Jack Aiello, Myeloma Advocate Extraordinaire

Posted: Jul 15, 2024

Patient Stories

It’s hard to find a multiple myeloma patient who was as involved or influential as Jack Aiello. Called “patient advocate extraordinaire” by Cure Today, Jack led myeloma advocacy, education, and support on an international level.

A horrible backache led Jack to his multiple myeloma diagnosis in 1995. His children at the time were 16, 14, and 10. Though originally given a prognosis of just a few years, he received the miracle of celebrating 50+ years with his wife, walking his daughters down the wedding aisle, and bouncing his grandchildren on his lap. There was no greater joy to Jack than his family.

Jack was a pioneer patient, being one of the first to receive thalidomide as a myeloma treatment. Jack received tandem autologous stem cell transplants which didn't work, and an allogeneic transplant (rarely used in today’s myeloma) allowed him to have a long remission beginning in 1998. He would watch subsequent myeloma therapies unfold over the course of three decades.

After nearly 30 years of living with myeloma, Jack peacefully passed on Saturday, July 13th, 2024. His cause of death was not his myeloma but other health conditions.

A Tireless Advocate

Jack was a long-time Myeloma Support Group Leader for the International Myeloma Foundation (IMF) in the San Francisco Bay Area and was recently added to the IMF's Board of Directors.

He was also an active member of the Patient Advisory Board for the HealthTree Foundation, a member of the IMF’s Global Myeloma Action Network, and a volunteer and advocate with the Multiple Myeloma Research Foundation (MMRF).

Intentionally involved in the myeloma scene, he was also a patient advocate on scientific review committees such as the NCI Symptom Management and Quality of Life (SxQoL) Steering Committee and the NCI’s Patient Advocate Steering Committee (PASC); and was a member of the SWOG Cooperative Group Myeloma and Patient Advocacy Committees; an Emeritus Board of Director of the Patient Empowerment Network; a participant at Stanford’s Scientific Review Committee; and a volunteer for the LLS First Connection and Cleveland Clinic Fourth Angel programs.

Jack participated annually in the International Myeloma Working Group (IMWG) and the American Society of Hematology (ASH) Meetings.

He often shared his thoughts on multiple myeloma through his active “X” (Twitter) account.

Jack believed in multiple myeloma clinical trials, did his best to improve processes, side effects, and patient quality of life by participating in the scientific advisory board. He strongly encouraged patients to enroll in trials appropriate for them to forward myeloma research.

Throughout his myeloma journey, he also fundraised hundreds of thousands of dollars for multiple myeloma research projects across many organizations.

Tributes to a Dear Friend

Jack's absence will profoundly affect the myeloma community. Several of his colleagues have contributed to this article to honor and remember their beloved friend.

Jim Omel, MD, is a fellow myeloma advocate and widely known as Jack's best friend. He shares:

Jack Aiello was one of the most qualified and successful people to ever lead an IMF support group. His large San Jose, CA group is highly educated, has excellent speakers, and interesting monthly meetings.

I knew that about Jack when we first met at an annual ASH (American Society of Hematology) meeting close to 20 years ago. I told Jack, however, that he had much more potential than just to be a great support group leader. I explained that he needed to become a myeloma Cancer Research Advocate.

He needed to work with the NCI (National Cancer Institute) cooperative group leaders who design myeloma trials and also needed to learn how to recruit new patients for trials. Jack could give patients important input as to how clinical trials are designed, and he could tell the NCI how to make clinical trials acceptable to frightened patients wondering what treatment to choose. I assured Jack that he did not need an MD degree to do this important work.

Jack took my suggestion seriously. He educated himself and joined SWOG when a myeloma committee position became available. He did such a good job with new studies and proposed protocols that the NCI recognized his worth. Jack was invited to, and served on, the NCI Myeloma Steering Committee for two terms (six years). This is both a great honor and a big job, requiring board members to compare, evaluate, and vote on every NCI-related clinical trial in the USA.

As time went by, when Jack returned to ASH he saw and heard updates about the very trials he had discussed and voted on. When he wrote his fabulous post-ASH reports Jack explained the trials which were productive and most helpful for patients because he had had a part in designing those trials. Jack knew the PI (principal investigator) of each trial personally and talked with him or her freely.

Jack took my challenge and ran with it. I helped him get started, and we reviewed a few trials together along the way, but he did it himself! Jack became one of the best myeloma research advocates we’ve ever had!

HealthTree CEO and Founder Jenny Ahlstrom remarks:

Jack was one of the best mentors and friends that has ever existed in multiple myeloma. He advocated tirelessly for himself and for his myeloma peers. I was so fortunate to meet Jack and he was gracious enough to mentor me in advocacy as well as mentoring so many others in how to involve the patient voice in research.

Jack always asked the most pointed questions and was no nonsense. He was a doer and a pusher of progress. His knowledge about myeloma was extraordinary and he took every opportunity possible to share that knowledge with others in so many ways. His early treatment of Thalidomide affected his legs, making it physically challenging for him to attend meetings and conferences, but he was there at every meeting tirelessly working on behalf of the advancement of the myeloma field for his peers.

Jack was a key and vocal member of HealthTree's patient advisory board. He was a dear friend and perfect example of how we should live our lives regardless of our challenges. His passing leaves a hole in our hearts and in the myeloma community.

Cindy Chmielewski shared more than a decade of friendship with Jack. She states:

Jack was a fierce advocate, caring mentor and a dear friend. Jack’s wit always put a smile on my face. I will miss him dearly, but his spirit will live on.

Jack's tireless advocacy allowed him to make lasting friendships with those working in the pharma industry.

Chad Saward from Kite Pharma, and formerly with BMS and Celgene, shares:

I have had the privilege of knowing and working with Jack for over 15 years. Jack has participated as a member of patient advisory committees to help my organization be patient centric. Jack reviewed study protocols, informed consent forms, patient materials, position statements and more. There has been a strong sense of trust between Jack and I which I believe allowed Jack to ask difficult questions and challenge when things needed to be challenged.

Jack had an excellent understanding of science and research and always wanted the clinical development process to address patients' unmet needs. In the end, what I am most proud of is that for well over a decade I have called Jack my friend. I will miss him dearly.

Fatima Scipione, formerly of Takeda Oncology and now with Blueprint Medicines, said:

Jack was truly one of a kind. Meeting him for the first time meant you had to earn his approval, but once you were "Jack-approved," you were embraced into his circle. His intelligence and pragmatism were remarkable, complemented by his sharp, wry sense of humor that always kept you on your toes. Jack had a unique ability to inspire those around him to become better advocates. He could hold his own with any oncologist and took great joy in engaging with them to advance the field of myeloma and strive for a cure.

I am deeply grateful to Jack for holding me accountable and responsible in our advocacy work within the industry. His influence made me better, and I will always cherish the numerous lessons he imparted. Most of all, I will treasure our friendship. Jack adored his family and grandchildren, and his face would light up whenever he spoke about them.

The world has lost a hero. Rest in peace, Jack.

Scott Campbell from Takeda Oncology adds:

I am deeply saddened to learn of Jack's passing. I had the honor of meeting Jack in 2013 during an Ambassador Summit, and I have had the privilege of working with him in various capacities since then. Jack's presence commanded attention, and his words carried wisdom and insight that resonated with all who were lucky enough to hear him speak.

Beyond his remarkable advocacy work, Jack was a devoted father, and I was fortunate to consider him a mentor.

We thank Jack for his tireless service to the multiple myeloma community and wish Nell and his family and loved ones peace during this time of great loss. Jack will be sorely missed.

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