ASH 2023: How Financial Toxicity is Affecting Myeloma Patients and Their Families

Throughout the past couple of days, you have seen our website fill up with important articles about exciting, advancing myeloma research. 

These advances benefit the long-term survival and quality of life of multiple myeloma patients and benefit all in the myeloma community. 

However, lifelong administration of costly myeloma therapies can lead to significant financial toxicity for many multiple myeloma patients, a problem that’s unfortunately becoming more common across the nation (and the world). Did you know a typical frontline treatment can cost $200,000 to $600,000 per year? 

Financial Toxicity in the Myeloma Community 

Financial support services such as nurse navigators, financial advocates, social workers, and myeloma financial coaches do exist. These resources can offset healthcare costs by accessing patient financial assistance programs.

Unfortunately, we often see these programs and services underused due to a lack of referrals and patient or caregiver reluctance to discuss financial issues (often seen as a taboo topic). 

Researchers at the University of Pennsylvania wanted to address this prevalent issue and find the answer to the following questions: 

• Is there a way to improve the likelihood of myeloma patients/caregivers accessing financial support programs, and how do we do that? 
• Does accessing financial support keep patients and their loved ones from experiencing financial toxicity? 

Study Details 

The University of Pennsylvania researchers assessed 315 myeloma patients, 193 of whom (61%) consented to participating in the study. These were adult patients with multiple myeloma who were receiving systemic treatment at the University of Pennsylvania from February to December 2022. 

122 patients did not want to participate in the study due to reasons such as: not interested, burden of participation or wanted to think about (but never reached out again). 

These consenting patients completed the Comprehensive Score for Financial Toxicity (COST) questionnaire the researchers created. This baseline survey assessed socioeconomic and demographic factors, cost-coping behaviors, quality of life (QoL), and satisfaction. 

Based on the COST questionnaire results, 106 of the 193 patients (~55%) were found to be at risk for financial toxicity and were randomized to either be in the financial intervention program (41 patients) or continue on with standard-of-care financial support (42 patients). Several patients at this time decided they did not wish to participate, thus explaining the lower numbers randomized (83) versus chosen to randomized (106). 

The randomized patients were an average of 65 years old, 53% female, 39% nonwhite, 78% college-educated, and 51% earned ≤$60,000/year. Within the randomized patients, 34% of the population lived alone, an unexpected statistic the researchers were interested to see. 

The non-randomized (low-risk) arm contrasted with 8% non-white pts. 

Despite all randomized patients being insured, 55% reported that myeloma treatment costs posed a significant financial burden. Many (46%) were on lenalidomide containing regimens. 

As part of the intervention program, nurse navigators assessed financial and transportation barriers to care by telephone, performed proactive outreach to the Financial Assistance and Social Work departments, coordinated resources, and followed up with the patients on monthly phone calls. 

After four months of the randomization, all 106 patients in the study took a final survey that was similar to their original questionnaire. 

Study Limitations

There were some limitations to this trial, included but not limited to: 

Participants

• English-speaking and literate participants only 
• All patients within the trial were insured 

Telephone-based intervention 

• Difficult to reach some patients 
• Time-intensive 

Nurse Navigator Work Burden 

• In addition to her normal job of being an investigator, her responsibilities with this clinical trial added about 8 hours to her week. 

There are plans to replicate this study to include larger populations, especially including those who are illiterate or underinsured (or uninsured). If these studies are to be conducted, more funding to support a larger nurse navigator staff or some other means of intervention would need to be applied to make the work burden reasonable on those conducting the study. 

Study Results 

To compare the results, as their primary outcome, the investigators examined the original COST score of the questionnaire and compared it to the new COST score. 

• The original mean (baseline) COST score was 14.4 in the intervention group versus 16.0 in usual care. 
• Most patients had financial support services in use, with a higher proportion using services already in the usual care group (76%) versus the intervention group (51%).

After the 4-month follow-up (median follow-up was actually 4.9 months):

• 17% of the usual care group had received financial support
• 95% of the intervention arm had received financial support
• The intervention arm had a greater (but non-significant) improvement in COST score (mean 5.7 increase) compared to usual care (mean 3.5 increase)

As part of the secondary outcome results: 

• There were no significant changes in cost-coping behaviors, quality of life, or satisfaction between the two randomized arms. 
• There was a significantly higher number of financial assistance applications submitted among patients randomized to the intervention arm (34%) compared to the usual care arm (12%).
• Patient feedback indicated the intervention financial program improved understanding of financial support services and reduced stress.

Another interesting observation: 

• The randomized patients (106) showed an average improvement of 4.6 in their COST score, this was significantly different from the non-randomized low-risk group’s mean worsening of -15.8 in their cost score at follow-up. 

Conclusion 

In this study, the University of Pennsylvania researchers confirmed that most patients with myeloma experience financial hardship and are at risk of financial toxicity despite having insurance. 

Through proactive identification of at-risk patients and the intervention of financial support from people like nurse navigators and/or social workers, financial hardship can be potentially reduced. 

As a myeloma patient or caregiver yourself, you don’t have to suffer financially.

Although receiving financial support requires proactivity on your part, the rewards are worth it. 

There are many resources available for you, whether you are on government insurance, private insurance, or uninsured. 

Pharmaceutical companies, foundations and nonprofits, and your local specialty center all have grants and funds that can be useful to you. Reach out today and see if you qualify. 

Talk to your healthcare provider about what financial services are available to you. Talk to a social worker at your clinic. If you are only being seen by an oncologist, get a consult at a myeloma specialist center, where you can receive help from social workers and nurse navigators. Become familiar with what resources are available and use them.

Don’t be afraid to ask other people in the myeloma community. It doesn’t need to be a taboo topic if we are all struggling with the same issue.

You can also watch the video below for more information on financial toxicity in the myeloma community. 

Resources

If you don’t know where to get started, connect with a free myeloma financial coach on our website, and they can guide you. A myeloma diagnosis should not equal financial toxicity for you or your loved ones. 

You can also view our financial support page, watch our past financial webinars, or join our Financial Education Group to learn about future presentations.

ASH 2023 Resources

Would you like to watch ASH 2023 myeloma research interviews from the investigators themselves? Click "ASH 2023" here: HealthTree University Conference Coverage

To read other ASH 2023 articles, click here: HealthTree 2023 ASH Articles