In 1996, at the age of 37, Kathy Giusti was diagnosed with the incurable blood cancer multiple myeloma and told she had about 3 years to live. In the mid-1990s, effective therapies for this second most common blood cancer were nearly nonexistent. Standard of care for myeloma consisted of oral melphalan and prednisone, and autologous stem cell transplantation was still in the experimental phase for treatment of the cancer.

With no new treatments on the horizon, the urgency to buy more time for herself—and for other patients with the cancer—led Ms. Giusti and her twin sister, Karen Andrews, in 1998, to launch the Multiple Myeloma Research Foundation (MMRF, themmrf.org). The short-term goal of the foundation was to raise enough money to fund research grants to attract new scientists to the field to accomplish the long-term goal of extending life and speeding cures for patients.

Having worked in leadership positions in the pharmaceutical sector for many years, Ms. Giusti was confident in scientists’ ability and dedication to pursue breakthrough drug discoveries. However, as a patient, she also knew having access to those discoveries was often hindered by a fragmented health-care system. She was determined to change the experience of patients with the cancer and alter the trajectory of myeloma from an almost always fatal disease to a mostly chronic or even curable one.

I feel like myeloma is the one disease model we were able to integrate into our broken health-care system, and it worked.

— Kathy Giusti

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Establishing a New Model of Research

Since the inception of the MMRF, the foundation has raised more than $500 million to fund research in the cancer. It has also established collaborative research models in precision medicine, including the Multiple Myeloma Research Consortium, which has conducted nearly 100 clinical trials, and the CoMMpass^SM study, which maps the genomic profile of patients with newly diagnosed myeloma to clinical outcomes to develop a more complete understanding of patients’ response to treatments, among other research efforts.

This laser-focused approach to research has resulted in more than 15 U.S. Food and Drug Administration (FDA) approvals in new treatments for myeloma and more than tripled life expectancy for patients.¹

In her new book, Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System ­(HarperCollins, 2024), Ms. Giusti chronicles her personal experiences with cancer, first as a patient with multiple myeloma and later as a breast cancer survivor; the toll cancer has taken on her family, friends, and colleagues; her quest to fund research that is transforming myeloma care; and her deep commitment to ensuring that all patients with cancer have a roadmap to finding reliable and trustworthy information, assembling the right medical team, and living well after their diagnosis.

Ms. Giusti, former Chief Executive Officer of MMRF, is a member of MMRF’s Board of Directors and former Co-Chair of the Harvard Business School Kraft Precision Medicine Accelerator, a $20 million dollar program to establish best practices for cure-seeking organizations across all disease types. She has also served on former President Barack Obama’s Precision Medicine Initiative Working Group and as an advisor to President Joe Biden’s Cancer Moonshot program.

In a wide-ranging interview with The ASCO Post, Ms. Giusti discussed how patients with cancer and other life-threatening diseases can overcome a fractured medical system in the United States, become knowledgeable and fierce self-advocates of their care, and learn how to fear cancer less.

Fixing a Broken Medical System

Fatal to Fearless is a brutally honest and deeply personal account of your diagnosis of multiple myeloma and ductal carcinoma in situ breast cancer. It is also a primer on how patients with cancer can navigate what you describe as a “deplorably fragmented, bureaucratic, and exceedingly complex” medical system that does not benefit patients facing serious illness. In the book, Clifford A. Hudis, MD, FACP, FASCO, Chief Executive Officer of ASCO, gives an even more blunt assessment of the problem. “We do not have a system in the United States. No strategic plan for health care. No mission statements. No set of goals. No national agenda.... We do not have a system. Full stop,” said Dr. Hudis.

What needs to be done to fix the broken medical system and improve health care for patients with cancer?

This is an unfortunate situation for patients and their caregivers, and it’s not fair. The health-care system is incredibly fragmented. As a result, patients are left with having to integrate the medical team, including medical oncologists, surgical oncologists, and radiation oncologists, among others, into their care. Coordinating their care, understanding complex treatments, and incurring the financial costs of cancer care are among the biggest burdens patients face.

In the short term, we have to empower patients to have the knowledge, resources, and information they need to make the journey easier on them and on the physicians who serve them. To do that, we have to engage patient navigators, physician assistants, and social workers to help patients understand and manage their cancer journey. It is through navigation services that we will start to generate better data on how patients should be treated to improve their outcomes.

In the longer term, we have to identify the optimal outcomes for our patients, including the effectiveness of their treatments and their impact on their quality of life, and we have to reimburse providers based on patient outcomes. We also have to have more effective strategies in place to prevent cancer, as well as improved screening rates to find cancer early, when it is most curable.

We are not going to change the health-care system overnight, but these steps would give us a start to improving care for patients.

Putting the Onus of Survival on Patients

Fatal to Fearless is divided into your personal experiences with cancer and coping mechanisms and resources for how patients with cancer and other life-threatening illnesses can navigate the medical system to get the best possible outcomes. However, as diagnostics and treatments for cancer become more complex, how realistic is it that patients will be able to take on ever-greater responsibility for their care? And why should the onus be on patients for their survival?

As mentioned previously, regrettably, the onus has to be on patients and/or the caregiving team that supports them. In a survey asking how many minutes oncologists spend with their patients, 46% reported their average time with a patient is 16 minutes or less,² and that is not going to change. Patients have to show up in their physicians’ office using those 16 minutes as wisely as they can. Before every appointment, patients have to be ahead of the game by going to their patient portal and learning the information that is there regarding their most recent tests, so they can immediately ask questions about what the results mean for the next phase of their journey.

The bottom line is that patients have no choice but to get on their game.

This is an unfortunate situation for physicians as well, and they are overwhelmed. You are right, the science is advancing at breakneck speed, but the health-care system is not. Physicians are trying to stay on top of all the progress being made in cancer, but many are treating several different types of the disease. As a result, there is a huge, gaping hole patients have to fill to improve their outcomes.

In the beginning of the book, I advise readers to become knowledgeable about their cancer by going to the leading cancer websites—including ASCO’s Cancer.net, the American Cancer Society’s Cancer.org, and the National Cancer Institute’s Cancer.gov—and by finding a cancer-specific research foundation.

Being Humbled by Cancer

As well versed as you are in being able to navigate a complex medical system, and fortunate to have such a supportive network of family and friends to help you during your years of dealing with cancer, you admit that cancer is a humbling experience. Please talk more about what that means to you.

As a patient, you realize early on that you cannot control your cancer. All you can do is get yourself organized and supported, so you are prepared for the unexpected, including when treatments stop working. The point of the book is to help patients prepare for what is ahead, so when they are riding that roller coaster, they can handle it better.

For example, in the section on “Getting the Right Treatments,” I’m saying this is “go” time; it’s going to be frenetic, and you cannot do it alone. Patients have to reach out to others for support and ask for help with child care, elderly parents, and their life in general. And the reason I say this is because the caregiver burden is so high for some cancers, patients have to be prepared to have as many caregivers as they can.

They also have to be prepared for what happens after treatment. I encourage readers to get help if they are feeling depressed and to know they are not alone. It is also helpful for patients to know they may develop treatment-related secondary cancers, like I did.

Curing Myeloma

You are a co-founder of the MMRF, which has become the model for accelerating research in not just cancer but in other life-threatening diseases as well. As a result of your efforts, myeloma has gone from a terminal disease with a life expectancy of just 3 years to a mostly chronic one that patients can live with for many years and potentially decades. Is myeloma close to becoming a curable cancer?

I feel like myeloma is the one disease model we were able to integrate into our broken health-care system, and it worked. Our success shows that if you could build a research system in which everyone collaborates, and there is team science, progress in cancer happens. So, kudos to the whole myeloma community for that effort.

Based on what is available today, I believe that between the number of FDA-approved drugs and new therapeutics in the pipeline for multiple myeloma, we now have potentially curative treatments for this cancer. The issue for the disease moving forward is understanding how best to use those drugs in combination, in optimal dose, and in sequence to get the best outcome.

We have made the process better for patients undergoing stem cell transplantation, and we have the four-drug regimen DVRd (daratumumab, bortezomib, lenalidomide, and dexamethasone), which is an effective front-line treatment option for patients. Now, we have to see where chimeric antigen receptor T-cell therapies, antibody-drug conjugates, and bispecific antibodies fit into the treatment armamentarium for patients. There is so much potential in these therapies, but we have to better understand utilization and tolerability to make it easier for patients, caregivers, and clinicians. We also have to figure out how to get these resources into the community setting, where everyone will have access to them.

Currently, these drugs are too toxic, they are expensive, and patients have to fight with their health insurers to pay for them. I hope we can speed the progress of more effective therapies for patients and learn what is working and what is not by sharing the outcomes data to understand firsthand who is truly benefiting from these new therapies and why.

Looking Ahead

You are still a board member of the MMRF, but you have completed your commitment as Co-Chair of the Harvard Business School Kraft Precision Medicine Accelerator program. What is next for you?

Now that Fatal to Fearless is published, my next goal is to make sure all patients have access to the 12 what-to-do steps outlined in the book—not only to help them overcome our broken medical system by becoming a knowledgeable and fierce self-advocate, but to thrive after cancer as well. Over time, my plan is to put all that information on my website, kathygiusti.com, so patients can print out the steps and create their own worksheets. I also want the health-care community to know this resource is available, so providers can offer the information to their patients.

Lastly, I still believe our health-care system has to understand what it means to provide truly patient-centered care. The only way that is going to happen is for medical schools to use the information in books like this one in their curriculum.

The book is titled Fatal to Fearless not because I am fearless or there is something special about me. The whole point of the book is recognizing that although cancer is often labeled as a fatal disease, I want patients to fear it less.

If patients understand just a bit about how the medical system works, they will learn how to make it work for them instead of against them. There is no way patients are not going to fear cancer. But if they can arm themselves with the tools they need to achieve their best possible outcomes, they will learn how to live more and fear less. 

DISCLOSURE: Ms. Giusti reported no conflicts of interest.

REFERENCES

1. Multiple Myeloma Research Foundation: Multiple Myeloma Treatment Overview. Available at https://themmrf.org/wp-content/uploads/2023/05/Treatment-Overview_Booklet_2022_012022-1.pdf. Accessed February 6, 2024.

2. Peckham C: Medscape Oncologist Compensation Report 2018. Available at www.medscape.com/slideshow/2018-compensation-oncologist-6009663. Accessed