Name: Lawrence Z. Pizzi
Position: Executive director, The Brain Tumor Society, a charitable organization based in Watertown, Mass. that works to find a cure for brain tumors by funding research. The society also works to improve the lives of brain tumor patients by providing education and support to them and their families.
Background: Executive director since April 1999; assistant director of development for University of North Carolina’s Lineberger Comprehensive Cancer Center; 21-year career with U.S. Army as field artilleryman, logistician, and training and education specialist. While in the Army, Pizzi served as an assistant professor of English at West Point and as dean of the Army’s graduate school in Fort Leavenworth, Kan. Retired from the Army as a lieutenant colonel; also served as chairman of the North American Brain Tumor Coalition, a public policy advocacy group.
Education: Master’s of arts degree in English, University of North Carolina, Chapel Hill, 1982; Bachelor of Arts degree in classics, Bowdoin College, 1975.
Age: 46
Residence: Lexington, Mass.
LAWRENCE Z. PIZZI: “Brain tumors don’t discriminate, old, young, rich, poor, across all races, ethnic roups…economic strata, you name it.”
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PBN: You had a son, Tim, who died at age 12 from a brain tumor. What were the circumstances?
PIZZI: He was diagnosed in 1989. He was six years old. Initially he was treated a the University of Kansas Medical Center. We lived outside of Kansas City at the time. His initial treatment was successful enough to get him through the first five years of the disease. Near the end of the five years he had a recurrence. He was treated in San Francisco and Kansas City for the recurrence.
You had done extensive volunteer work with brain tumor advocacy and research during and after your son’s struggle, serving on the board of the National Brain Tumor Foundation and as chairman of the North American Brain Tumor Coalition. Why did you decide to join The Brain Tumor Society?
My aspiration had always been to do brain-tumor work full time. It was a great opportunity to fulfill that goal.
Explain the different types of brain tumors?
Brain tumors come in two basic categories: Primary and secondary. Primary brain tumor is a brain tumor that originates in the brain. Primary brain tumors also come in two categories. There are malignant brain tumors and there are so-called benign brain tumors. Benign brain tumors can be just as devastating as those that are biologically malignant. There are predicted this year to be about 17,000 new cases of primary brain tumors, a by far larger number of brain tumors are secondary brain tumors, and that is that they come from cancers that originate elsewhere in the body, so, for instance, a person with lung cancer or breast cancer might have some of their disease spread to the brain. The total number, when you put all of these two basic types together, is somewhere around 100,000 people a year will develop some type of brain tumor in this country.
How does that compare with other diseases?
That doesn’t make it one of the largest diseases, but what you have to know about brain tumors to put it into perspective is that brain tumors are the second leading cause of cancer death in children under 19 and the third leading cause of cancer death in young adults 20 to 39. About 37 percent of males and a little over 50 percent of females will survive five years after diagnosis of a primary brain tumor. So the median survival, living five years after the diagnosis is still pretty low.
How are brain tumors different from other tumors?
There are a couple of unique factors about brain tumors that differentiate them from other cancers, particularly. And the most obvious one is its location. Brain tumors in a part of the body that is, one, enclosed, it is not the same to open up the brain and do surgery as it is to open up the abdomen and do surgery. It has its own unique challenge. The second is that it is a disease of the organ that essentially makes us who we are. The brain doesn’t just control our bodily functions, it doesn’t just control movement and eyesight, it’s the seat of our emotions and the seat of our personality. One person called brain tumors a disease of both the body and the soul.
Is there a certain time in which people are more likely to develop a brain tumor?
We don’t know what causes brain tumors, primary ones particularly. We just don’t know. We know that if you smoke you may cause lung cancer. We know that certain chemicals to which you might be exposed might cause cancers in other parts of your body. But there’s been no links between the environment and brain tumors that we know of. A lot of people are very busy trying to find whether there is one or not. Brain tumors don’t discriminate, old, young, rich, poor, across all races, ethnic groups, across economic strata, anything, you name it. There are no demographics of brain tumors to speak of. They tend to affect the young and the very old but they cut across all ages. It’s just a very puzzling thing.
There’s no hereditary link?
I won’t say there’s none, it’s just none has been discovered. All cancer, and by that I mean cells that are growing that aren’t supposed to be growing, ultimately it’s a genetic disease, because the genes in the cells tell the cell what to do. And when something goes wrong in the cell, the cell does something it’s not supposed to do, that’s a genetic problem, so all diseases of cells that are growing that aren’t supposed to be growing (are) ultimately genetic. But whether that’s inherited or not is another question. It could be other factors that influence the cells’ decisions. It could be a failure of the body’s mechanism that’s supposed to check and double check every decision made in the cell. In fact if you think about it a minute it’s kind of amazing that we all don’t get cancer every day, because our bodies produce about 10 million new cells a day, just in the normal functioning of the human body, and that’s a lot of decisions that the body has to make every time one of those cells divides.
Where is most of the research around brain tumors going? Is it in trying to find out what causes it?
It’s being done at every level. The first level is basic science, in other words the research that is being done in a laboratory that looks at basic science, the results of which might be applied to many different things. But of course if we’re looking at someone studying basic science of a genetic mutation, that basic science may have a direct application to cancer or brain tumors. Then there (is) clinical science, translational science, that is trying to translate the results of something discovered in a laboratory into a way of detecting or treating or dealing with the disease. Because there are no standard treatments for brain tumors, these clinical trials where actual physicians are now working with scientists, the physician in the hospital setting is trying to apply some scientific principle to actually treating a patient, these clinical investigations are very important, because there are no standard protocols, there are no standard treatments.
So-called experimental treatment – I really don’t like that word; it has a very sinister connotation to some people – they’re investigational trials of perhaps a therapeutic agent. So basic science seeks to find scientific principles that then can be translated into the clinic. The term we hear often is ‘from bench to bedside.’ A lot of people work very hard (at) the basic science, knowing that they’re not there to discover something new, they’re there to discover something new and then aid in the translation of something new into something that actually benefits a patient.
How does the society aid in this research process?
The Brain Tumor Society funds basic science brain tumor research. It is our primary mission. We have other missions; we have a mission to educate health-care professionals, and we have a mission to support brain tumor patients, and we have to do those things. But we will be doing those things forever if we don’t also help find a cure. A very important part of that is (to) raise funds in order to give those funds over to very carefully selected scientific trial research projects that we believe have the greatest chance of ultimately benefiting brain tumor patients. To date, in the past seven years we have dispersed more than $2.5 million in research funds. We know that that’s not much, compared to the amount of money the federal government and the pharmaceutical companies can pour into research, but it’s very important money because it’s seed money, it’s venture capital. This is science as venture capital. A scientist has a good idea, a clinician has a good idea, he or she needs some initial data in order to go to the people who do have large amounts of money, such as the federal government or to pharmaceutical companies.
If a drug ends up being produced because of the initial research you funded, do you own a portion of that drug?
No. Absolutely not. We’re not in that line of business. All we ask is that those that we fund acknowledge the role of the Brain Tumor Society in helping them get the results that they got. We’re in this to find a cure. We have a scientific advisory council made up of prominent scientists that help us screen the grant applications that we receive (and) put them through a rigorous process of recommending to us which are worthy. We receive far more applications than we could possibly fund. We want to be sure we’re funding the absolute best. Our scientific advisory council puts those grants through the same process that they would go through if they were submitting a grant to the National Institute of Health. We’re very proud of our stringent review process.
Getting back to the treatment of brain tumors, you mentioned before that there are no standard protocols for treating the disease. How then does someone decide how to treat his or her illness?
First of all, it’s unfair to say that there are no standard protocols. There are very few. We know for instance that if you get a tumor of a certain type, and there are over 100 different types of brain tumors, that certain combinations of certain drugs, or certain combinations of radiation (and other treatments) have proven to be helpful, but to date nothing has proven to be curative.
How do you go about choosing? Well, first of all, that is one of the reasons we exist, to help people with those kinds of decisions. We don’t make decisions for people and we don’t try to push people one way or another, but we do have access to information about clinical trials, about physicians or institutions that are specializing in one type of brain tumor or another. So we have a lot of information that we try and (give) to help people make those decisions.
As you can imagine, the Internet is playing a tremendous role in making available to patients and families information that before you had to be really, really, really persistent to begin to scratch the surface ofthe number of clinical trials going on at any one time, and the eligibility for these trials. The National Cancer Institute is working very hard to make that information even more accessible to patients.
As a member of the North American Brain Tumor Coalition, the advocacy group, what public policy issues is the Brain Tumor Society following?
The NABTC is made up of seven brain tumor-related charitable organizations in the United States and Canada, its purpose is to represent the interest of brain tumor patients and their families at the national level.
We’re very involved in a number of arenas. We have provided testimony to the Food and Drug Administration, we sit on several panels, advisory committees in the National Institute of Health. Last year we made over 70 visits to Capitol Hill. We take the message of our desire to see biomedical research funding dramatically increased, doubling in five years. Brain tumor patients, along with many other sick people in this country, need access to specialists, and need access to clinical trials, need access to quality care, and we feel that these are major public policy issues.
