Multiple Myeloma and African Americans

Overview

National Black Caucus of State Legislators (NBCSL) in conjunction with the Multiple Myeloma Research Foundation (MMRF), Pfizer, and AMGEN is providing the following resources to its members in order to highlight the severe impact of the disease upon the African American community. We hope to engage, educate, and reach more African Americans in order to improve early detection and manage outcomes. For much more information, please visit www.themmrf.org

What is Multiple Myeloma?

Multiple myeloma is a type of blood cancer that affects plasma cells. In multiple myeloma, malignant plasma cells accumulate in bone marrow — the soft, spongy tissue at the center of your bones — crowding out the normal plasma cells that help fight infection.

These malignant plasma cells then produce an abnormal antibody called M protein, which offers no benefit to the body and may cause tumors, kidney damage, bone destruction and impaired immune function. The hallmark characteristic of multiple myeloma is a high level of M protein in the blood.

Early signs and symptoms of multiple myeloma can include weakness and fatigue caused by anemia and kidney problems, increased risk of infection, bone pain and fractures.
MMR 21017 Awareness Infographic 2 PRINT TO MMRF 093021 Page 1

MMR 21017 Awareness Infographic 2 PRINT TO MMRF 093021 Page 2

Multiple Myeloma and Black patients

Approximately 32,000 people are diagnosed with multiple myeloma annually in the US – 20% of that population are Black patients.
Black patients are typically diagnosed at an earlier age and have a higher rate of precursor conditions such as MGUS.
It is the leading blood cancer in the Black community.
Despite the high incidence of myeloma in Black individuals, many are diagnosed later when compared to other myeloma patient populations.
Black patients are twice as likely to die from the disease compared to other patient populations because they are less likely to receive the current standard of care, even though research suggests that Black patients are less likely to have high-risk disease.
Racial disparities, social and financial health disparities, and lower access to quality care have all contribute to poorer patient outcomes.
When Black myeloma patients receive standard of care treatment, they can achieve the same results as other myeloma patient populations.

What action should I take?

Early detection is key to saving lives.
Be aware of multiple myeloma symptoms and advocate for your own care. This can result in better outcomes and improve life expectancy for every patient.
Talk to your healthcare provider if you have concerns.
Cancer screenings are vital to managing your health—even during the pandemic. If you have any of the symptoms of multiple myeloma, ask your doctor if you can be tested for it.

Multiple Myeloma/COVID-19 and Colin Powell

Secretary Colin Powell was a myeloma patient himself and was vaccinated against COVID-19, the outcome of his situation should not deter other immunocompromised patients from working with their doctor to consider vaccination.
Research has found that myeloma patients produce fewer antibodies to the vaccine; approximately a quarter of patients produce no antibodies after two doses. Certain treatments contribute to the vaccines being less effective in myeloma patients.
Myeloma patients and the elderly (over 65) are a vulnerable population to COVID-19. That means that even as others let their guard down, they must be vigilant and continue to take precautions even when fully vaccinated. To support these individuals, the MMRF offers these tips and insights:
Vaccination is recommended for myeloma patients in conjunction with extra precautions: Avoids crowds, social distance where possible, and wear a mask.
Get a booster when eligible
Talk to your doctor to determine how best to reduce your risk of COVID-19

To help address questions that myeloma and other patients may have regarding vaccination, the MMRF is supporting critical research to understand the factors that contribute to a lack of response to the vaccine.
The MMRF strongly advocates for myeloma patients to take preventative measures against COVID-19 to protect their health
Cancer Screenings OpEd

The MMRF provides additional information and resources for patients here.

Cancer Screening OpEd- This is a Sample OpEd for Legislators

Cancer Screenings: More Important Than Ever

The COVID-19 pandemic has disrupted our lives. Many of us have lost family members and friends. We have watched them suffer through the torment of the virus. And in some cases, some of you have battled the virus yourself. All of this has been physically and mentally taxing for everyone. But what you may not know, is that the pandemic may be doing further damage in ways we don’t yet recognize.

Sheltering in place is a good way to slow the spread of the virus. But avoiding going to the doctor for annual examinations and cancer screenings may have long term implications for our personal health and could further impact our families down the road.

Cancer, for instance, is best treated when caught early. With fewer people getting screened, more patients run the risk of being diagnosed at a later stage, when the cancer is more serious. This could mean having fewer treatment options and may result in a worse outcome.

Why is this important?

We know that cancer affects African Americans at a disproportionate rate. When compared to Whites, African Americans are more likely to be diagnosed in later stages of the disease. An early diagnosis is even more important for rare cancers like Multiple Myeloma.

Multiple myeloma is not easily detectable and affects more than thirty thousand patients every year. This may sound like a low number, but it is the most common blood cancer in African Americans, and we are twice as likely to be diagnosed with this rare cancer when compared to our white counterparts. We are also more likely to be diagnosed in the later stages of the disease and that makes us more likely to die faster after diagnosis.

Over the past few months, I have learned a lot about this rare form of cancer from the Multiple Myeloma Research Foundation (MMRF). Early signs and symptoms of multiple myeloma can include weakness and fatigue caused by anemia and kidney problems, bone pain and fractures, and loss of appetite or weight loss. If you have any of these symptoms, be sure to ask your doctor to screen for multiple myeloma.

Being aware of multiple myeloma symptoms and advocating for our own care can result in better outcomes and improve our life expectancy. This is why getting cancer screenings is vital to managing our health—even during the pandemic. And that’s why I am sharing this with you, to remember and tell your family and friends.

When African American myeloma patients receive appropriate, timely care and treatment, we can achieve the same outcomes as other myeloma patient populations. The same can be true for other cancers and diseases. Early detection is key to saving lives.

To learn more about multiple myeloma, contact the MMRF Patient Navigation Center at 888-841-6673, or visit www.themmrf.org

About the MMRF

The MMRF is the leading cancer research organization accelerating a cure for each and every myeloma patient.
The MMRF drives next generation treatments to patients, uses data to deliver more precise treatments, and empowers patients with information and resources to extend their lives.
Since its inception, the organization has collected thousands of samples and tissues, opened nearly 100 trials, helped bring 15 FDA-approved therapies to market.

Multiple Myeloma Media Resources

Health Equity Forum on Multiple Myeloma (Feb. 15, 2022) - Click here
Multiple Myeloma Public Service Announcements by NBCSL Members

About CureCloud

In 2019, the MMRF launched and is driving enrollment to its groundbreaking CureCloud direct-to-patient research program. Having data on a critical mass of patients is essential to advancing precision medicine (finding the right treatment for the right patient) and a cure for every patient.
The MMRF aims to enroll a patient population that represents the real-world picture (epidemiology) of myeloma; in particular, this means the MMRF is committed to ensuring 20% of the patients enrolled are Black (1,000/5,000 patients).
The MMRF CureCloud is a first-of-its-kind research study that collects genomic and clinical information from myeloma patients through an at-home consent and testing process.
Every patient who enrolls in the MMRF CureCloud is provided free access to genomic sequencing to help make more informed decisions with their doctors about the right treatment options.
Genomic sequencing is typically only available at large academic medical centers; the MMRF is working to reduce health disparities and improve outcomes for all patients by democratizing access to sequencing technology and data.
CureCloud aims to speed the delivery of precision therapies and a cure for each and every multiple myeloma patient. This means that in addition to those patients enrolled in CureCloud, every patient and their doctor will have access to CureCloud to help them make smarter, data-driven decisions by viewing patients who share common characteristics.
To learn more, visit themmrf.org.