The 130th Annual Meeting of APHA

Abstract #36291

Roe Ann Roberts, PhD MPH, Health and Public Administration Programs, Midwestern State University, 3410 Taft Blvd., Wichita Falls, TX 76308, (940) 397-4752, roeanna@rocketmail.com

In 1989, the gene responsible for Cystic Fibrosis (CF) was identified. Family members, people with cystic fibrosis (PWCF) and the medical researchers were elated. Doctors talked about a 'cure' being right around the corner. In 1994, PWCF from around the world still talked expectantly about this cure on a popular on-line support group (n=600). However years passed with no cure, list members became sicker and some died. By 1997, some PWCF began to loudly voice their dissatisfaction with some CF clinics, pharmaceutical companies and the CF Foundation. They began to conduct their own literature searches as they started exploring alternatives. In 1998, these individuals formed an on-line research group (n=170). Some group members were scientists, but many weren't. Yet, they undertook the task of identifying both the functioning of the CF cell and any treatments that might supplement missing cellular functions. Group members quickly identified two possible treatments: glutathione plus sodium bicarbonate (gsh+) and xylitol. Some members began using these alternatives and reported their results to the group. In 2000, other individuals (n=54), less concerned with identifying cellular functions, formed a list whose members seek to identify potentially useful herbal compounds such as Hawthorne. Members from both these groups' often report their discoveries to the members of several larger on-line CF support groups. This paper examines the increasing use of CAM by PWCF, the most commonly used treatments and justifications for their use. It also discusses the breakdown in the treatment partnership between some health professionals and some PWCF.

Learning Objectives: Learning Objectives

• Describe the history of cystic fibrosis research in the last ten years.
• Discuss some of the major physical and psychological effects of cystic fibrosis on both the person and their family.
• Recognize the impact of the failure of researchers to find a promised cure within an established time frame.
• Be able to assess the impact this failure has had on the use of alternative medicines by persons with cystic fibrosis.
• Articulate the importance of persons with chronic diseases being involved in their own treatment decision-making.
• Recognize some of the major alternatives treatments in use by persons with cystic fibrosis and their potential benefits and risks.

Keywords: Alternative Medicine/Therapies, Chronic Diseases

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Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.