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Volunteer Stories

By Crystal Hayduk, Special Writer

In my parents' generation, children died of diseases like smallpox and diphtheria. Now, smallpox has been eradicated and many of the diseases that killed children are vaccine-preventable.

When my oldest child was born, it was common practice to place babies on their stomachs when putting them down to sleep. By the time my second child was born, parents were taught to place their babies on their backs to sleep to reduce the risk of sudden infant death syndrome.

Sometimes I wonder what life will be like for my children. What advances in research will solve today's problems? What diseases that we fear now will no longer be a threat?

My father was a well-read man who commonly began conversations with "they say that ...." His influence was followed by some wonderful nursing instructors who stressed questioning the status quo and basing clinical practice on research results. Thanks to them, I have a great appreciation for research.

Since moving to Michigan in 1986, I have volunteered for a variety of research projects, ranging from simple surveys to clinical trials. My reasons for participating have included the desire for personal benefit, to share my experience as a health care provider, to share my opinion as a citizen, to learn more about myself or my health and to advance knowledge that would ultimately help others.

At times I've been paid for my time and effort as a volunteer, but just as often I've done it purely because I value the potential results and want to contribute to making the world a better place.

When I was a new mother, I volunteered for a study to examine how mothers interact with their babies and determine what risk factors exist for postpartum depression.

A research assistant came to my home periodically to videotape my interactions with my baby girl. She asked questions about my baby and my health and emotions.

I wasn't paid for the study, but when the results were published, I utilized the information in my nursing practice. It felt good to think that I had contributed to the body of knowledge about a common problem.

Two years ago, I volunteered for a study to compare types of flu vaccine. It required a visit to the School of Public Health in the fall to have blood drawn and receive the vaccine or a placebo (it was a randomized study, so volunteers didn't know which they were getting).

Participants had to promise to return for cultures if they developed flulike symptoms. Blood was drawn at a final visit in the spring.

The motivation for that study was simple: Volunteers were paid $100 for completing the study, with $25 for each sick visit.

But I also hoped it would help scientists to learn more about the nasal mist vaccine to benefit my needle-fearing family. It was a proud moment when my children got the Flumist vaccine this year, and, best of all, no tears.

What we take for granted in health care today is the result of research. Those efforts have been successful not only due to the imagination of great thinkers who generate the ideas, but also due to the participation of volunteers who are willing to sacrifice their time and energy to advance knowledge.

Visit www.umclinicalstudies.org or call 1-877-536-4243 for more information about volunteering for research. Imagine how good you'll feel knowing you've played a part in creating a better future.

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Teresa Singh.

Diagnosed with non-Hodgkin's lymphoma in 1996.

When Teresa Singh was diagnosed with non-Hodgkin's lymphoma in 1996, her oncologist recommended the standard course of treatment: a combination of chemotherapy and radiation. But in researching her disease, Singh learned the likelihood of her cancer returning within 18 months was high. And if a recurrence was treated successfully, it was still likely to come back yet again. Standard treatment just didn't seem like the right choice for Singh, whose sons were 2 and 7 years old at the time. So she started looking for other options. "I asked right away about alternatives, but I didn't know what that meant really," Singh said. "I was interested in what was being offered in specialized centers around the country, but I didn't know what I needed was right in my backyard." The right choice for Singh was a clinical trial. Clinical trials allow patients access to potential new therapies, while providing researchers an opportunity to develop better ways to treat cancer. In 2006, 893 patients enrolled in 247 clinical trials at the U-M Comprehensive Cancer Center. The trials span the gamut of cancer care, from new methods of prevention to better means of treatment.

"Clinical trials are the bridge between the researcher's laboratory and real-world clinics," said David Smith, M.D., director of the Cancer Center's Clinical Trials Office. "We can do lots of things to cure cancer in mice, but until we test these methods in a rigorous fashion in people, we don't know." Meeting Dr. Kaminski

When Singh came to the Cancer Center 11 years ago, Mark Kaminski, M.D., a U-M professor of medicine, was working on a study to determine the effectiveness of a new drug he and his colleagues had developed to treat lymphomas. It took a remarkably different approach than chemotherapy: The drug targeted cancer cells specifically, delivering radiation to them while avoiding normal tissue. After doctors determined that Singh's form of cancer made her eligible to participate in a trial to test the experimental drug's effectiveness, Singh was admitted to University Hospital for a few days so that Kaminski and his team could monitor her carefully. She received two injections of tositumomab and iodine I131 tositumomab. On the day after the second injection, Singh could tell by looking at the bulge in her abdomen that her tumor was shrinking. Subsequent CT scans confirmed it: Her cancer was in remission -- and still is more than a decade later. In 2003, the U.S. Food & Drug Administration approved Kaminski's drug -- known commercially now as Bexxar -- for the treatment of some cases of low-grade non-Hodgkin's lymphoma.

"The great thing is that Bexxar wasn't the end of the story," Kaminski said. "The future is looking incredibly bright. When a lymphoma patient comes to me and says, 'My doctor just told me that I have an incurable disease,' I tell them, 'Don't give up.'" Beyond Bexxar

In many ways, Bexxar is the ultimate example of the good that can come from clinical trials. Working in partnership with doctors, patients who are willing to take a calculated risk are helping to develop better ways to treat cancer.

In cancer clinical trials, the goal is often to determine whether a new treatment method works better than the existing standard of care, Smith said. Patients never receive a placebo, or sugar pill, when an effective treatment exits for their cancer. Instead, researchers may seek to determine whether a new drug in combination with standard care is more effective than the standard alone.

All trials are strictly controlled by federal regulations to ensure patient safety. An Institutional Review Board made up of physicians and scientists as well as patients and other members of the community reviews every study to make certain they are well designed, ensure patient safety and do not incorporate unnecessary risks. In addition, at the U-M Cancer Center, investigators meet weekly to discuss patients who are enrolled in clinical trials. "No trial is done here without a lot of people looking over investigators' shoulders," Smith said. The first priority is always to determine what options are in the patient's best interests, Smith said. From there, if a patient decides a clinical trial is the best option, the health-care team provides a full explanation of what will be involved in the clinical trial and answers questions. A consent form documenting the details of the trial -- including the study's approach, the therapy to be tested, possible risks and benefits, and necessary tests -- is provided so patients can discuss their decision with family and friends before signing on to participate. Patients can decide at any time to withdraw from a trial. Since enrolling in the initial Bexxar study, Singh has participated in several other trials to assess the drug's long-term effects. "I always volunteered. I knew I could say 'no,' or 'that's enough,'" Singh said. "Actually, I felt like I was part of a team."

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Connie McNeal

Diagnosed with Breast Cancer lymphoma in 2001.

In 2001, at the age of 45, Connie McNeal went for her annual mammogram which led to a diagnosis of stage 2 breast cancer. McNeal was not a stranger to cancer. Her father, her mother, a sister, and her grandmother all had two types of cancer. McNeal's doctors recommended a lumpectomy, but after much research McNeal chose to have a radical modified mastectomy.

McNeal became an advocate for herself throughout her care by learning about her various options, but she also has had an impact on many other women because she chose to be part of a clinical trial. Even after her oncologist told her that she fit the criteria for the trail participants, she wasn't sure that she wanted to participate. Then her doctor said, "It will benefit people in the future, and it won't be harmful." McNeal is glad that she made the decision to join the clinical trial. She found that the medical staff went out of their way to make it convenient for her, and she enjoyed knowing that she was making a difference. She says, "It is a wonderful feeling to be of help. Maybe this will benefit my daughter or her generation. The goal is working towards the future for a cure. I'm glad to be a part of that." Throughout her diagnosis and treatment, McNeal was a thorough researcher, and she quickly learned that African Americans are under-represented in clinical studies. She says, "Medicine is geared to the people who are studied." McNeal has become an advocate in other ways. As the President of the Sisters Network® Inc, Flint Affiliate Chapter she is committed to the organization's goal of increasing local and national attention about the devastating impact that breast cancer has in the African American community. Chapters across the country are organized by breast cancer survivors who are committed to establishing much needed community breast health services. Like many breast cancer survivors, McNeal's grandmother was diagnosed with colon cancer after her recovery from breast cancer. Now that she is fifty, McNeal has had and will continue getting colonoscopies for the rest of her life. She knows that early detection of cancer can make a difference. As far as mammograms, McNeal says that they're no fun, but they save lives. She knows.

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