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Is venous thromboembolism the forgotten disease?
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In its 2003 white paper, titled “Deep Vein Thrombosis: Advancing Awareness to Protect Patient Lives,” the American Public Health Association and the CDC pointed out that venous thromboembolism is responsible for more deaths per annum in this country (about 200,000) than breast cancer (about 40,000), AIDS (about 14,500) and highway fatalities (about 42,000) combined. The incidence of VTE is similar to that of myocardial infarction and stroke, at about 1 per 1,000 of the population per annum. About two-thirds of subjects with VTE present with deep vein thrombosis as the primary manifestation, and about one-third with pulmonary embolism, but these are essentially one and the same disorder. It has been estimated that up to 30% of people with new cases of VTE die within 30 days after presentation.
An American Public Health Association survey of the general public found that about three-quarters of adults had little or no awareness of VTE. Of those who did know something about the disorder, more than half had no knowledge of the risk factors. Fatal pulmonary embolism is unquestionably the No. 1 preventable cause of in-hospital death and remains one of the leading causes of mortality in pregnancy. So why do we as practicing hematologists not seem to believe that this is a national scandal of titanic proportions?
What is the problem?
Is it because we have insufficient knowledge about VTE? I would argue that this is not the case. It is true that we still need to learn more about the epidemiology of VTE; published estimates of incidence and mortality can vary by several-fold, but all agree that the problem is very substantial.
We certainly have learned much about the prevention of VTE using pharmacological and nonpharmacological approaches through well-designed studies, and there is no shortage of professional guidelines summarizing these data in user-friendly formats.
Perhaps the best known of these guidelines is the American College of Chest Physicians (ACCP) evidence-based consensus guidelines, published in the journal Chest every two to three years for about the last 20 years. Other professional societies, including ASCO, have now weighed in to produce their own set of guidelines addressing VTE prophylaxis in patients with cancer. An in-depth cover story in HemOnc Today in November will examine the use, or lack of use, of VTE prophylaxis in this patient population.
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Is the failure to implement existing guidelines related to the lack of professional and/or lay advocacy? Here I believe hematologists must shoulder part of the blame. VTE is a disease that has never really been “claimed” by any subspecialty in the United States, and the de-emphasis of training in benign hematology in many hem/onc fellowship programs over the past 15 years has exacerbated the shortage of experts in hemostasis and thrombosis nationally.
The development pipeline of novel antithrombotic therapies is extraordinarily healthy. Warfarin has been the only orally available anticoagulant for 50 years, and it is currently being used to treat about 3 million Americans; but that is about to change with the expected introduction of newer therapies, which are clearly long overdue. An increasingly greater understanding of the basic mechanisms of coagulation is going to be required of practitioners prescribing these drugs in the future, and if this is not the domain of hematologists, then who should be considered the experts?
In contrast, lay public advocacy and demands for the medical profession to respond to this challenge are advancing and will be further promoted by the surgeon general’s “Call to Action on the Prevention of Deep Vein Thrombosis and Pulmonary Embolism,” announced in September 2008. We would be well advised to prepare ourselves to face the patient being admitted to hospital who asks: “What are you going to do to prevent me from having a blood clot, doctor?”
What can be done?
So what is to be done? First, I would like to see a far more aggressive stance by professional organizations such as the American Society of Hematology, that this largely preventable disorder is the domain of practicing hematologists. Second, I believe there is a need for a major public education campaign; the public ignorance that exists around this issue is simply unacceptable. Furthermore, I believe that a major education initiative targeted at physicians is needed. There is still a perception that venous thromboemboli are a nuisance complication, rather than a potentially life-threatening event.
As yet, it is unclear who will lead the charge on these initiatives, but I hope that we will all offer our support and efforts to a partnership between our professional organizations, patient advocacy groups, and governmental and third-party payer representatives. We simply cannot afford to let this go.
Nigel S. Key, MB, ChB, FRCP, is Harold R. Roberts Distinguished Professor, and Director, Hemophilia and Thrombosis Center at University of North Carolina at Chapel Hill. He is also a member of the HemOnc Today Editorial Board.