While stem cell therapy should not be viewed as a magic bullet, experts say, it's also not necessarily a patient's only option, even if she has exhausted conventional treatment options. "This is just one component of the entire continuum of heart failure treatment," says Patel. "It's the sexiest one, but it's only one component." So to heart failure patients interested in a stem cell trial, he suggests seeking a center where doctors have expertise in all aspects of heart failure treatment, not just stem cell therapy. Major research centers with expertise in heart failure will be able to offer alternative treatments, from implantable devices to surgery.
Yet for heart failure patients who feel they have few options left, finding a study to participate in may seem daunting, a feeling that is often magnified by being sick. Benson looked into the clinical trial he joined after his wife noticed an ad in the newspaper. Another resource is ClinicalTrials.gov, which is the closest thing to a clearinghouse for research related to any disease or condition, not just heart failure. It lists all clinical trials receiving NIH funding, plus some that are not. But the site is not always up to date, and it can take some creative, diligent searching to turn up all the relevant trials.
Patients in search of a trial shouldn't fear going straight to the source. "In my opinion, most patients are far too shy about picking up a phone and starting a line of inquiry," says Losordo. He encourages directly contacting the researchers and nurses listed on clinical trials. Even if Losordo cannot help a particular patient himself, he says he can often point the person to a colleague in the field. "All the people involved in this stuff at medical centers—we want to help folks out."
People considering volunteering for a trial may want to weigh how easy it would be for them to travel to one treatment center or another. Less of a factor: the scientific question a given trial is seeking to answer. Different trials are designed to address different medical unknowns, including how best to deliver the stem cells to the heart, exactly where to inject them, and how to keep them in place (surprisingly, they don't just stay put; a significant percentage travel to other places in the body). Researchers are also studying which kinds of stem cells are most likely to work, whether those from a person's own bone marrow, blood, or heart itself, say, or potential "off the shelf" stem cells products that come from neither the patient nor directly from a donor. "No evidence out there yet would point a person in one direction or another," Losordo says. The field is simply too new.
For Brent Benson, the choice to volunteer for the clinical trial in Salt Lake City was a relatively simple one. His trusted cardiologist and friend, knowing the severity of Benson's disease, had told him, "You don't have a thing to lose; you don't have much time left," Benson recalls. And by the measures most important to him, he says, having his stem cells injected into his heart has proved significantly worthwhile. Says Benson: "I've gotten my sense of humor back."