Although multiple myeloma survival rates have improved over the past 20 years, the survival gap among socioeconomic groups has widened.
In 2021, more than 34,000 Americans received a diagnosis of multiple myeloma, a number that has been fairly consistent over the past 20 years, according to the National Cancer Institute. The good news is that during that time, survival rates have improved.
What’s the bad news?
The survival gap among socioeconomic groups has widened.
How is Socioeconomic Defined?
Mark A. Fiala, an instructor at Washington University School of Medicine in St. Louis and a researcher who focuses on access to care and related issues for multiple myeloma and other cancers, says the term “socioeconomic” is poorly defined.
“We all know what socioeconomic status is, but there’s not a pure definition of it,” Fiala says. “It relates to a person’s financial situation and (as an example) their ability to withstand the onslaught that cancer brings, particularly multiple myeloma.”
Fiala says people who are able to continue treatment may have better insurance with lower deductibles, money in savings, or access to charities and organizations that can help. This is true but only part of the picture. The definition of socioeconomics also goes beyond finances.
According to Dr. Karen Winkfield, executive director of Meharry‑Vanderbilt Alliance and the Ingram Professor of Cancer Research at Vanderbilt Ingram Cancer Center in Nashville, Tennessee, the definition of socioeconomic status includes a person’s occupation and education.
“We know that socioeconomic status is the greatest driver of health outcomes period,” says Winkfield, who also is a radiation oncologist specializing in the treatment of blood cancers. “We know that, but there are also things like physical environment and literacy rates — not just whether a person can read, but also health literacy — that are important.”
And when investigating socioeconomic gaps, race shouldn’t be overlooked.
Catherine Marinac, an assistant professor of medicine at Harvard Medical School and Dana‑Farber Cancer Institute in Boston, is trained as a cancer epidemiologist. Her focus is on factors that influence outcomes in multiple myeloma and other plasma cell disorders. She points out that older and minority patients do not get the same benefit from emerging multiple myeloma therapeutics as younger nonminority patients.
Each of these factors — financial, demographic and racial — plays into multiple myeloma outcomes.
Lynn McLean, a family physician on health leave who lives in Calgary, Canada, received a diagnosis of multiple myeloma in November 2021 at age 60. However, securing the right treatment is proving to be a challenge.
“I did not expect to have to make the decision about whether to pay for an upgrade to a different drug protocol that is standard first line of care in the (United States of America) but not in Canada,” McLean explains. “The idea of a national standard for treatment sounds good; I just don’t agree with the current choice.”
McLean believes the treatment plan for patients with multiple myeloma needs to be upgraded. If she has to pay for the four‑drug regimen, including Darzalex (daratumumab) and Revlimid (lenalidomide), which is becoming the first line of defense in the U.S., it will cost approximately $140,000 in Canadian dollars (approximately $110,000 in U.S. dollars). She has insurance to help pay some of the bills and is using her retirement savings along with funds donated through her GoFundMe account.
“Without that I’d be destitute,” McLean says. “I don’t have masses of savings to divert easily to these additional drugs, and my drug plan doesn’t pay for them.”
According to Fiala, financial toxicity hits patients with multiple myeloma especially hard because unlike most cancers that go through an acute treatment phase that ends, multiple myeloma is a chronic condition that continues from diagnosis to end of life. Furthermore, most patients are older than 70 and many live on fixed incomes that make it difficult to pay for expensive treatments.
In these instances, some doctors, according to Fiala, ask patients how they’ll pay for their medications. The challenge, however, is that patients’ financial situations can change quickly depending on annual deductibles, maximum out‑of‑pocket charges, status of their disease, relapses, new tests or treatments, and even everyday life. Sometimes, for instance, a car needs to be repaired, and the unexpected expense may make it difficult to afford treatment.
“There are copay assistance programs,” Fiala says. “But (most) don’t solve the problem. It gets a patient access or services, but in a couple months they’ll be back in the same situation.”
This heavy financial burden can affect treatment.
“People may not be able to take their medications if they have higher copays,” Winkfield adds. “Not taking medications regularly is problematic because that may prevent or delay eligibility for a transplant. And we know that those who get transplants following a first complete response have longer remissions than those who don’t. All of these things can compound one’s ability or inability to take care of themselves. And that obviously is going to impact outcomes.”
Difference in Demographics
In 2003, Joan Rodriguez was a 38‑year‑old dental hygienist living with her husband and son in Boston when she received a diagnosis of monoclonal gammopathy of undetermined significance (MGUS), which can be a precursor to multiple myeloma.
She started treatment at Dana‑Farber Cancer Institute, and when she received a diagnosis of full multiple myeloma in 2019, she underwent an autologous stem cell transplant. Now Rodriguez takes Darzalex and Revlimid.
Since her health coverage includes Medicare Part A (a monthly premium isn’t paid if a patient or their spouse has paid Medicare taxes for a certain amount of time while working) and MassHealth (insurance offered to qualifying individuals and families living in Massachusetts with benefits that may directly or help pay for part of health insurance premiums), her medical costs are low. Moreover, Rodriguez benefits from being within close proximity to Dana‑Farber.
However, many might not experience this same benefit.
Living in a neighborhood with low socioeconomic status is associated with worse rates of multiple myeloma survival, according to a study published in CA: A Cancer Journal for Clinicians.
Winkfield points out that multiple myeloma symptoms can be nonspecific and some people who do not have consistent health care may not identify the signs.
“The patient might feel fatigued,” Winkfield says. “They might have a little bone pain. And so, if you’re not used to being involved in the health care system, if you do not have a primary care provider, you might not notice some of these things. You might not have routine blood work that could show you have anemia or kidney dysfunction.”
Assumptions About Race
According to the American Cancer Society, Black men and women are twice as likely as their White counterparts to develop multiple myeloma. Black women are twice as likely to die of the disease, whereas the number is slightly less for Black men.
The reasons for this are complex.
“Doctors make assumptions about you,” Rodriguez adds. “They look at this Black woman with a low income and state’s insurance and think: What’s going on here? My first doctor tried to make me think my pain was psychological and not physical. I told someone in patient relations that I wanted a different oncologist and they told me I had to stay with him. But I said, ‘You’re telling me that if I don’t see him, I can’t come to the institute?’ Then I got a new doctor.”
Rodriguez solved this problem, but the process was intimidating, and she found it especially hard to tackle while she was in treatment for cancer. So what are institutions and doctors doing to reduce racial bias and discrimination in the medical system?
“The biggest thing is building trust,” Winkfield explains. “And this is relation‑ship building. There’s no trick to it. Physicians, institutions, and the medical and health care systems themselves have done so much to disenfranchise individuals. It’s now our time to turn around and say: We acknowledge that we’ve not always been there, but here we are now. What is it that you need? How can we help to build trust? We’re tapping into community‑based organizations and empowering them to assist with recruitment, retention and, in some clinical trials, access to care in general.”
Another reason why Black patients with multiple myeloma don’t fare as well is that there are fewer Black patients enrolled in clinical trials.
“The innovation of targeted novel therapeutics enrollment in clinical trials has become supremely important,” Marinac says. “Even though minorities make up 20% of (patients with) multiple myeloma in the U.S., their accrual rate in research studies is considerably lower.”
Enrollment in clinical trials is important for multiple reasons. First, it’s needed so research organizations can gather a diversity of data to study the safety and efficacy of new drugs, but also, Marinac points out, trials can provide access to themost innovative cancer therapies that are not yet standard of care, and the drugs are generally paid for by the sponsor of the study.
Winkfield believes the best solution involves rethinking health care in the U.S.
“I know it’s scary; I know it’s hard,” Winkfield says. “But do we consider health care a right? Or is it only for a privileged few? And if it is a right then what are the ways we need to redesign our health care systems to make sure it’s equitable for everyone, including individuals from rural backgrounds, those who live on (Native American lands) or those who might be in underserved communities?”
Fiala says universal coverage is a good place to start, but also points out that many countries with publicly funded health care still find outcome disparities in patients with multiple myeloma.
“It’s been observed in countries like Australia, Sweden and Canada that patients with lower socioeconomic status still do worse,” Fiala says. “And these are places where access should be equal based on coverage. But there are things that aren’t fully accounted for beyond being able to pay for the treatment. Many multiple myeloma treatments are (given intravenously) and patients come in several times a month and transportation can be a problem. There are a lot of complications that factor into the equation.”
These outcome disparities, however, may be opposite within the Veterans Health Administration (VA). In 2019, researchers accessed the VA’s national records and identified 15,717 patients with multiple myeloma. At the VA, Black patients with multiple myeloma under age 65 had better survival rates than their White counterparts. For patients over 65, the median survival rate was similar between Black and White patients with multiple myeloma.
“We don’t find disparities based on socioeconomic status, by race or by anything along those lines in the VA because it is a 360‑degree coverage system,” Fiala explains. “If you don’t have transportation, they’ll send a car for you. It is a more complete program. And that’s the only place we don’t see these disparities.”
In the meantime, Marinac would also like to see outreach efforts expanded so that patients can easily access information on where they can find specialized myeloma treatment centers and clinical trials. Resources such as the Multiple Myeloma Research Foundation, Myeloma Crowd, and the HealthTree Foundation offer some of this information. She also says that continued use of telemedicine beyond the COVID‑19 pandemic may help provide some solutions for reaching rural and underserved communities.
Rodriguez wants to give patients with multiple myeloma a message of hope and encouragement.
“You just have to keep advocating for yourself,” Rodriguez says. “You have to value yourself. If you feel you’re not being treated well, if you have a question or this doesn’t feel right, or if you’re being mistreated, you have the right to go and get someone else to help you and listen to you.”
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