Meet the Advocate: Jack Aiello

Jack Aiello, SWOG’s long-time myeloma advocate, was first a patient with myeloma. Diagnosed in 1995, he underwent numerous, often toxic treatments that took a toll on his body. 

This is a man who has had three stem cell transplants, including an allogeneic stem cell transplant (performed on his birthday, no less) that replaced his immune system with one grown from stem cells taken from his sister. At the time Jack had his in 1998, allogeneic transplants had a 40 percent mortality rate for myeloma, and they were often followed by a long bout with graft-versus-host-disease, which Aiello battled for several years.

Ultimately his myeloma went into remission, and he has remained off treatment since then, happily without lingering effects of graft-versus-host-disease. But the cumulative effects of both neuropathy from drugs such as thalidomide, and fibrosis from radiation, sapped his leg strength to the point where in 2002 he had to leave his job as vice president of marketing for a Silicon Valley tech firm and take medical disability.

Tech’s loss was our gain, and Jack’s encore career as a patient advocate was launched.

“I still had a brain in my head that still worked,” he says, “so I contacted three advocacy organizations – Leukemia and Lymphoma Society, International Myeloma Foundation, and Multiple Myeloma Research Foundation – and asked if they needed volunteers.” From that start, he’s worked at one time or another with almost all of the major myeloma research and advocacy organizations. 

Before becoming the research professional we know, however, he served in other types of advocacy roles: as an advocate supporting other patients (he leads the myeloma support group that helped him when he was first diagnosed), as a political advocate lobbying in Washington for myeloma research support, and for almost two decades now, as a fundraising advocate. For the last 10 years, his annual personal fundraising goal has been $50,000 dollars, an amount he always approaches and sometimes exceeds. In fact, his campaign for this year ends at the end of this month, and he’s about $40,000 into his goal. If you’d like to help send him over the top – and to see some adorable grandkids – visit his fundraising page (all the funds go to myeloma patient education efforts, and no, he did not put me up to this). 

Jack moved into the advocacy role we know him best in – research advocacy – around 2005, when he was invited to join the NCI’s myeloma steering committee, replacing one of the first two patient advocates to sit on that committee.

One of the key skills he’s honed on scientific review committees of this sort, he says, is “how to ask questions in a way that allows the person I’m asking to educate me and others in terms of what’s important about a particular trial.” He sees this sort of continuous education as essential for patient advocates but also for patients who are advocating only for themselves:

“The crux of being a good patient is to be educated in your disease – especially in myeloma, where there are so many new treatments coming out. There are side effects that go along with them. And there are clinical trials that preceded them.”

Jack says he’s a firm believer that clinical trials are a great thing for patients, citing 13 new drug therapies that have been approved for myeloma over the past 19 years.

He correspondingly believes that patient advocates are a great thing for clinical trials. In fact, the most important clinical trial he has seen in myeloma was one initiated by a patient advocate. Research advocate Michael Katz – who Jack replaced on the NCI’s myeloma steering committee years ago – proposed and championed the ECOG E4A03 trial, which demonstrated that the high dose of dexamethasone that was then a mainstay of myeloma treatment could be lowered significantly. The study was stopped when an interim analysis found that the lower dose worked just as well as the higher but caused fewer side effects and resulted in fewer deaths.

“It was a tremendous drop in dosage,” Jack says (and he had served time on the higher dosage), “and patients thoroughly appreciated the results of that trial.”

Having been SWOG’s myeloma research advocate since 2013, Jack completes his second – and final – term in that role late next year. He’s not worried about having lots of free time to fill. For example, for the past year he has been on the NCI’s symptom management and health-related quality of life steering committee, which never lacks for work. Nevertheless, he says, “I’m going to be sorry when my term does expire. Maybe I’ll find out if I can do something like with the NCI steering committees – can I be on a different SWOG committee?” That just may be an idea whose time has come.
 

Jack’s an active tweeter. Follow him at @JackMAiello.