Rob Miani joined the MMRF team as Chief Financial Officer in 2016. Most recently he was the Vice President of Finance and Corporate Controller of Aptuit, LLC, a global contract research organization providing integrated early discovery to mid-phase drug development services in the pharmaceutical industry. Rob has over 20 years of leadership experience in the private and public sectors, holding managerial positions in the renewable energy, private equity, Internet and technology industries, including Davenport Newberry, Oak Investment Partners and INT Media Group. He began his career with Arthur Anderson LLP in the Assurance and Business Advisory Services Division. Rob is a CPA and received his BS degree in Accounting from Fairfield University.
A Conversation with Myeloma Nurse Practitioner Amy Pierre
First off, tell us a little bit about yourself. Can you explain your job and what it entails?
I am an oncology nurse practitioner that specializes in multiple myeloma. I am also a clinical director in the research organization of Flatiron Health, which is a cancer information technology company. In my role at Flatiron Health, I work with data from oncology patients to help understand their experience so as to better anticipate their needs.
Approx. 32,000 people are diagnosed with multiple myeloma annually in the US, and 20 percent of that population is African American. Are there any known risk factors that are higher in African Americans compared to other populations to explain this difference?
Yes—monoclonal gammopathy of undetermined significance (MGUS), a precursor and established risk factor for the development of multiple myeloma, occurs two to three times more often in African American patients than in Whites. The risk of developing MGUS is two to four times higher in an individual with a first-degree relative with MGUS or multiple myeloma. A higher incidence suggests an ancestral and genetic predisposition to developing multiple myeloma, particularly in individuals of African descent.
Despite its high incidence in African Americans, there are several health care disparities that have been established in the literature for African Americans with multiple myeloma, including delay in diagnosis, delay in initiation of novel therapies, lack of usage of standard of care novel therapeutics, delay in or low usage of stem cell transplantation and low representation in clinical trials. Additionally, African Americans with multiple myeloma have more comorbidities than other racial groups as well as a higher cost of care.
Access to quality care and adequate treatments are just a couple of the barriers facing Black people living with myeloma. At the same time, Black people are less likely to be diagnosed. How do we break down those barriers and ensure more equitable access to care?
Knowledge is power. Diagnosing multiple myeloma in a timely fashion is key. When a Black patient presents to their healthcare provider with renal failure or anemia or back pain, it is imperative to consider multiple myeloma as a possible cause of these symptoms to ensure there is no diagnostic delay. It is also imperative for clinicians to understand that there are existing healthcare disparities in initial diagnosis, treatment, supportive management, and resources for African Americans with multiple myeloma that can negatively affect outcomes. Tailoring your care plan to break down these barriers is the next step. Examples include facilitating access for patients to receive care by myeloma specialists, recognizing stem cell transplant eligibility at diagnosis, assisting adherence to therapeutics and supportive care and counseling patients on the value of clinical trial participation.
Similarly, in an article, you’ve cited cultural competency as an important step that healthcare providers and institutions can take to help build trust. Can you explain more? In your experience, what are some of the approaches that care providers can take to build trust in their Black patients?
Unfortunately, our country has a history of unethical medical treatment of minorities. We can build rapport and trust by recognizing our own implicit bias that exists and addressing it, showing respect for cultural diversity, displaying a willingness to learn from patients, having an ethnically diverse healthcare team, investing in and gaining the trust of those who assist your patient in decision making, and avoiding stereotyping and generalizations.
Finally, what are the signs and symptoms people should be aware of if they think they may have myeloma? And, what’s the most important thing you want people in the Black community to know about myeloma and the actions they should take?
The Black community should know that multiple myeloma is the most common blood cancer affecting African Americans. The most common presenting symptoms of multiple myeloma are fatigue and bone pain related to the anemia and bone disease caused by multiple myeloma. If someone is diagnosed with anemia or kidney disease or musculoskeletal pain, it is important for them to have a dynamic discussion with their healthcare provider and ask if multiple myeloma has been assessed as a possible diagnosis. It is essential for Black patients to be cognizant of the disparities that exist for African Americans with multiple myeloma so that they are able to be their own best advocate to receive optimal and timely care for successful outcomes.
