DEWKE: As an immunologist yourself, do you think the "cure" for psoriasis, when and if one is found, will likely be closely related to curing other immune system diseases (e.g., Crohns)?

Psoriasis likely shares common elements with Crohn’s disease and for that matter with other autoimmune diseases. An increased understanding for psoriasis certainly helps accelerate the understanding and treatment of other autoimmune diseases like Crohn’s. Because the organ affected by psoriasis (the skin) is easily accessible, one could argue that research in psoriasis might provide more clues than studying autoimmune diseases where the site of action is not as accessible — MS–the brain, RA–the joint, Crohn’s–the GI tract.

DEWKE: I understand most of the systemic medicines, including biologics, typically used as psoriasis treatments involve immune system suppression in various limited fashions. How satisfied are you — wearing your immunologist hat — that our immunosuppressive drugs are the right approach to palliating our conditions?

Of course, immunology is not the only important scientific discipline to be studied for psoriasis. An increased knowledge of genetics, epidermal cell biology, epidemiology and many other disciplines will be required before a complete understanding of this disease is to be obtained.

DEWKE: A sentence in the research section of psoriasis.org says, “we fund early stage research projects that demonstrate the potential to significantly increase our understanding of the genetic and environmental basis for psoriasis and psoriatic arthritis.” This question focuses on the “environmental basis.”  What kind of research contributes to our understanding of the environmental basis for psoriasis? Can you give us any examples of recent work or on-going work in this area?

BEBO: While the cause of psoriasis is not completely known, it is now clear that both genetic and environmental factors are involved. So really, when we say environmental, we are referring to any agent or activity that promotes psoriasis that is not genetic. The primary area of study that explores the environmental aspects of disease is called epidemiology. Epidemiology is the study of factors effecting health and illness in populations. Epidemiologists have made a number of important findings about psoriasis in the last few years including:

1. People who smoke are at an increased risk for developing psoriasis,
2. People with psoriasis have an increased risk for being obese,
3. People with psoriasis have an increased risk for cardiovascular diseases and
4. People with psoriasis have a shorter life-span than people without psoriasis.

The study of epidemiology has the potential to teach us a great deal that will both improve the quality (and perhaps quantity) of life for those living with psoriasis as well as identifying triggers for disease that may yield important clues to the cause of psoriasis.

DEWKE: When completed, the Victor Henschel BioBank is supposed to be “the largest source of DNA samples and clinical registry in the world for psoriasis and psoriatic arthritis research.” First, when do you anticipate completing the sample collecting? Is the Foundation likely to fund some amount of the research done using Biobank material? Will the Foundation be involved in selecting all the research involving that material?

BEBO: Currently, the Victor Henschel BioBank has almost 800 samples collected and we would like to thank everyone who has donated their DNA to help find a cure for psoriasis. The rate at which we are collecting samples has accelerated over the last few months. The primary reason why is that we now have the ability to collect samples at our community events. For example, we collected 50 blood samples at the Walk for Awareness in Miami and 21 samples at our Capitol Hill Day in Washington, D.C. We will be collecting blood samples at most, if not all of our walks scheduled for this year and at our annual Leadership Conference in San Antonio. Have a look at our website to find more about how and where you can donate your DNA.

We hope to reach our goal of 2,000 samples by sometime next year. We expect to start releasing samples to researchers before reaching this goal, perhaps as soon as this summer. The process for releasing the samples will require an application be made by the interested researcher that outlines the experimental plan and review of this application by a panel of scientific peer reviewers.

Our grant awards are competitive and awarded after review by a different panel of scientific peers. It is quite likely that one or more grants will be submitted to the Foundation proposing to use the BioBank samples in their study. It will be up to the grant review committee and the research committee of our Board of Trustees to determine whether a grant proposing to use BioBank samples merits funding. I suspect that we will receive numerous competitive grants and that we will ultimately fund research using our BioBank samples.

DEWKE: The Foundation also tracks the impact psoriasis and psoriatic arthritis has on patients. Can you explain how that is done? What are some of the findings so far from this patient tracking?

BEBO: The Foundation conducts survey panels twice each year to understand the experiences and opinions of people with psoriasis and/or psoriatic arthritis and document the burden of these diseases. The surveys are conducted by both email and telephone and usually the responses of about 400 people are included. The questions include a scientifically validated quality of life questionnaire, we ask what types of treatments people are taking and how satisfied they are with them. We ask how severe is their diseases and how does it affect their daily lives, and many other questions.

Some of the most important things we have learned from the surveys include:

1. About 70% of people with psoriasis consider it to be a significant problem in their everyday life,
2. 57% of people with psoriasis are not treating their disease,
3. 40% of people with severe psoriasis are being treated with only a topical steroid, and
4. About 30% are very satisfied with their treatment.

You can find the results from our surveys in the form of survey “snapshots” on our website: http://www.psoriasis.org/research/foundation/survey_panels.php/

DEWKE: As we begin to associate psoriasis with other diseases and conditions through a more thorough understanding of the genetic underpinnings, might we see research with a broader focus? For example, studies that might measure results in both rheumatoid arthritis and psoriatic arthritis and/or psoriasis at the same time?

BEBO: It is true that there are genes associated with psoriasis that are also associated with other autoimmune diseases. The case is strongest for Crohn’s disease, but psoriasis also shares genes with rheumatoid arthritis and lupus. It is also interesting that the TNF blocker class of biologics is effective in psoriasis as well as Crohn’s, rheumatoid arthritis and several other forms of arthritis, suggesting a connection between psoriasis and these conditions. It is quite possible that there is a common link between psoriasis and other autoimmune disorders and there are a number of prestigious research groups focused on understanding how and why the immune system becomes unbalanced in these diseases. This could, one day, lead to a treatment that slows down or even prevents all autoimmune diseases.

DEWKE: Regarding Genentech’s pulling Raptiva from the market as a result of associated fatal cases of PML: Is this likely to make it more difficult to bring future biologics to market — or make the studies more difficult or longer? Might it make dermatologists more skittish about prescribing biologics?

BEBO: The regulatory environment for biologics was getting stricter even before the news about Raptiva. The FDA has been asking for better surveillance of drug effects after market and it will require new drugs to do a better job of this. Many if not all new biologics will require a Risk Evaluation and Mitigation Strategy (REMS) which will require the company to monitor efficacy and side effects quite closely after approval. Since PML appears to be a long-term risk for some psoriasis drugs, it will be difficult to establish this risk during the course of a clinical trial, thus a REMS will serve to monitor for this and other potential drug safety issues. [Re: "long-term risk." Extant PML cases involved people who have taken Raptiva for 2 years or longer. -Ed]

It is hard to know how this news will affect the prescribing habits of dermatologists. Raptiva had a unique mechanism of action. It is quite different from the TNF blockers and from the new class of biologics called IL-12/23 blockers. Some of the TNF blockers have been around for more than a decade with little or no indication of PML, so some dermatologists consider this class relatively safe from this risk. The risk of PML for the IL-12/23 blockers is simply not known, so they might be a bit more cautious with this class of treatment (when it becomes available).

DEWKE: Does the Foundation endorse proposals for research grants that scientists pitch to third-party funding sources? I’m thinking specifically about groups going after continuation funding for what the Foundation might have funded as an “early stage research project.” 

BEBO: The purpose of our pilot grant program is to provide initial funding for researchers so that they can develop their research programs to the point where they will be competitive for more comprehensive funding from other sources. For example, the National Institutes of Health support projects that last from 3 to 5 years and cost upwards of $1.5 million dollars. This type of funding is absolutely necessary to advance our knowledge of psoriasis but is currently beyond the scope of what the Foundation can support. When one of our researchers applies for NIH funding for a psoriasis and/or psoriatic arthritis project from the NIH and asks us for a letter of support we are very happy to provide it.

It is interesting to point out here that results from a recent survey of our pilot grant recipients suggest that our funding strategy is working. 93% of Foundation grant awardees are still active in psoriasis research; 73% of them have published their findings in peer-reviewed scientific journals (80 papers in total); 75% have submitted one or more grants to the NIH; the result of which was that 17 grants submitted by Foundation sponsored scientists were funded by the NIH totaling over $5 million in research support.

This might also be a good place to announce the Foundation’s new emphasis on research. The Board of Trustees recently approved a new 5-year strategic plan that places research as its number one priority. The research investment will be placed into defined areas of biomedical science that have the best chance of advancing us closer to a cure. We have assembled a prestigious committee of psoriasis and psoriatic arthritis leaders to help advise the Foundation how best to make this research investment. Stay tuned for more announcements about our new research initiatives.

DEWKE: That's exciting news. Thank you very much for your time. We're looking forward to a bright (as in illuminating) next few years.