Kay Kays would have been the perfect tissue donor. But because of basic oversights, science lost out.
Diagnosed with pancreatic cancer 13 years ago, she has lived far longer than the average pancreatic cancer patient, and many researchers would be eager to examine samples she might provide for clues that could explain her longevity and open new treatment avenues.
Recently, she underwent a procedure that involved excising a small piece of lung tissue. Before the surgery, she filled out appropriate paperwork to be a donor. Kays had already volunteered for multiple studies, and is a research advocate for the Pancreatic Cancer Action Network.
“I knew my tissue could be very valuable for pancreatic cancer research,” she said. “But upon waking from surgery, I was told that the needed nitrogen to freeze the fresh specimen was not available, and so it just didn’t happen.”
Kays says that Daniel Von Hoff, Physician-in-Chief at the Translational Genomics Research Institute (TGen) and a leading pancreatic-cancer expert, was greatly disappointed to learn that he had missed access to the tissue removed from her lung.
Rather than do nothing—or sue—in response to the error, Kays decided to become even more involved with building tissue awareness. She joined forces with Barbara Kavanagh, president and founder of the Arizona Myeloma Network (AzMN). Together, they are organizing three workshops this fall for patients and their families as the centerpiece of the Tissue Donor Awareness Project (TDAP).
TDAP is a proactive response to a variety of roadblocks—some purely political, some designed to protect patient rights and confidentiality—that stand in the way of routine tissue donation and frequently prevent the scientific community from conducting the most effective, unencumbered research involving tissue samples.
The TDAP workshops “will be an opportunity for patients to ask a lot of questions,” Kavanagh says. “We need to explain what tissue is, and then we need to talk about why it is so important to research.”
Underwritten by a grant to AzMN by the Arizona Department of Health Services, the workshops will take place in Phoenix (Sept. 15), Prescott (Oct. 13), and Tucson (Nov. 17). They will feature presentations by internationally known researchers and patient advocates, including John Carpten, director of TGen’s Integrated Cancer Genomics Division, and Elda Railey, co-founder of Research Advocacy Network. Kavanagh and Kays say that the invited speakers have enthusiastically embraced the opportunity to meet directly with potential donors.
Rafael Fonseca, a multiple myeloma specialist at the Mayo Clinic in Scottsdale, encouraged Kavanagh to establish AzMN when her husband was being treated for myeloma. He strongly supports her efforts to build patient awareness regarding tissue donations, partly because joining the research process enables patients to feel that they are making a difference.
“More frequently than not, patients know that their efforts will lead to better management and treatments,” Fonseca says. “It is only by studying patient samples, much more so than cell lines or animal models, that we can get a true appreciation of the real disease. It is undoubtedly one of the most important sources of future biomedical progress,” he predicts.
Over the past several years, tissue banking has become a key component in the clinical infrastructure of Arizona’s biosciences sector, with tissue repositories developed by the International Genomics Consortium (IGC); Sun Health Research Institute; and Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center making Arizona a hub for research that draws on tissue study.
Many patients who understand at a basic level that researchers rely on specimens nevertheless lack awareness of what they may donate, how simple it may be to do so, and how crucial it is not to let the opportunity slip away.
The state’s tissue banks, which are accessed by scientists from around the world, include both healthy and diseased tissue, and a broad range of specimens: tumor samples, complete organs, even small amounts of sputum (matter coughed from the respiratory tract).
Kavanagh notes that many patients assume researchers would only have interest in entire organs, or only want to collect diseased tissue. Some patients also assume tissue donation always involves a surgeon wielding a scalpel.
“And that’s one of the great confusions,” Kays says. “We have to clarify for patients that tissue donation doesn’t necessarily require some kind of invasive procedure.”
The TDAP workshops will also introduce practical steps that patients can take if they want to become tissue donors.
One of the most important actions a patient can take, Kavanagh says, is to add to his or her medical record a signed consent form that authorizes tissue donation. Such a form, produced by the National Cancer Institute, will be available to patients at the workshops. While no guarantee of eliminating errors, by signing a consent form patients may be able to prevent the kind of lost opportunity that Kays experienced.
“Even if you have a very good doctor, you really have to speak up; patients have to become the driving force,” Kavanagh says. “We know, through the example of breast-cancer [awareness and advocacy] that patients can push the issue. A lot of people, though, aren’t comfortable self-advocating, and that’s part of what the workshops aim to assist with.”
Currently, according to Kavanagh, many of the strongest advocates for tissue donation are parents of children with cancer. As caregivers, they feel empowered to support, defend, and speak up on behalf of their children. As legal guardians, they have much greater capacity to do so than do supporters of adult patients. Consequently, roughly 40 percent of tissue donations are from child patients.
Kavanagh says she sees the most opportunity for growth in awareness and stronger self-advocacy among patients from ethnic minority populations. That is one of the reasons the Prescott workshop is being held on tribal land, and why AzMN seeks to improve collaboration with historically underserved African-American, American-Indian, and Latino communities.
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