Top Executives Vow to Improve Health Disparities among Patients with Multiple Myeloma
Oncology nurses are often the main point of contact for newly diagnosed patients with cancer. We have the opportunity to ensure that each person starts their journey with equality and equity on their side.
Medical equality, equity, and disparity were the focus of this year’s Reuters Events Total Health USA, a well-known national medical conference I had the honor to attend.1 Health care leaders came together to share insight and solutions to some of America’s broken health care systems. As an oncology nurse for more than 2 decades, I especially appreciated the concern about increased mortality rates among African Americans with multiple myeloma (MM).
Marc Harrison, MD, president & CEO of Intermountain Health Care, and Kathy Giusti, Founder & Chief Mission Officer of the Multiple Myeloma Research Foundation (MMRF), delivered an authentic presentation uncovering the negligence of this gap in care. Since both these powerhouse CEOs are MM survivors, the conversation became quite passionate. At one point, Giusti grinned at the moderator and said, “This is the joy when you have two patients doing a fireside chat who live with a death sentence.” Here, I will share the hope for improved health equity as seen through the eyes of these top executives.
Equality Vs Equity
Although both words sound similar, they are relatively different. Health care equality simply means that the opportunity for proper treatment exists, whereas health care equity involves tailormade plans designed specifically for an individual’s unique needs. Unfortunately, many believe that if there is equal opportunity for those diagnosed with cancer, there is also equity. Sadly, this is not the case. Dr. Harrison noted that it was difficult as an affluent, White male and CEO of a major health care system to get the care he needed when fighting MM. He acknowledged that accessing care is even harder for both people of color and financially disadvantaged individuals. Therefore, although a healthcare organization may offer lifesaving MM treatments, the capability (financial, social, economic) to implement those treatments is anything but “equal.”
Uncovering Why More African Americans Die From Myeloma Than Caucasians
Giusti described a pivotal moment in MM research with the launching of the CoMMpass Study (NCT01454297) over a decade ago.2 The significance of the study came from the large number of African American involvement. According to Giusti, the goal for any clinical trial is to have at least 20% Black participation to represent this population accurately. The CoMMpass trial had an unprecedented 17% African American participation rate.
However, this led to startling data revealing that Black patients with MM had a lower genomic risk profile than White patients—yet were dying at twice the rate. After much investigation, Giusti described, “Their access to triple and quadruple therapy or even a stem cell transplant was much lower, and as a result, it was the access to the most cutting-edge therapies that was the problem.” In fact, if Black patients received equal and equitable MM treatment, their outcomes would be as good or better as other ethnicities.
How to Improve Health Disparities in the African American Population
Firstly, Giusti believes that “the best equity officers are often CEOs who are truly passionate about the topic—and set a clear message to the company that health equity is a priority.” Secondly, she speaks about how crucial retrieving health data is. How can we understand MM and other diseases if the patients with these conditions are not in easily accessible databases?
She points out that if Black people with MM are not in registries, they will not have the opportunity to be located and guided to progressive clinical trials that improve survival. Harrison recognizes that Black patients with lower incomes are not seen in big, fancy academic centers. Instead, he suggests these companies are “taking care of as few poor people as possible,” leaving community-level health systems to care for the underprivileged. Both speakers fervently agreed that health care systems need to reveal where these patients are. It’s imperative that clinical research organizations (CROs), pharmaceutical companies, and NCORP share where these folks reside and are being treated.
Thirdly, once high-risk patient populations are identified, an infrastructure needs to be created to help alleviate the burden of getting patients into registries and clinical trials. Asking staff that is already overworked to review records and get these folks onboarded is burdensome. Giusti suggested creating a foundation at the community level armed with “coordinators, community liaisons, and navigators is crucial to successfully obtaining and distributing data.” Lastly, she believes patient education is critical. When equipped with the correct knowledge, patients are empowered to make well-informed health decisions.
It Takes Grit to Change
During the fireside chat, Giusti’s laid-back presentation was nicely complimented by Harrison’s bulldog approach. Her professional activism, along with his demands for improvement, inspired many viewers to be change agents. In fact, after reminding the audience that one-third of Americans are rationing medications because they can’t afford them, Harrison directly addressed the pharmaceutical companies.
He challenged them to evaluate their overly priced products, stating, “It’s unfair for Americans to bear the disproportionate burden for the cost of these products when the rest of the world benefits. We have poor Americans achieving poor health outcomes because of how much healthcare costs, and that’s a tragedy in the richest country in the world, and it has to change.” In addition, Giusti believes that creating private/public partnerships between profit and nonprofit organizations could be essential to decreasing health disparities.
Oncology nurses are often the main point of contact for newly diagnosed cancer patients. We have the opportunity to ensure that each person starts their journey with equality and equity on their side. Since the first step in resolving medical disparities is acknowledging them, we must stay informed about how our patients are affected by these inadequacies. From there, we remain committed to reform by creating custom-made resources and providing innovative education to staff and patients. As Harrison proclaimed, “Poor patient outcomes based on someone’s demographics is intolerable.”
- Harrison M, Giusti K. Fireside chat: Spotlight on improving equity and inclusion. Presented at: Total Health Reuters Events; September 2022; Chicago, IL.
- The MMRF CoMMpass Study. Multiple Myeloma Research Foundation. Accessed December 17, 2021. https://bit.ly/3sgk2ey