Woman Shares Personal Story of Clinical Trials Participation

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Before the 1990s, women were excluded from most major medical research studies. The exclusion was based on liability concerns and a historical belief by most scientists that women and men were biologically the same except for their reproductive organs. The lack of research on women compromised the care they received, as doctors and patients had little information about conditions that affect women differently or disproportionately.

The Society for Women’s Health Research was formed in 1990 to change the culture of medical research to make sure that women were included and research results were analyzed for differences between the sexes. Great strides have been made over the last 15 years and important information about women’s health - and how women differ from men - is emerging in areas like heart disease and cancer.

Advances in women’s health care have been made possible by women who have volunteered to participate in research studies. The story of one study participant, Meredith Small of Ithaca, N.Y., is featured in “The Savvy Woman Patient: How and Why Sex Differences Affect Your Health,” a new book from the Society for Women’s Health Research, which is a Washington, D.C. based non-profit research, education, and advocacy organization. The book is an accessible and comprehensive guide to health problems and treatments unique to women of all ages, from child-bearing to care-giving and empty nest years.

"Those of use who have offered our bodies up to science understand that testing on human subjects is the only way that medicine can go forward,” said Small, a Cornell University anthropology professor, who suffers from Interstitial cystitis, a painful condition that causes inflation in the bladder and for which there is no cure and few options to ease the symptoms. “Lab work and animal tests can only go so far in trying to predict what works.”

“Dr. Small is one of millions of American women, who suffers from a medical condition that is often misdiagnosed or for which there are few effective treatments,” said Phyllis Greenberger, the book’s editor and president of the Society for Women’s Health Research. “It is only through research that we can learn more and improve care. Thanks to courageous and selfless women like Dr. Small, we are making progress. I hope her story inspires other women to volunteer for research studies.”

Small’s story appears in the book’s chapter on medical research and how you can find opportunities to participate. Small participated in a double blind placebo-controlled clinical trial that tested a new treatment for Interstitial cystitis.

“Randomized, controlled clinical trials are the most rigorous and reliable research tests available,” Greenberger said. “When you give one group of research subjects the same specific treatment and another group of research subjects a placebo, which is an inactive substance containing no medication, you can determine more precisely the effectiveness of the treatment.”

After the trial, Small learned that she had received the placebo, not the active treatment. Her symptoms never subsided during the trial. Published results of the study showed that the treatment helped 21 percent of the participants, while just 12 percent of those receiving the placebo reported any improvement. Researchers continue to look for more effective treatments. Despite the outcome of the study, Small has no regrets about her participation.

“Maybe all that enthusiastic participation did nothing for my particular bladder,” Small said, “but it did a lot for me. I was treated well, listened to, and I felt like a part of the process. It gave me hope. For that reason alone, I’d offer up my body to science any day.”

Researched and edited by the Society and based on its 15 years as a research advocacy organization, “The Savvy Woman Patient” includes contributions from a team of more than 40 internationally recognized medical practitioners and health experts. In addition to Small’s story, the book features inspiring health stories by celebrities and prominent Americans, including actresses Cheryl Ladd, Kellie Martin and Fran Drescher; Olympic speed skater Bonnie Blair; and Congresswoman Julia Carson of Indiana.

The book covers addiction; asthma and other lung problems; auto-immune diseases; bone health; brain and degenerative diseases; cancer; cardiovascular disease; diabetes; digestive disorders; eating disorders; eye health; kidney, bladder, and urinary tract health; menopause; mental health; oral health; pain; sleep; and sexually transmitted diseases. It also has special sections on the safe use of medication, nutrition, family histories, and the screening tests you need throughout life, the book

http://www.womenshealthresearch.org

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