Patient Advocate Extraordinaire

Jack Aiello is a leading patient advocate in multiple myeloma on an international level.

We know Jack as the leader of the San Francisco Bay Area Multiple Myeloma Support Group, which is known worldwide as a very informed and sophisticated group that stays abreast of all the latest research and advancements in treatments for myeloma. This is all because of Jack Aiello and his dedication to serving the myeloma community.

Jack has given advice and counsel to countless patients with myeloma and their families. He takes special care to give personal, ever-so-patient guidance to individuals with a new diagnosis. This one-on-one guidance is extremely helpful and, in many cases, literally lifesaving. Several support group members jokingly refer to him as “Dr. Jack” because he seems to know as much as or more about myeloma than many medical doctors.

In 1995, Jack received a diagnosis of myeloma. Since then, he has had stem cell transplants and participated in clinical trials that have brought him to remission, even if only for a short time. However, ultimately, he had a full allogenic (donor stem cells) transplant, resulting in a long-term remission.

At that point, Jack could have walked away from myeloma and picked other interests to spend his time on. Instead, for over 20 years, he has devoted enormous amounts of time to helping others.

The cumulative effects of 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.

While he has long-term side effects, Jack’s spirit remains high and he is very much involved with cancer advocacy organizations such as the International Myeloma Foundation, Multiple Myeloma Research Foundation, the Leukemia & Lymphoma Society and the Myeloma Crowd. He also served on myeloma committees and meetings, offering his patient perspective to the National Cancer Institute, SWOG Cancer Research Institute, BMT Clinical Trials Network and the Stanford Cancer Institute’s Scientific Review Committee.

Jack also interviews myeloma specialists forthe Patient Power website and video series. He dutifully attends international meetings of specialists, including annual Global Myeloma Action Network summits, and American Society of Hematology, American Society of Clinical Oncology and European Hematology Association meetings, to gather new findings and share with other patients. This careful, diligent parsing and dissemination of vital information is Jack’s hallmark.

Jack also works as a political advocate, lobbying in Washington,D.C., for myeloma research support, and for almost two decades now, as a fundraising advocate.

For 10 years, his annual personal fundraising goal has been $50,000, an amount he always approaches and sometimes exceeds. All the funds go to patient education efforts.

Jack’s greatest impact on the myeloma community is in making us all informed patients. As he puts it, “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.” In a recent interview, Jack said, “Hope comes from knowledge and knowledge comes from education."  

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