Rejected: They Tell me I'm Too Healthy to Take Part in a Health Study
The story in the Telegram & Gazette sounded like what the doctor ordered, literally: Worcester Polytechnic Institute professor of mathematical sciences and biomedical engineering, Dr. Dalin Tang, was leading a study of the growth, progression and rupture of arterial plaque. For the study, Dr. Tang and his team had received a $1.8 million award from the National Science Foundation.
"The question is not to record people's deaths," Dr. Tang was quoted as saying. "Rather, we want to capture those patients before anything happens."
What interests Dr. Tang is the many otherwise healthy victims of cardiovascular disease who die suddenly and without prior symptoms. He sees a need for non-invasive screening and diagnostic methods to identify risk factors and help people avoid preventable tragedy.
More than half of all heart attack deaths are caused by fatty deposits, plaque, that build up in arteries over time. As the build-up get bigger, they limit oxygen and blood flow. The deposits can rupture suddenly, breaking off into the bloodstream as clots that can completely block an artery.
If the breach occurs in a coronary artery that feeds oxygen and blood to the heart, the result can be a heart attack with a sudden and dramatic weakening of the heart muscle, impairing its ability to pump. If a blood clot blocks a carotid artery, which carries blood and oxygen to the brain, a stroke can occur.
What causes the rupture and which plaques are most vulnerable to rupture are unknowns. Some of the factors may be mechanical forces, cell activities, condition of vessel surfaces, and stresses and strains at critical sites (such as the plaque cap). These are some of the things that Dr. Tang and his team want to learn more about, so that better diagnostic tools can be created.
With my liver pumping out more bad cholesterol than my body can use, would I be a good guinea pig in Dr. Tang's study? I have high cholesterol and but no symptoms. My involvement in the study would seem to be a win-win both for the study and for me. Dr. Tang and his team get a live, cooperative lab rat and I find out exactly what's going on in my arteries.
So I dashed off an E-mail to Dr. Tang offering myself to his study. I wrote that I had read of his study of arterial plaque with a goal of developing better non-invasive screening and diagnostic methods to identify asymtomatic patients.
"Sounds like you are studying people like me,"I wrote, "age 68, elevated cholesterol, no other risk factors, no symptoms, active lifestyle. If so, I would be interested in becoming involved in your study because my doctors are suggesting that I go on a statin, but I am reluctant to do so without seeing hard evidence of actual build-up of arterial plaque."
In a few days, Dr. Tang replied:
Dear Mr. George Pollock,
Thank you for your interest in our study.You are certainly welcome to participate in our study. One possible difficulty is that my MRI group is in Seattle. I myself do computational modeling based on images provided by them. They have been doing patient studies for many years.
One starting point (normally followed by doctors) is to identify whether one has a plaque. Ultrasound is simpler. Framingham Heart Study actually will do a complete physical for you, free of charge. They are always looking for volunteers. They are very experienced. They will surely check your carotid arteries. Coronary is harder, and I do not know how much they can tell you.
If you are interested in doing MRI with my group, I could connect you to my collaborator. I believe MRI scan should be covered by the grant. But we will not be able to cover other expenses.
I hope this helps.Good luck and take care.
I contacted the Framingham Heart Study and received the following reply from its director:
Dear Mr.. Pollock,
Thank you for your email and your interest in the Framingham Heart Study. Unfortunately, our study is closed to enrollment (our only participants are the original study participants from 1948 and their children and grandchildren).
I wish you luck.
Daniel Levy, MD, FACC Director NHLBI's Framingham Heart Study
I then sent the following e-mail to Dr. Tang's MRI team in Seattle:
Dear Dr. Yuan,
I have asked Tang of WPI if I could be involved in his study of growth, progression, and rupture of arterial plaque and the search for noninvasive screening and and diagnostic methods.
With a total cholesterol of 233, with LDC 169, my doctors are suggesting that I go on a statin but I am reluctant to do so absent evidence of actual blockage putting me at risk. My reason for joining the study is to find out if I have such a blockage.
Dr. Tang wants to find a way to help otherwise healthy people avoid needless tragedy. I am as asymptomatic as one can be. I am 68, not overweight, no high blood pressure, no diabetes, have a good diet, no risk factors except age and elevated cholesterol.
I am sailing along playing hard singles tennis four times a week and my tennis game has never been better. I'd like not to spoil things by suddenly dropping dead because of clogged arteries.
I understand that you are in Seattle and I am in Worcester, Mass. Is there any way I can be tested in Worcester and work with you and Dr. Tang? Being retired, I have the time to make myself available for testing. Also, this is important enough to me that if I can't be tested here, I would consider going out to Seattle, though I hope that could be avoided.
For more about my cholesterol issues, see the latest post on my blog, http://patientsprogress.blogspot.com/. My E-mail here is firstname.lastname@example.org. My hope is that it will be possible for me to be involved in this important study -- to the great benefit of both of us and hopefully many others.
I got this reply from Dr. Yuan:
Dear Mr. Pollack, (a common misspelling I run into all the time)
Thank you for your inquiry and I can understand fully your situation. I think the best thing to do now is for you to have a carotid ultrasound scan in Worcestor area to see if there is any blockage and/or thickening at your artery. If you do have any signs of problems - there are options that you can have MRI scans done in Boston area. We are actually pursuing approaches for multi-center studies, I am confident we can find a solution for you to be enrolled in a study if such need arises. With best regards,
Chun Yuan, Ph.D.
Professor of Radiology, University of Washington
Sounded to me like I was getting somewhere.
I sent Dr. Yuan the following e-mail:
Dear Dr. Yuan,
RE your suggestion that I get a carotid ultrasound scan to see if there is any blockage and/or thickening at the artery. It so happens, I had a carotid ultrasound scan in Seattle a year ago after a dizzyness episode. The scan was ordered by Dr. William H. Likosky of Minor and James on Minor Avenue. The scan found "minimal plaque." Today I mailed you copies of the results as well as recent blood tests from the VA showing elevated cholesterol (233). You should receive this information in a few days. After you have had a chance to review it, please advise how we should proceed from here regarding enrolling me in a study. According to the tests, I have high cholesterol but minimal build-up. I don't want to go on a statin until I see evidence of blockage putting me at risk and I think only a longterm study can observe and evaluate this.
A couple of weeks went by. Then I got the following e-mail from Robin Smith:
I am a research coordinator for Dr Chun Yuan at the University ofWashington. Dr Yuan passed along your request for information about his studies. On his behalf, I would like to thank you for your interest in our research. Dr Yuan's area of expertise is MRI imaging technology, but he is involved with several studies about high cholesterol and cardiac disease.
However, those studies require established artery disease as a criteria for participation. Judging by your recent carotid duplex, you would not qualify to take part in Dr Yuan's current studies since your carotid arteries show a very minimal build-up of plaque.There may be institutions in your area that are conducting researchon preventing heart disease.
Although it is encouraging to know that you are in good health, you may still wish to consider the use of a statin. Statin's preventative effect against coronary artery disease has been well established in both research and clinical practice.
Again, thank you for your interest in our research, and thank you for taking time to send us your clinical data.
Robin Smith, UW Radiology
It was the kiss-off. Oh well, I tried. I thought medical science would be interested in someone like me who has had high cholesterol for years but with echocardiograms and carotid artery scans showing minimal plaque build-up.
I always thought that untreated high cholesterol automatically results in significant plaque build-up over time and that it is likely to lead to a heart attack or a stroke. Yet Ms. Smith, having seen my scans and echocardiagrams, pronounced me healthy, too healthy to be studied.
However, while showing me the door, she joins with my doctors in suggesting that I consider taking a statin drug as a preventive measure. But why? If my arteries are not clogged with plaque now, why -- assuming no big change in diet and lifestyle -- would they be in the future?
And here's the question that Pfizer and Merck and the whole multi-billion-dollar statin industry do not want to hear: Is is possible for someone with cholesterol of 233 to not only be healthy but stay healthy and even live to 120?
So long and keep moving.