbers of individuals who have the disease. It’s just as much a family issue when only one has the disease, though the experience and issues may be different.

DEWKE: What are your current goals in advocacy?

LEARY: We have come far as a patient community in the thirty-plus years I have been a patient. Certainly one of the most important changes has been the advent of biologics. However, we have also benefited greatly from the communication the Internet and World Wide Web provides. While I have enjoyed the opportunity to expand services in my home state of North Carolina, I have also been able to do so nationally by working with the National Psoriasis Foundation.

My goals today are very different than they were just a few years ago. This is such an important time for our community to have a voice in health care reform, and I plan to be right there. I don't ever want my children or grandchildren to have the painful experiences I have endured in my life. I want them to have more choices, and I want them to walk in a world that is kind to people with any type of disability.

I believe these goals can be accomplished in several ways, but the very first is for patients to stop hiding, to be willing to come forward and tell their stories in compelling ways. I actually attended a seminar on how to effectively share your story at the National Psoriasis Foundation annual meeting in 2006. Telling my own story is an issue with which I have struggled for many years.

Although I stated that at the beginning of the session, nobody took me at my word because I had just been given the Volunteer of the Year award at lunch. As a part of the workshop, we were all to consider how we might share our personal stories, and told we would be required to do so in that session. I suppose because I'd already been up there, accepting my award, it was decided I should go first. The humiliating truth is when they pressed, I cried, in front of everyone in that room. I couldn't do it then.

However, I decided that I was going to work really hard on developing that skill, and I think I have made some progress. We all need to be able to do this, maybe not on TV or the web, but beginning with our families, friends, and co-workers. I can say it gets easier with time and practice.

DEWKE: I’ve saved this one for last. I know you are associated with something called “the E Team.” Would you be willing to share that story with us?

LEARY:  The E Team is a group of dedicated patient advocates from around the country who counsel patients with erythrodermic psoriasis. Most of the deaths in the U.S. associated with psoriasis involve an erythrodermic patient.

When these patients started showing up on the Foundation’s message board, Mike Kammer came up with the idea of pairing each one with an advocate. The requirement for being an advocate on this team is having survived an erythrodermic event. As you know, there is no substitute for personal experience when talking with patients. I was the first advocate.

Now we have six advocates on the team. Three years ago, the Medical Board at the Foundation decided to make us an official project under the umbrella of the Foundation. At the time, we were working on developing a list of dermatologists trained to treat this severe form of psoriasis. It has been our practice to refer these patients to a medical provider as close to their home as possible. Since we counsel folks from all over the country, this is a huge task. As you might imagine, it is very important to get these folks in to see qualified providers a.s.a.p., and our doctors accept these patients within 24 hours of our referral.

This is a very uncommon way of doing advocacy. It is almost unheard of in the medical community. How often do the best and brightest doctors accept immediately a referral from a lay advocate? The first doctors to sign on to the national list were all of the members of the Medical Board of the National Psoriasis Foundation. In order to make this happen, Gail Zimmerman [then CEO of the Foundation] asked me to write the project brief, which went first to the Board of Trustees and then to the Medical Board.

Mike Kammer is generally in charge of identifying these folks, and also for determining which advocate might be the best fit. However, there are times when each of us has had as many as three patients at a time. The level of commitment from this team is incredible. Each patient requires something around 25 hours of service from intake to resolution. The good news is that a few of them decided, after getting such extraordinary advocacy assistance, to join us. Some have even become Support Group Leaders.

Not all of the patients we ask agree to join us in a formal manner, it is a big commitment. Generally, a new advocate spends several months reading and watching and learning. We share information about each client (with their permission) in case the advocate they have been working with becomes unavailable for any reason. Then someone else can pick up and go forward without having to go through the whole intake process again.

While Mike Kammer gets full credit for creating the team, I created the methods we use in the actual counseling. Having so much experience with erythrodermic psoriasis, earlier this year Mike and I were both asked to provide feedback for the Foundation's new publication for Emergency doctors on the diagnosis and appropriate treatment of erythrodermia.  I was astounded to see that the original document did not contain any suggestions for pain or itch, and made the appropriate suggestions. At this time, that document is sitting with the Medical Board for their additions and approval.

In the early years, the Team was not well known. However, as we counseled more and more patients, it came to be known in the online patient community that we were doing something good, and we began getting emails and personal messages from experienced posters when a potentially erythrodermic patient was posting. A couple of years after we became an official Foundation program, Mike and I did a presentation to the Support Group Leaders about the project. There had been a misunderstanding from newer staff about our roles as advocates and it was necessary to explain the program to staff and leaders. You see, since this work goes on long distance, by phone, we always ask that the client call the Foundation to confirm our references as advocates. While we don’t insist on that with adult clients, we won't even talk with a parent until we can confirm that they have made the call.

DEWKE: Thanks so much, P J, for taking the time for this interview. I actually feel like I've stolen time from the many important things you would otherwise be doing for me and everyone else with psoriasis! You have expanded our vision of psoriasis advocacy and blazed a path that beckons all of us.

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Visit NC PEAS web page here:
http://support.psoriasis.org/raleigh/

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