Facts about B. cepacia and the CF Foundation's Event Participation Policy
What is Burkholderia cepacia complex? (Burk-HOLD-er-ia Sa-PAY-shah)
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).
It is important to note that — in general — the species that grow in the lungs of people with CF differ from most of those found in the natural environment. However, all species of B. cepacia have been recovered from the sputum of people with CF. These bacteria were only first reported in people with CF in the 1970s.
B. cepacia bacteria are 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.
Standard infection control practices reduce the risk of infection. B. cepacia poses 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 with this germ.
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How does B. cepacia impact the health of someone with CF?
There is variation on how B. cepacia infection affects someone with CF. Researchers do not yet know why some people with CF are more likely to get B. cepacia than others.
In many people, this infection may not worsen lung disease. In up to one-third of people infected with B. cepacia, the rate of lung decline appears to be slightly faster. However, for a smaller number of people, B. cepacia can cause rapid decline in lung function. This leads to more severe lung disease and maybe death.
Among the different species of B. cepacia, some may be more harmful than others. The CF Foundation is working with researchers to learn more about B. cepacia and to identify new treatments.
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What are the most likely ways of getting infected with B. cepacia from other people?
People with CF can get B. cepacia from others who have these bacteria, either by direct contact through bodily fluids, such as saliva and sputum, by shaking hands, or even indirectly from touching objects with the germs, such as sinks, doorknobs and tissues.
Medical evidence shows that most people with B. cepacia get the bacteria from casual contact with others who are infected. This usually takes place in social settings, such as eating together, at educational programs/events, in exercise facilities, as well as in hospitals. In some cases, B. cepacia was not found in the person’s lungs for up to two years later. In other cases, it is not known how someone with CF got B. cepacia.
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How can someone reduce the chance of getting B. cepacia?
At a CF care center, the staff works to prevent the spread of B. cepacia between people with CF by using proper infection control measures. These include frequent hand hygiene or cleaning of hands, limiting close contact between persons with CF, separating people with B. cepacia when admitted to the hospital and seeing them in the clinic 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 germs for people with CF.
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How do you know if you have B. cepacia?
When a doctor or nurse gets a throat or sputum culture from a person with CF, it is handled differently in the laboratory to enable finding B. cepacia if it is there. Your doctor has results of your cultures. Ask your CF care center what your last sputum culture results showed.
The CF Foundation worked closely with the Centers for Disease Control and Prevention (CDC) and experts in CF and B. cepacia to establish the best way to find B. cepacia in CF sputum. All CF Foundation-accredited care centers have these recommendations to be able to detect B. cepacia.
Additionally, the CF Foundation supports the B. cepacia Reference Laboratory 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. These ongoing efforts to improve the effectiveness of the laboratories in detecting B. cepacia is but one example of why it is important to be seen at an CF Foundation-accredited care center.
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What is the CF Foundation’s policy on the participation of people with B. cepacia at its events and meetings?
The CF Foundation states that individuals with CF who have had a confirmed positive sputum culture for Burkholderia cepacia complex shall not attend CF Foundation events, meetings or offices.
The CF Foundation can identify alternative means for individuals with B. cepacia to participate.
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Why does the CF Foundation have a policy to exclude people with B. cepacia from events, meetings and offices?
The first documented cases of people with CF getting B. cepacia from others with the disease happened in a casual setting in the late 1980s. However, concerns about the spreading of B. cepacia had been raised before in the context of "CF camps."
The CF Foundation believes the risks of B. cepacia and potential impact on the health of those with CF is significant.
As we learn more about the risks of B. cepacia and how people get it, we are compelled ethically and legally to take stronger steps to minimize the risk of 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 at CF Foundation fundraisers, planning meetings, visitors to offices, as well as volunteers at CF Foundation chapters.
Other organizations that have implemented this type of policy, such as the Cystic Fibrosis Worldwide and the United States Association of CF Adults (USACFA), have found it to be well received.
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Is the CF Foundation policy discriminatory to people with CF who have B. cepacia?
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% of people with CF are adults and many people have full-time careers and families.
However, the existence and persistence of B. cepacia threatens to undermine many of our successes. It is unacceptable to lose one life to B. cepacia when how it’s spread is known and can be minimized. While we recognize the value of friendships among those with CF and regret these drastic measures, B. cepacia infection knows no limits.
The CF Foundation can legally exclude people with CF who have had B. cepacia to safeguard the health of the larger CF community. We must take strong steps to minimize the risk of exposure to B. cepacia for all people with CF as we continue to search for a cure for CF and treatments for B. cepacia.
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If I or my child gets B. cepacia, how can I continue to participate with the CF Foundation?
Our website has ways to participate, from web-based fundraising tools to the latest information about CF. You also can call your local chapter to learn other ways to help find a cure for CF. We continue to seek new ways to enable you to continue to participate since you or your child will not be able to attend CF Foundation events, meetings or offices. We welcome your input and ideas for alternative ways to participate.
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What is the CF Foundation doing to find new ways to treat B. cepacia?
The CF Foundation is supporting research on B. cepacia 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.
In addition, basic research is underway to describe the differences between the specific B. cepacia complex bacteria. 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, investigate their spread, and store samples for future research studies. This laboratory enables scientists to learn more about how B. cepacia causes infection and to help identify new treatments in people with CF.
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How many people with CF have B. cepacia?
According to the CF Foundation’s 2009 National Patient Registry, 2.7 percent of all people with CF receiving care at CF Foundation-accredited care centers have B. cepacia, although this percentage varies across centers.
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Where can I learn more about B. cepacia?
Contact the CF Foundation at (800) FIGHT CF or info@cff.org for more information on this policy and for alternative ways to participate in CF Foundation-sponsored activities.
Also, watch the CF Education Day Webcast, “Germs, Infection Control and People with CF” or read “Respiratory - What You Should Know About Germs” on the CF Foundation’s website.
For answers to your medical questions, contact and talk with your CF Foundation-accredited care center.
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Conclusion
The CF Foundation’s Burkholderia cepacia complex 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 and the ways to minimize the spread.
We are seeking new ways to treat B. cepacia. However, for now, it is imperative that the community work together to uphold this policy. Together, we can control these bacteria and make the impact on our community less problematic.
We welcome your ideas on ways to address the safety issues of B. cepacia and ways to include people with CF who must live with these bacteria in our mission.
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Updated 04/05/2011
