Name: Kevin Mead
Title: Executive Director
Organization: International Pemphigus & Pemphigoid Foundation
Disease focus: Pemphigus is a group of potentially life-threatening disorders characterized by blisters in the mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the glue that holds mucous membranes or skin cells together. This process is called “acantholysis” and is not fully understood. Pemphigus patients develop mucosal erosions and/or blisters, erosions, or small bumps that fill with pus or fluid. The four major types of pemphigus include pemphigus vulgaris, pemphigus foliaceus, IgA pemphigus, and paraneoplastic pemphigus. The most common form of pemphigus is pemphigus vulgaris; however, in some areas of the world, pemphigus foliaceus is more prevalent. Pemphigus vulgaris is generally more severe than pemphigus foliaceus. Pemphigus vulgaris usually involves a lot of blisters and erosions. In pemphigus foliaceus, blistering is more superficial than pemphigus vulgaris. The different forms of pemphigus are distinguished by their clinical features, associated autoantigens, and laboratory findings. Benign familial pemphigus, or Hailey-Hailey, is a genetic condition caused by cell mutation. It is not autoimmune like the other forms mentioned. A pemphigus diagnosis is based on consistent clinical, histological, and direct immunofluorescence findings where autoantibodies are against cell surface antigens. Laboratory studies help distinguish pemphigus from other blistering and erosive diseases.
Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or years with periods of exacerbation and remission. Localized variants of the condition have been reported, most often limited to the lower extremities and usually affecting women. There are two predominant types of pemphigoid: bullous pemphigoid (BP) and mucous membrane pemphigoid (MMP, also called cicatricial pemphigoid). Pathogenesis and management are quite different for these conditions. Scar formation in mucous membrane pemphigoid can lead to major disability.
Headquarters: Roseville, California
How did you become involved in rare disease: From the foundation’s point of view, they were looking for someone to do two things. They wanted to do a little bit more in fundraising and the diversification of revenue streams for the organization. Additionally, they were looking for someone to make the “I” in International Pemphigus and Pemphigoid Foundation more of a reality and less aspirational. I was brought in to develop both the global side of the entity and the fundraising efforts. When I first heard about the job, like most people, I had not heard about either of the conditions. I am unusual in the rare disease movement because I am not a patient, but what I discovered was that one of the treatments that was being used in the treatment of pemphigus was actually something that I had received myself for an unrelated condition. That got me talking because I remembered my experience from that drug a number of years ago. It was also for an autoimmune condition, and that gave me a point of reference perhaps that others from outside the patient community did not have. And then I had previously worked in a number of membership organizations and spent two or three years with United Way doing fundraising for them. So this position was further development in that desire to provide levels of service and to give back to a community.
Previous career: Nonprofit management
Education: B.S. in economics from the London School of Economics and Political Science, Post graduate Diploma and Master’s in audit from Birmingham City University, and Executive Masters in Association Management from the Solvay Brussels School
Organization’s mandate: It is really to provide the best possible information and peer support that we can for patients while we work with the research community on therapies and potentially a cure.
Organization’s strategy: It has grown organically. It started off, as many of these organizations do, as a peer support group. That remains one of the core things that we do with up to a hundred cases a month. People contact us by phone and by email and usually those conversations start off with “Help, I’ve just been diagnosed. I’m the first patient with this that my doctor has ever seen. What do I do now?” In some instances, those patients are in a major urban center. When they are, you can refer them to some of the support groups that we have. But when they are coming from outside North America, or from a more rural area in North America, we are providing that support through our peer health coaches and through our other programs, such as our conferences and our patient education seminars.
Funding strategy: It is split in three. There are the patients and their caregivers, (and frankly their estates, because this disease does often have tragic outcomes) who support us because they have appreciated the work that we have done for them or for others. That is a big part of it. It is people who are extraordinarily generous. Some people who can afford four figure sums a year. And it’s other people who send us $5 or $10 a year from their disability checks. All of that support, at all levels, counts. That’s one arm of the funding. The second arm of funding is from private foundations that are allied to a patient in some way. And then the third arm of funding comes from our partners in the pharmaceutical and IVIG [Intravenous immune globulin] and specialty pharmacy industries who like to present new therapies, research opportunities, clinical trials, et cetera, to our patient group and fund our work to help in that recruitment and that outreach.
What is changing at your organization in the next year: I would say there isn’t a lot that’s changing fundamentally, but there are adjustments. For example, as with many rare diseases, the biggest problem that we face is the lag between the emergence of symptoms and getting an authoritative diagnosis so that some treatment can begin. Our program on this is called “Biopsies Save Lives,” where we do outreach to the dental and medical communities. Obviously, in the last 16 months that went virtual and we are enhancing that. We just had a series of virtual presentations with a patient who is also a staff member, a dentist, and a physician who are familiar with the pemphigus. This was called, “Pemphigus Know It When You See It”, and it went out to a group collected by the ADA—the American Dental Association—and we had nearly 2000 participants in that from across the dental professions. This included everyone from dentists to hygienists to practice managers. We are really trying to get that group to think about pemphigus because this disease presents orally in a lot of cases. It possible they see some of the signs in a patient’s mouth. We are enhancing these efforts. Additionally, there is a lot of research interest in these diseases because the disease paths are pretty well understood. In addition to finding therapies and treatments for these diseases, drug companies can use this as kind a gateway for other autoimmune disease treatments. We have seen a significant uptick in research interest. We are doing a lot of patient recruitment, a lot of panel building for researchers, and a lot of work with getting people into clinical trials.
Management philosophy: First of all, grow the job, make the job more interesting. Give people the ability to add things to their job that make them feel more tied to the organization and tied to the patients. The second part is growing the people. As they show themselves to be competent, have them take on more responsibility. Have them go as far as they possibly can in their own professional and personal development within the organization and beyond. And then the last thing is to have fun doing it. This is serious work. These are serious conditions, but if we don’t enjoy the work, if we don’t enjoy each other, it makes it a bit of a chore to turn up at work. Even in these COVID times, we try to introduce a little lightheartedness to the workplace as well.
Guiding principles for running an effective organization: Keep the people happy. The staff and volunteers here are incredible. It is not their goal and objective, but every day they make me look good. That is not in their job descriptions, but because they are dedicated, they end up doing that. And that’s a good thing.
Best way to keep your organization relevant: We’ve got to keep listening to our patients. We have a board of 10 people of which eight are patients and two are closely allied with the disease. Two of our members of staff are patients. We also have a person on staff who has a close relative who is a patient. That gives us sort of instant daily insights, but we are constantly surveying our patients and asking our patients what they need. It’s a small community and they are very responsive and very involved with us, which is great. After every event that we hold we are constantly asking them how we can be more relevant to them? What content do they need to see? Where they need to be in terms of their progression with the disease? And what help do they need? Last year we held more than 20 patient education seminars–as well as a three-day long patient conference, and this year, as a result of their input we are expanding that.
Why people like working with you: Hopefully because I am delivering on those three things I mentioned—I’m growing them, I’m growing the job, and we are having fun doing it.
Mentor: There have been a whole bunch over the years. I have worked in a number of different places and in each of those, I can pick out either a board member or a more senior person on staff who helped me and guided me. In 16 years at PrimeGlobal [an association of independent accounting firms], Ray Buehler who was a board chair, and then came off the board and has been an incredible asset and guide to me in my development as a leader. When I was at the Institute of Internal Auditors, which was years and years ago, it was my first manager, Brent Ogilvie, who basically taught me how to be professional, but have fun doing it. I picked up on that part of my philosophy from him.
On the Job
What inspires you: The feedback that we get from one of those patients who calls up and says, “I’ve just been diagnosed. Help.” We have a good case tracking technology system. After each interaction with a coach, a patient is sent a thing that basically says, “How was it? Were you helped? They fill in the scores from one to five and that’s great information. But then when they take the time to write the comments and Becky Strong, who manages that process for us, copies me on The submissions of note. She copied me on one and I wrote back “I’m close to tears because of this.” And she says, “Yeah, I wasn’t close to tears. I was in tears” because the patient said that we took them from a stage where they didn’t know what to do. Even their physician was saying, “I don’t know much about this” to where they had good baseline information and had a support system set up for them in what is going to be a rough journey for them as a patient. Seeing that feedback just makes you wake up every morning and want to do more of it.
What makes you hopeful: The level of research that is going into these diseases now from across a broad spectrum of drug companies—everything from the household names to start ups that are venture capital funded at this stage. That level of interest from a variety of companies going after new therapies in new and different areas gives you some hope that there may be something that would be genuinely long-term palliative with low incidence of side effects, or potentially curative in the future.
Best organization decision: We’d gone mostly virtual before COVID. Now, as a result of COVID, we are a virtual organization. We’re headquartered in Roseville, California, but it’s really just our legal address for registration and mail. We have an empowered, self-managed staff that is relied on to do the work, not relied on to punch a clock from 8:30 a.m. to 5 p.m. The work’s getting done, and we have a very empowered staff in that respect.
Hardest lesson learned: I have been fortunate so far that in the nine months that I have been here that we’ve not encountered any disasters. However, the fragility of the funding model, and that is a commonality across every small nonprofit that there is, is something that is a constant concern. We have a limited number of financial supporters, be they in industry, foundations, or individuals. It does not take much attrition to cause negative impacts. We have not seen it yet, but it is one of the things that keeps me awake. And it is one of the reasons we’re trying to make our fundraising more robust.
Toughest organization decision: I was not brought in to fix anything because this organization was not broken. That’s the good news. What they were looking for was incremental change. My predecessor, Marc Yale, actually had to leave for medical reasons. He is a patient, and he came out of remission and could no longer keep the full-time commitment. He had done a tremendous job in moving the organization forward, and fortunately stayed on as a very committed volunteer. There has been incremental stuff, but they haven’t really been difficult decisions to make.
Biggest missed opportunity: It comes back to funding again. Without being too capitalistic, we know we are leaving money on the table. We are addressing that. For example, when nonprofit patient organizations do contract work for researchers, drug companies, they make their pricing based on the effort they involve. So, if it takes five hours of effort, they say, “Well, we charge $250 an hour. So that’s $1,250.” We are instead pricing now based on value, because if a company is going to have a multi-million drug offering out of partnering with us, then $1,250 for access to a patient group that will guide the development of that is frankly loose change. We are going to price according to the value that the user of our data, or the user of the access to our patients, will derive rather than from the effort involved. That also means, in certain circumstances, we will do things for free because we recognize that no one’s going to be able to get monetization out of the effort that we are developing for them.
Like best about the job: What I like best is the staff and all of the people. I have a great team to work with.
Like least about the job: Some of those wonderful staff members and others that we work with are on west coast time, which means I am sometimes taking calls at 7:00 at night.
Pet peeve: When the Irish rugby team doesn’t win. That’s a source of irritation.
First choice for a new career: Even though I would probably hate it because it’s a lot of hard work. I like the idea of being a farmer. I live in Vermont, and it is dairy country, hence Ben and Jerry’s ice creams comes from here and Cabot cheese, and things like that. I would hate getting up at 4:30 in the morning to milk the cows, but viewed in a romantic fashion, farming seems very attractive.
Most influential book: The Third Policeman by Flann O’Brien
Favorite movie: Apocalypse Now or The Big Lebowski – I am actually a minister of the Church of Dudology. I have the certificate of ordination on my wall.
Favorite music: The only band that matters: The Clash.
Favorite food: Indian food
Guilty pleasure: Motorcycles – I’ve got five of them.
Favorite way to spend free time: Reading or riding.