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Burkholderia cepacia FAQs What is the Burkholderia cepacia complex? (Burk-HOLD-er-ia Sa-PAY-shah) The Burkholderia cepacia complex (B. cepacia) consists of several species of bacteria that are found in the natural environment. Some of these species threaten the health of people with cystic fibrosis (CF). There are about 17 different B. cepacia complex species. The ones most often found in people with CF are:
B. gladioli, although not a member of B. cepacia complex, is another Burkholderia species that can be found in the lungs of people with CF. Burkholderia bacteria are often resistant to many antibiotics, which makes them difficult to treat once they infect the lungs. However, some species may be successfully treated with combinations of antibiotics. Basic infection prevention and control practices reduce the risk of getting or spreading an infection. These bacteria pose very little medical risks to healthy people. However, some people who have a serious illness (e.g., cancer, AIDS) may be at risk of an infection from these bacteria. How does B. cepacia complex species affect the health of someone with CF? How B. cepacia complex species affect people with CF varies. Researchers do not yet know why some people with CF are more likely to get B. cepacia complex than other people are. In many people, infection with B. cepacia complex may not worsen lung disease. In up to one-third of people infected with B. cepacia complex, the rate of lung function decline appears to be slightly faster. However, for a smaller number of people, B. cepacia complex can cause a rapid decline in lung function and health. This leads to more severe lung disease and maybe death. Among the different species of B. cepacia complex, some may be more harmful than others, e.g., B. cenocepacia and B. dolosa. The CF Foundation is working with researchers to learn more about the B. cepacia complex and to identify new treatments. How do people with CF get infected with B. cepacia complex? It is not always known how people with CF become infected with B. cepacia complex. Research has shown that people with CF can get B. cepacia complex from others who are infected with these bacteria. The germs spread either by direct contact, such as kissing, or indirectly from touching objects with the germs, such as doorknobs. This can happen in social settings, such as events or meetings. In some cases, shared B. cepacia infection was not found in the lungs of a person with CF until two years after being exposed to someone else who was infected with this germ. For many people with CF, infection with B. cepacia complex cannot be traced back to exposure to another infected person. In these cases, infection is believed to have occurred by exposure to Burkholderia in the natural environment. How can a person with CF reduce the chance of getting B. cepacia complex? At a CF care center, the staff works to prevent the spread of B. cepacia complex between people with CF by doing infection prevention and control measures. These include frequent cleaning of hands, wearing gowns and gloves, separating people with B. cepacia complex when admitted to the hospital and seeing them in the clinic in different locations or on different days. CF Foundation-accredited care centers also follow strict procedures when cleaning clinic rooms, pulmonary function labs and respiratory therapy equipment to reduce the risk of spreading germs. Please ask the CF care center staff about their efforts to minimize risks of getting or spreading germs between people with CF. How do people know if they have B. cepacia complex? When a doctor or nurse gets a throat or sputum culture from a person with CF, it is handled differently in the laboratory to help find any B. cepacia complex species. Ask your CF care center about the results of your last throat or sputum culture. However, medical evidence shows that all people with CF could have germs that might spread to others with CF. Plus, sputum cultures may not find all germs that could spread among those with the disease. The CF Foundation supports the Burkholderia cepacia Research Laboratory and Repository at the University of Michigan, Ann Arbor. Care centers can send sputum cultures there to confirm and identify the specific species of B. cepacia complex. What is the CF Foundation’s policy on the participation of people with B. cepacia complex at its events, meetings and offices? The CF Foundation states that individuals with CF who have ever had a confirmed positive sputum culture for any species of the Burkholderia cepacia complex shall not attend CF Foundation events, meetings or offices. Learn more about the Foundation’s Infection Prevention and Control Policy. Why does the CF Foundation have a policy to exclude people with B. cepacia complex from events, meetings and offices? The first documented cases of people with CF getting B. cepacia complex from others with the disease happened in a casual setting in the late 1980s. The CF Foundation believes the risks of B. cepacia complex and the potential impact on the health of those with CF is significant. As we learn more about the risks of B. cepacia complex and how people get it, we are taking these steps to reduce the risk of people with CF getting or spreading the infection among people with CF. To ensure the healthiest environment for the CF community, we believe this strong position is necessary. The policy affects the participation by individuals with CF and B. cepacia complex at CF Foundation fundraisers and planning meetings, visitors to offices as well as volunteers at CF Foundation chapters. Other organizations have implemented this type of policy, including Cystic Fibrosis Canada and the Cystic Fibrosis Trust in the United Kingdom. Is the CF Foundation policy discriminatory to people with CF who have B. cepacia complex? The CF Foundation believes it must take this strong position as it is in the best interest of the overall health of people living with CF. Since the CF Foundation began in 1955, we have come a long way in understanding and treating CF. Over that time, the median life expectancy has increased from infancy to the late-30s. The quality of life for people with the disease also has improved. More than 47 percent of people with CF are adults and many people have full-time careers and families. The CF Foundation can legally exclude people with CF who have had B. cepacia complex to safeguard the health of the larger CF community. We must take strong steps to minimize the risk of exposure to B. cepacia complex for all people with CF as we continue to search for a cure for CF and treatments for B. cepacia complex. If I or my child gets B. cepacia complex, how can I continue to participate with the CF Foundation? The CF Foundation's website offers ways to participate, from online fundraising tools to webcasts on living with CF and the latest research. You also can contact your local chapter to learn about other to support the Foundation's mission. We continue to seek new ways for people with B. cepacia to participate. We welcome your input and ideas. What is the CF Foundation doing to find new ways to treat B. cepacia complex? The CF Foundation is supporting research on B. cepacia complex to find new ways to prevent or get rid of lung infections caused by these bacteria in people with CF. Some researchers are studying whole new classes of antibiotics to fight B. cepacia complex bacteria. In addition, basic research is underway to describe the differences between the B. cepacia complex species. The CF Foundation supports the B. cepacia Research Laboratory and Repository at the University of Michigan, Ann Arbor. This lab is doing basic research on these bacteria. The laboratory is a resource to the CF medical community to identify B. cepacia complex species, investigate their spread and store samples for future research studies. Also, This laboratory enables scientists to learn more about how B. cepacia causes infection and to help find new treatments for people with CF. How many people with CF have B. cepacia complex? According to the CF Foundation’s 2011 National Patient Registry, 2.6 percent of all people with CF receiving care at CF Foundation-accredited care centers have B. cepacia complex. This percentage varies between care centers. Learn more about Burkholderia cepacia complex and infection prevention and control:
The CF Foundation’s infection prevention and control policy seeks to improve the health of the CF community. It can only be successful if everyone with CF, their families and friends learn the risks of B. cepacia complex and other CF germs and how to reduce their spread. Updated 04/30/13 | |||||||