Checkpoint inhibitor-related toxicities and patient advocacy: Who will stand up?
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I recently had the pleasure of attending a symposium at the Cleveland Clinic that featured an outstanding review of immune-related adverse events, and I was reminded of how far we have come in the decade since I first became involved in the evolution of this disease class.
For rheumatologists, this topic — which is covered elsewhere in this April issue of Healio Rheumatology by Alexa Meara, MD, a rheumatologist who spends the majority of her time caring and studying irAEs — represents a critically important group of disorders. In the early days, they seemed so rare that many of us who first started to speak on the growing field would routinely ask for a raise of hands as to how many practitioners in the audience had heard or seen of such a case. Flash forward to the present, and checkpoint inhibitors are now indicated for the majority of incident cancer cases, while the incidence of clinically significant irAEs is more than 30% in the general population and more than 50% in patients with autoimmune disease. As such, the question now should be, ‘Who hasn’t seen such a case?’
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I am proud to say that rheumatologists at academic centers across the world have played key roles in both the care of and research into irAEs, and we at Healio are committed to continue covering this topic in depth as new data arise.
However, for this commentary, I want to share of few of my thoughts about the pre-meeting that I attended, which dealt with the issues of patient needs and advocacy, as well as the question of who is going to stand up for these patients. These are people who are often desperate for new and effective — and hopefully lifesaving — therapies, but who also face the specter of a whole new family of toxicities that they have never heard of, which sound very scary, and for which they need significant educational and emotional support.
Attending the advocacy session moved me and has left me wondering who — both now and in the future — will step up to aggressively meet the challenge of irAEs? Who will support the growing body of patients concerned about and/or suffering from the adverse effects of these powerful agents?
Let me start by saying I am a major supporter of the use of checkpoint inhibitors in cancer patients wherever they may offer the prospect for prolonging life, if not curing their disease. During these past 10 years, I have seen so many miraculous recoveries that I do not need to be further convinced. On the other hand, I have also seen a remarkable array of immunologic toxicities ranging from the mild to the fatal, and can only imagine how patients struggle weighing the risks and benefits as they consider, and then embark, on such therapies.
At the session, I heard powerful anecdotes from patients who are confronted with these difficult decisions and challenges. They are desperately searching for other patients and resources to help the next generation confront the uncertainties of untoward toxicities to potent immunotherapies. There were also representatives from patient advocacy groups such as the Global Healthy Living Foundation — an organization well-known to rheumatologists for the help they render to our arthritis patients — who were expressing their willingness and interest in supporting patients with cancer confronting immunotoxicity.
There was also a highly committed group of clinicians, many of whom were rheumatologists, who are doing everything in their power to organize health care professionals to study these toxicities, improve their management, and support patients confronted by their challenges. These efforts are embarrassingly underfunded for now, yet still this groups presses on. I was moved by their commitment.
I will finally raise the question of where is Big Pharma in the effort to fill this void? The pharmaceutical industry deserves tremendous credit for its investments in the development of advanced immunotherapeutics, yet at the same time there is no question in my mind that industry has shied away from meaningfully supporting patient advocacy, or helping fill the gaps in medical research and education surrounding these toxicities.
I will note that cancer care pharmaceuticals constitute a $60 billion-per-year industry, leaving me wondering why they are not more actively supporting efforts for patient advocacy surrounding irAEs. I also will point out that the funding opportunities for basic and clinical research into irAEs has been minimal, as has been the support for educating practitioners across a broad array of specialties on how to recognize and manage these new diseases. Given that this is such a small ask, I will not venture to question the industry’s motivations or concerns but rather make an appeal to their shared interests in the needs of our patients. These are my thoughts on the subject. What are yours? Please share your thoughts with me at calabrl@ccf.org or at rheumatology@healio.com.
- For more information:
- Leonard H. Calabrese, DO, is the Chief Medical Editor, Healio Rheumatology, and Professor of Medicine, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, and RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic.
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