Dawn Chamberlaine had one reaction when she learned of the Legacy Tissue Donation Program that Harry Sanchez, MD, and Marcello DiStasio Jr., MD, PhD, are establishing through Yale Pathology for use by cancer researchers.
“Let me be the first to sign up,” said Dawn, a two-time lung cancer survivor and member of the Patient and Family Advisory Council at Smilow Cancer Hospital. “If you can learn more and develop better treatments, then please – take my tissue.”
Cancer scientists have many avenues for research – including animal models, cell culture, surgical specimens, and standard hospital autopsies – but each has its limitations. The Legacy Tissue Donation Program allows patients to donate tissue for research after their death. They can limit what tissue they donate and change their minds at any time, for any reason. But this final noble gesture has a direct impact on medical research by providing scientists with tissue they can obtain in no other way.
“It’s important to have a wide breadth of tissue to study because we need to understand heterogeneity within the tumor,” said Dr. DiStasio. “Access to all of this tissue from multiple sites, multiple regions of the tumor, is essential to understanding the complete pathobiology for tumor genesis and metastasis formation.”
Dr. Sanchez, Assistant Professor of Pathology and Director of Autopsy Services, and Dr. DiStasio, Assistant Professor of Pathology, are modeling the program after several in place across the country. The idea is to provide researchers with the tissue they need; it is not a tissue bank.
Standard autopsies can encounter delays, often due to consent matters and important family discussions, which can render any extracted tissue less effective for research purposes. The goal of the Legacy Tissue Donation Program is to retrieve tissue within a few hours of a patient’s passing. The procedure is performed quickly but with respect to the donor’s dignity. It usually takes a few hours, is designed to be minimally invasive, and does not interfere with funeral arrangements.
The challenge, the doctors acknowledge, will be getting patients to sign up for tissue donation. It’s one reason they worked with Smilow’s Patient and Family Advisory Council.
“When they presented this idea to the group, one of the people said, ‘This is a no-brainer. If I my cells can help you in any way, sign me up,’” said Dawn, a retired educator and law school administrator.
But Jody Saginor, another Patient and Family Advisory Council member who was caretaker for her late husband Paul during his valiant, years-long battle with myeloma, explained that how and when you approach a patient will be key.
“Just finding a way to connect with people and get them to donate is the biggest challenge,” she said. “Even the phrase tissue donation scares some people. They’re afraid of what’s going to happen to their bodies and they need real reassurance it’s going to be respectful.”
Jody said she understands the approach may have to be different for each patient. Her husband Paul, a father who was in the arts and antique business and was independent and unconventional in many ways, always listened to his doctor because they had a good rapport.
“If his doctor asked, ‘Would you like to meet with this person?’ he would. The doctor wouldn’t necessarily have to sit through the entire presentation but could make the introduction,” she said.
Dr. Sanchez said they plan to work with clinicians and researchers to identify patients who may want to be tissue donors.
“If they are interested, the patient is walked through this very transparent and very thorough consent process. If the consent is given, autopsy retains a copy of it and provides contact information to the family,” Dr. Sanchez said.
When the donor passes, the Legacy program is contacted by the facility or the family. Working with the next of kin, they will assemble their staff as quickly as possible, usually within an hour, and get the process underway within a few hours, Dr. Sanchez explained.
By working with clinicians, they will know each donor’s unique medical history, Dr. DiStasio said.
At the suggestion of Eric Winer, MD, Director, Yale Cancer Center and Physician-in-Chief, Smilow Cancer Network, the program will initially have a narrow focus.
“I think it could be really helpful if we could pilot this in a few areas – getting the clinicians in those areas interested and invested,” Dr. Winer said.
One of the most important pieces of the program, Dr. Sanchez said, is that patients understand how meaningful their donation is.
“You are changing the nature of how we research cancer,” he said. “How can we begin to thank you?”
Every person is unique and not everyone may want to participate in the program, Jody said. But she believes her husband would have signed up.
“I think he always had a sense of, ‘Why am I going through all of this? Is there a bigger picture to all of this I’m experiencing?’ They have made many strides since his illness – and he could see that new medications were coming out, which made him very hopeful. Unfortunately, he didn’t survive long enough to benefit from the advances that have helped some people,” she said.
“When you first get a diagnosis, you’re shocked and absorbed in your own treatment modality. Then you start to meet others and realize there are people in worse shape than you. It's not just you alone who’s going through this, there are people all over the world and right here – and you see that researchers can learn from you. I think it gives you hope, and it gives you purpose. I think that’s what patients lose the most in treatment."