What can I do to increase awareness of Legionnaires’ disease?

I have personally been infected by Legionnaires’ disease. What can I do to increase awareness of this infection so that others could be spared this terrible disease?

The most important problem that we face as physician researchers in this field is that a startling amount of misinformation is present and scientifically validated information that would allow prevention of this infection is not disseminated by public health authorities. It is a fact that Legionella is commonly found in the drinking water supply of large buildings.

Since the discovery of the source of the organism in 1982 (Stout, N Engl J Med 1982), this important fact has not been exploited for prevention. Most public health authorities are not interested because of the panic and media exposure that it may bring. Likewise, hospitals are afraid of negative publicity, overlooking the fact that if patients learn that they contracted the infection from being admitted into a hospital that did not check their water supply for Legionella that they would not only sue, but they would win.

The one thing that you can do if you have contracted Legionella from a hospital is to ask the following question. Did the hospital have a preexisting policy to culture the water supply? This approach is recommended by the Maryland state health department and Allegheny Health Department (Pittsburgh). However, Denmark, France, and Barcelona, Spain have also established guidelines for hospitals to culture their water supplies. In 2003, after much foot-dragging, the CDC recommended that all hospitals performing bone marrow and solid organ transplants should culture their water supply. Unfortunately, many cases occur in non-transplant patients. Regardless, we feel that all hospitals should culture their water supplies. CDC has argued in the past that it’s expensive, but culture material, including formulation of the Pittsburgh media, is now commercially available, and the cost for materials is probably less than $500 a year. Nevertheless, they have balked at this recommendation.

Hundreds of outbreaks from hospitals have been reported. Nosocomial (hospital-acquired) Legionnaires’ disease is now commonplace and has become a well known complication.

Approaches for preventing any patients from contracting the disease within a hospital have been published by the State of Maryland and Allegheny County (Pittsburgh) Health Departments. Both health departments recommend that the hospital water supply be cultured for Legionella. If Legionella is found, the physicians are informed so that if the patient contacts pneumonia while in the hospital, tests for Legionella should be immediately available in-hospital. This is a matter of common sense. Moreover, if many of the water sites are positive (for example, greater than 30%), the hospitals can disinfect their water supply. Copper-silver ionization is now the most widely used modality and there are a number of reputable manufacturers for such devices.

Inexplicably, a major obstacle to this approach is the Centers for Disease Control in Atlanta, Georgia, which has been very slow in moving forward on this issue. In 1993, CDC guidelines actually discouraged hospitals from performing routine environmental cultures. They claimed that the evidence was insufficient despite that fact that several hundred reports had documented that Legionella could be contracted from hospitals including their own investigations. One of their reasons (which has been convincingly refuted) is that since the organism is ubiquitous, it could exist in hospitals without harming the patients ( Yu VL. Resolving the controversy on environmental cultures of legionella. Infect Control Hosp Epidemiol, 1998). We and others now have presented data to show that as many as 70% of hospitals. In some cities harbor Legionella (in San Antonio, the number is 100%); this information is critical to disseminate to physicians in the affected hospitals.

In summary, the current approach throughout the world, with some exceptions, is to ignore the problem altogether.