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Interview: Clinical trials for life
Interview Photography: Brian Smale
Trials of life It is only thanks to medical science that 51-year-old Mark Guntrum is sill alive. He has cystic fibrosis, a disease that kills by clogging the lungs and digestive system. Now he is helping to develop future treatments by volunteering for clinical trials and encouraging other patients to follow suit. He tells Peter Aldhous about life at the sharp end of medical research When were you diagnosed with cystic fibrosis?
What were the treatments like in those days?
It wasn’t until age 13, after trying out for highschool soccer. I was coughing a lot. I was brought to a lung specialist in Albany Medical Center near my home in New York state, who diagnosed me after a three-week inpatient stay. In those days, there was no genetic testing. Had I gone another year undiagnosed I probably would not have survived. Your lungs get clogged, and sticky secretions block the ducts from the pancreas that release important enzymes.
Primitive. I had to take a digestive enzyme that was just a powder in a capsule. We had no aerosols to get antibiotics directly into the lungs, which are vulnerable to infection, so I was placed on oral antibiotics. Those pills wiped out your intestinal flora, giving you diarrhoea. There was an aerosol treatment to try to help you cough up the secretions, though. It was propylene glycol solution, delivered by therapeutic air compressors. Later it was discovered there was asbestos in these units.
What was your prognosis?
At the time, CF was thought of as a childhood disease, because no one born with it survived into adulthood. Within a year into college, I was suffering severe bowel obstruction. The third time I went into the emergency room I heard my physician say: “We’re going to have to operate, or we’re going to lose him.” In all, I’ve almost died five times. One time they had to put out an alert on the college campus to find me, because I had this terrible infection – when you’re sick like that, you’re as high as a kite. Intravenous antibiotics were administered with steel needles directly into the veins in my hand.
Profile After being diagnosed with cystic fibrosis as a teenager, Mark Guntrum studied communications at the State University of New York at Albany. He later worked for state government agencies, in the education sector, and for a business communications firm. In addition to raising funds for the Cystic Fibrosis Foundation, he has repeatedly taken part in clinical trials of new treatments.
48 | NewScientist | 29 September 2007
When did you start to volunteer for clinical studies?
It was as a favour to my physician when I was 17 or 18 years old. He said: “They’re going to lie you face down on a gurney, and they’re going to attach electrodes to your spinal column.” It was to measure calcium density, because they were worried about the side effects of certain medications on bone. It wasn’t very comfortable. Then in my late thirties I volunteered for a trial of Genentech’s drug pulmozyme, which thins the mucus secretions. When your health is compromised and there aren’t that many options, what do you have to lose? Being on death’s doorstep five times really reduced my level of fear. It was like: “What can I do to help?” So you felt a sense of duty to volunteer?
As a teenager I got involved with the Cystic Fibrosis Foundation (CFF) on fund-raising for research, so I knew what it took to raise money. I also lost a lot of friends to this disease. There was Patrick, a senior in high
Cystic Fibrosis has almost killed Mark Guntrum on five occasions. He has lost many friends to the disease
school who wanted to become a journalist. I got him some journalism books from the college bookstore, and he died three months later. Then there was Dominic, who got through three years of law school and died three weeks after he graduated. Those are incentives to volunteer. How involved are you in the research process?
I consider myself to be a volunteer, a subject, and in a way a partner. Clinical trials in CF have been bolstered because of the aggressive approach of the CFF. Also, I’m not working right now for health reasons. When I came to Seattle with my wife in July 2003, I didn’t know a soul. Getting involved in clinical research was like getting a foot in the door. Now I’m busy every single day. Recently I met with Bruce Montgomery, head of respiratory therapeutics with Gilead, www.newscientist.com
which is developing the antibiotic aztreonam lysinate. I showed him the results describing my recovery of lung function on the drug and he high-fived me. I do feel ownership, because I have the potential to benefit. Clinical trials can be risky – have you ever suffered any bad side effects?
There is a drug called azithromycin – it’s a combination anti-infective and antiinflammatory that improves lung function. My problem is I have medication allergies. The azithromycin was causing sweatiness, dizziness, blotches on my arms and disorientation. I’d drive from A to B and couldn’t even remember how I’d got there. I called my physician, who was administering the study, and explained the symptoms. He ordered me off the medication immediately. Did that experience make you reluctant to sign up for more trials?
No. I really feel I want to take the risk, but I www.newscientist.com
don’t want to come across as a daredevil. I’m less afraid of dying; I’m more afraid of being severely debilitated.
with all the cleaning and boiling of nebulisers necessary, it was an additional hour per day for me. That’s why a lot of potential study patients say they don’t have the time.
Is fear the main reason some patients are put off volunteering?
Is research held back by this difficulty in recruitment?
I think some of them are fearful of being lab monkeys or guinea pigs; there may be a certain stigma attached to that. Some patients do not want their CF to define who they are. They want their profession. They want dignity. But time is the big one.
If you go on the CFF website there is asection on recruitment. The foundation has put people with CF on high alert that this is a pressing issue, because there is an unprecedented level of research. We need willing participants to maximise these opportunities.
Why is time such a problem?
Are you involved in trying to recruit other patients?
I have to do 2 hours of therapy every day. Some patients need more, others less. I have to do postural drainage on cushions at six different positions while slapping my chest to dislodge those secretions from smaller airways. I have to take antibiotics in aerosol form and clean my drug nebulisers. This is just the basic treatment without involvement in a trial. With the aztreonam lysinate trial,
By showing up at meetings, I’m trying to provide an example to parents to get their kids involved. In just the past 10 years we’ve increased life expectancy for CF patients by 10 years. I am something of an ambassador. I do not want CF to define who I am. Instead, I want to be able to define what CF is: controllable, manageable and, ultimately, curable. ● 29 September 2007 | NewScientist | 49
Trials of life It is only thanks to medical science that 51-year-old Mark Guntrum is sill alive. He has cystic fibrosis, a disease that kills by clogging the lungs and digestive system. Now he is helping to develop future treatments by volunteering for clinical trials and encouraging other patients to follow suit. He tells Peter Aldhous about life at the sharp end of medical research When were you diagnosed with cystic fibrosis?
What were the treatments like in those days?
It wasn’t until age 13, after trying out for highschool soccer. I was coughing a lot. I was brought to a lung specialist in Albany Medical Center near my home in New York state, who diagnosed me after a three-week inpatient stay. In those days, there was no genetic testing. Had I gone another year undiagnosed I probably would not have survived. Your lungs get clogged, and sticky secretions block the ducts from the pancreas that release important enzymes.
Primitive. I had to take a digestive enzyme that was just a powder in a capsule. We had no aerosols to get antibiotics directly into the lungs, which are vulnerable to infection, so I was placed on oral antibiotics. Those pills wiped out your intestinal flora, giving you diarrhoea. There was an aerosol treatment to try to help you cough up the secretions, though. It was propylene glycol solution, delivered by therapeutic air compressors. Later it was discovered there was asbestos in these units.
What was your prognosis?
At the time, CF was thought of as a childhood disease, because no one born with it survived into adulthood. Within a year into college, I was suffering severe bowel obstruction. The third time I went into the emergency room I heard my physician say: “We’re going to have to operate, or we’re going to lose him.” In all, I’ve almost died five times. One time they had to put out an alert on the college campus to find me, because I had this terrible infection – when you’re sick like that, you’re as high as a kite. Intravenous antibiotics were administered with steel needles directly into the veins in my hand.
Profile After being diagnosed with cystic fibrosis as a teenager, Mark Guntrum studied communications at the State University of New York at Albany. He later worked for state government agencies, in the education sector, and for a business communications firm. In addition to raising funds for the Cystic Fibrosis Foundation, he has repeatedly taken part in clinical trials of new treatments.
48 | NewScientist | 29 September 2007
When did you start to volunteer for clinical studies?
It was as a favour to my physician when I was 17 or 18 years old. He said: “They’re going to lie you face down on a gurney, and they’re going to attach electrodes to your spinal column.” It was to measure calcium density, because they were worried about the side effects of certain medications on bone. It wasn’t very comfortable. Then in my late thirties I volunteered for a trial of Genentech’s drug pulmozyme, which thins the mucus secretions. When your health is compromised and there aren’t that many options, what do you have to lose? Being on death’s doorstep five times really reduced my level of fear. It was like: “What can I do to help?” So you felt a sense of duty to volunteer?
As a teenager I got involved with the Cystic Fibrosis Foundation (CFF) on fund-raising for research, so I knew what it took to raise money. I also lost a lot of friends to this disease. There was Patrick, a senior in high
Cystic Fibrosis has almost killed Mark Guntrum on five occasions. He has lost many friends to the disease
school who wanted to become a journalist. I got him some journalism books from the college bookstore, and he died three months later. Then there was Dominic, who got through three years of law school and died three weeks after he graduated. Those are incentives to volunteer. How involved are you in the research process?
I consider myself to be a volunteer, a subject, and in a way a partner. Clinical trials in CF have been bolstered because of the aggressive approach of the CFF. Also, I’m not working right now for health reasons. When I came to Seattle with my wife in July 2003, I didn’t know a soul. Getting involved in clinical research was like getting a foot in the door. Now I’m busy every single day. Recently I met with Bruce Montgomery, head of respiratory therapeutics with Gilead, www.newscientist.com
which is developing the antibiotic aztreonam lysinate. I showed him the results describing my recovery of lung function on the drug and he high-fived me. I do feel ownership, because I have the potential to benefit. Clinical trials can be risky – have you ever suffered any bad side effects?
There is a drug called azithromycin – it’s a combination anti-infective and antiinflammatory that improves lung function. My problem is I have medication allergies. The azithromycin was causing sweatiness, dizziness, blotches on my arms and disorientation. I’d drive from A to B and couldn’t even remember how I’d got there. I called my physician, who was administering the study, and explained the symptoms. He ordered me off the medication immediately. Did that experience make you reluctant to sign up for more trials?
No. I really feel I want to take the risk, but I www.newscientist.com
don’t want to come across as a daredevil. I’m less afraid of dying; I’m more afraid of being severely debilitated.
with all the cleaning and boiling of nebulisers necessary, it was an additional hour per day for me. That’s why a lot of potential study patients say they don’t have the time.
Is fear the main reason some patients are put off volunteering?
Is research held back by this difficulty in recruitment?
I think some of them are fearful of being lab monkeys or guinea pigs; there may be a certain stigma attached to that. Some patients do not want their CF to define who they are. They want their profession. They want dignity. But time is the big one.
If you go on the CFF website there is asection on recruitment. The foundation has put people with CF on high alert that this is a pressing issue, because there is an unprecedented level of research. We need willing participants to maximise these opportunities.
Why is time such a problem?
Are you involved in trying to recruit other patients?
I have to do 2 hours of therapy every day. Some patients need more, others less. I have to do postural drainage on cushions at six different positions while slapping my chest to dislodge those secretions from smaller airways. I have to take antibiotics in aerosol form and clean my drug nebulisers. This is just the basic treatment without involvement in a trial. With the aztreonam lysinate trial,
By showing up at meetings, I’m trying to provide an example to parents to get their kids involved. In just the past 10 years we’ve increased life expectancy for CF patients by 10 years. I am something of an ambassador. I do not want CF to define who I am. Instead, I want to be able to define what CF is: controllable, manageable and, ultimately, curable. ● 29 September 2007 | NewScientist | 49