In response to a CardioBrief editorial posted earlier this week that was highly critical of SHAPE, I received a letter from a lawyer who is a member of SHAPE’s board of directors. Although I disagree with her views, her position is worthy of respect. With her permission I have posted her letter, followed by my own response.
Dear Mr. Husten:
Someone forwarded to me your latest blog about SHAPE and the upcoming Peggy Fleming event in Houston, and I just had to respond. I understand that you have written some very fair things about SHAPE in the past, but your current posting is personally very distressing to me.
I have been a Member of SHAPE’s all-volunteer board for about three years. I first got involved with SHAPE in 2005 after my husband of 25 years died of sudden cardiac arrest in April 2004. He was 49 years old and a lifetime nonsmoker. He had a happy sunny personality and a 34 inch waist that he maintained by carefully watching his diet and exercising. He had a family history of heart disease and somewhat high cholesterol (total 250), which was being closely managed by his family doctor with high doses of Lipitor. Most importantly for me, he was the love of my life and the devoted father to our two teenaged sons.
An autopsy after his death revealed that he had three blocked coronary arteries–one 90% blocked, one 80% blocked and one 40% blocked. He had never experienced any chest pain or shortness of breath, and he had just received a clean bill of health from his doctor 10 days before he died. After delving onto the medical literature, I learned about non-invasive coronary calcium screening, and I am convinced that, had such a screening test been prescribed for him (and he did ask his doctor for such a test in 2001 and was refused), he would still be alive today.
When I discovered the SHAPE Report and the SHAPE non-profit organization in the course of my research and read about the very eminent doctors who had loaned their expertise and good names to the endeavor of spreading the word about the importance of non-invasive screening for coronary calcium deposits, I volunteered to help in any way that I could. Since 2005, I have held two modestly successful golf fundraisers for SHAPE in memory of my late husband.
Lest you think that I am some naive grieving person who has been “taken in,” please know that I am a very prominent attorney in Baltimore who knows how to do her research and who considers herself to be a pretty good judge of character. Given my personal situation, I was very disturbed to read your latest blog in which you describe the SHAPE Board, in so many words, as a group of self-serving shysters.
I have had the pleasure of working with all the distinguished doctors and other laypeople on the SHAPE Board for several years now, and I can tell you for a fact that not a single one has personally profited at the expense of SHAPE. Not by one penny. I would never allow myself to be associated with the group if that were the case.
Far from being self-interested, I have personally witnessed the doctors on the SHAPE Board volunteering long hours to write papers, deliver lectures to other doctors, monitor on-going research studies, offer free blood pressure and cholesterol checks to the public, raise money, and do whatever else it takes to try to save the lives of tens of thousands of people who die every year from heart disease–many of whom, like my late husband, have no warning that they are a ticking time bomb. Sure, we have a doctor on our Board who is in the screening business, but SHAPE is very clear that we do not advocate as a group for any one particular type of screening–we support and encourage any type of non-invasive coronary calcium screening for the “at risk” population of middle- aged man and women.
And I am sorry that you find our website “cheesy.” I guess having a cheesy website is the fate of all non-profits that have a very limited budget and a volunteer, non-professional staff. Unfortunately, we can’t afford to hire professional web designers who make five or six figure annual incomes. Perhaps you know someone who will volunteer to upgrade our website for free?
I am also sorry that you dislike the fact that Kaneka, a vitamin supplement manufacturer, is a small sponsor of the upcoming luncheon we are giving in honor of Peggy Fleming’s campaign against heart disease. I have recently attended several American Heart Association fundraisers, and I see huge sponsorships of those events by Big Pharma, major hospitals with cardiology centers, and medical equipment sales outfits. Do you also blog against these sponsored AHA events on grounds of conflict of interest? In order for any non-profit to raise money, it must have at least some kind of sponsorship support from the business community–that’s a fact of life.
The bottom line is that I respect your right to engage in good investigative journalism and to protect the public from fraud, but I think you have crossed the line in your latest attack on SHAPE. I felt personally assaulted by it, and I don’t deserve that kind of treatment after all that my family and I have suffered over the last five years and after all the good we have tried to do since our own personal tragedy to save the lives of others.
I invite you to meet with me or any of the other SHAPE Board members and to discover for yourself what dedicated, altruistic individuals we all are. No exceptions. All we want to do is to save lives. Please take a closer, fairer look at us. Please give us the benefit of the doubt until proven unworthy.
Thank you for giving me this opportunity to set the record straight, as I see it, from a perspective that is up close and very, very personal.
It is impossible not to be sympathetic to anyone in JoAnne’s position, and I empathize with her situation and history. I disagree, however, with the notion that an individual situation, no matter how tragic, necessarily provides a privileged perspective that somehow trumps all other concerns, or necessarily offers special insight. We don’t allow the victims of crimes to be judge and jury, and we can’t allow the innocent victims of a disease to decide public health policy, though of course we are all obligated to try to understand and consider their situation (this should not be an exercise in callous thought, though undoubtedly some will think it so).
In particular, in the context of SHAPE, I don’t believe that an end or goal that almost everyone will agree upon– preventing heart attacks– justifies the means of taking any action necessary to achieve that goal. Just because preventing heart attacks is a worthy goal doesn’t mean that state legislatures should be making medical decisions, or that a self-selected group should be issuing guidelines outside the usual channels.
By allying itself with a snake oil company like Kaneka, and a medical practice like a “rejuvenation center” whose existence represents the complete contradiction of the altruism that an organization like SHAPE purports to represent, it seems to me that SHAPE hurts rather than helps its stated goal.
One word about CoQ10: in a followup letter to me, JoAnne noted, correctly, that there are a number of clinical trials that are investigating CoQ10, and there are many legitimate researchers and physicians who believe that it may have a real role to play in medical practice. But the point is that until the evidence is firm, and until the ratio of benefit and risk is known more precisely (and if there is real benefit then there is always real risk too), a substance like CoQ10 should not be used outside a clinical trial and should certainly not be promoted for its health benefits by dubious companies. CoQ10 may or may not be snake oil, but those who sell it to gullible and desperate consumers are snake oil salesmen.
In her followup letter to me, JoAnne also wrote that the SHAPE program is justified because it does “no harm” and would “save many lives each year.” This goes to the core of the issue. The fact is, every procedure and intervention is associated with costs and potential harmful effects. Even if one could imagine a diagnostic procedure that cost nothing and had no side effects like radiation, we would still be faced with the problem of false positives. Massive screening programs will inevitably lead to an explosion of interventions and procedures, and these will be costly, and some of them will certainly have a less than ideal outcome. Of course we all would have liked to have saved JoAnne’s husband, but the final cost must be determined not by raw emotion, but by carefully considered public health policy.
The day may come, and perhaps even soon, when widespread screening becomes acceptable policy. The American Heart Association and other legitimate organizations have made clear that they are hard at work evaluating and considering these type of issues. People who are genuinely interested in preventing heart attacks would do much better to offer their support to an organization like the AHA than to an organization like SHAPE.