Diversity in Healthcare

SEPTEMBER 2018 | FUTUREOFPERSONALHEALTH.COM

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Diversity in Healthcare

Dr. Adela Lente shares her plans for putting higher education within reach for Native American students.

DISCOVER how one patient’s fight with a rare blood cancer is raising awareness for those most at risk.

LEARN how The STARR Coalition is making strides to diversify clinical trials and research.

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in this issue

When research showed African Americans were not getting the best treatment for a certain blood cancer, this organization took matters into their own hands to educate thousands. Page 4

After this pharmacist realized an astounding lack of diversity in his field, he opened up his own pharmacy and hired people of color. ONLINE

When medical school costs the same as a home, low-income students often abandon their dreams of entering the physician workforce. ONLINE

Why African Americans Need to Be in the Know About Myeloma Risk Factors Myeloma is a cancer of plasma cells. A plasma cell is a type of white blood cell found in the bone marrow.

African Americans are more than twice as likely as Caucasians to develop myeloma.

Know the Risk Factors For most people who have myeloma, there are no obvious reasons why they developed the disease.

However, there are some factors that may increase the risk of developing myeloma, including: Race Black people are more than twice as likely as white people to develop myeloma.

Medical History People with a history of MGUS (a condition in which an abnormal protein, known as monoclonal protein or M protein, is in the blood).

Sex More men than women develop myeloma.

Age Most people who develop myeloma are over 50 years old.

Obesity New research suggests that obesity contributes to a higher rate of myeloma.

If you feel like you may be at risk, watch for signs and symptoms, talk with your doctor and learn more about myeloma.

The Leukemia and Lymphoma Society Publisher Jordan Hernandez Managing Director Luciana Olson Director of Sales Shannon Ruggiero Director of Business Development Jourdan Snyder Director of Product Faye Godfrey Designers Chris Espino & John Coutinho Copy Editor Erin Mathis Production Coordinator Josh Rosman Content Strategist Mina Fanous Cover Photo Courtesy of Photographer of Burrell College of Osteopathic Medicine All photos are credited to Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve USA Today.

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The future can be hopeful for African Americans living with multiple myeloma Multiple myeloma is the most common form of blood cancer in the United States among African Americans.

The good news is that some studies suggest that compared to white Americans, African Americans tend to have less aggressive forms of multiple myeloma and may have a better prognosis. If African Americans get the care they need they may be able to live longer with the disease.

The Standing in the Gaap initiative was created to help improve the care of African Americans living with multiple myeloma. Help us Stand in the Gaap and join our community on Facebook today!

For African Americans Living with Multiple Myeloma

Learn more by visiting facebook.com/StandingInTheGaap

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African Americans Are Twice as Likely to Be Diagnosed with This Cancer A lack of awareness surrounding multiple myeloma is costing lives, but one organization is stepping forward to make change.

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ecause multiple myeloma is among the least common types of cancer, it can go misdiagnosed due to doctors’ and patients’ lack of knowledge about the disease.

Among middle-age African Americans, who are at a disproportionately higher risk of this cancer than their white counterparts, this can be especially true.

“This particular blood cancer is more common in men than women and, importantly, African Americans are two times as likely to be diagnosed with myeloma as white Americans,” says Elisa Weiss, Ph.D., senior vice president of Patient Access and Outcomes at the Leukemia and Lymphoma Society (LLS).

“Recent studies show that African Americans are significantly less likely to receive the newest treatments and combination therapies, and more likely to experience treatment delays, including transplant delays, than white Americans. This is particularly true for low-income African Americans. On top of this, African Americans are much less likely to enter a clinical trial than white Americans.

A narrow window Delayed diagnosis is a particular problem, as patients may let symptoms like fatigue, fever, infections and bone pain persist without seeking care and, sometimes, primary care doctors may not notice the warning signs themselves, she notes. “Raising awareness about the disease is critical; when somebody has the disease, it’s important to educate them about the state-of-the-art treatments and how they can get access,” says Weiss, explaining that combination therapy is at the forefront of myeloma treatment.

“Fortunately, education programs, such as LLS’s Myeloma Link program, are trying to change these realities,” says Karen Demairo, executive director of education and integration for the LLS. Myeloma Link is launching in a number of major cities across the country, where LLS works with a wide range of trusted organizations including churches, senior centers and community health centers to raise awareness among African Americans about multiple myeloma incidence and treatment.

“In addition, LLS offers free services nationally and in communities to help myeloma and all blood cancer patients receive professional advice on everything from treatment, financial resources, clinical trials, nutrition and more,” says Demairo. “Patients and caregivers can reach LLS Information Specialists, who are master’s-level oncology social workers, nurses and health educators, for free oneon-one personalized support and information via phone at 800-955-4572.”

Closing the Gap in Care for African-American Cancer Patients This mother of two is working to help others understand a disease that disproportionately impacts her community.

When Pat Conley was diagnosed with cancer in 2004, she remembers thinking: "Multiple myeloma? I've never heard of it before.” The Georgia resident had been seeing a chiropractor for more than a year to manage chronic pain, but when an MRI revealed a mass on her hip, Conley found out she had a type of cancer that is not only the second most common blood cancer in the world, but also twice as likely to affect African Americans than white Americans.

Blindsided "I knew nothing about multiple myeloma,” she shares. “I had no information on my own about what to do. I knew that I needed to just follow the instructions, take the medicine and try to stay faithful and positive."

Thankfully, as one of 10 children, Conley was able to call on her siblings to help provide the 24/7 care the doctors informed her the cancer would require. A connection to the Leukemia and Lymphoma Society (LLS) also proved vital, as they not only helped fund her treatment but connected her to a support group that, over years in both treatment and remission, has offered Conley tremendous comfort. “Support groups are almost as important as the medicine in terms of help through this disease,” she says.

Continued efforts Many new therapies for myeloma have been approved in the last few years, however the disease remains incurable. LLS has invested approximately $100 million in myeloma research since 2009 and more than $180 million in patient support and services. More than 50 percent of myeloma patients live five years or more, up from 25 percent in the 1970s.

However, persistent pain is a common issue among this population, Demairo points out.

Ensuring these individuals have the proper support and education about treatment options is key. n

Fighting on Within a year of her diagnosis Conley received successful tandem stem cell transplants but, despite no longer needing treatment, she felt a calling to help spread information about multiple myeloma to her community.

“African Americans are affected by this disease more than any other group,” she shares. “Yet when I was going to clinics and into the doctor's office, I didn't see African Americans in the office. I didn't see them in treatment.” Now, she serves as a volunteer for Myeloma Link, LLS’s community outreach program to African Americans that launched in March 2017. The goal of the program is to close this gap in knowledge and care, connecting African Americans to support groups and clinical trials, providing financial aid and mobilizing a team of experts to offer information and guidance.

Now, after more than a decade, Conley’s cancer is back. But the mother of two is remaining positive, staying stress-free and viewing the recurrence — which doctors warned her from the start was a likelihood — as a chance to have a larger impact. With the help of LLS, she’s now enrolled in a clinical trial. “It is very important for me that I be a part of the clinical trials,” Conley insists, “because I don't want my children or my grandchildren to have to go through what I'm going through here. If I can help somebody, that old cliché, as I travel on, then my living will not be in vain. And so I think it's really important that we try to be a part of the cure.” n

Melinda Carter

Emily Gawlak

WHY AFRICAN AMERICANS NEED TO KNOW ABOUT MULTIPLE MYELOMA Reverend Veronica Graves Myeloma Survivor & LLS Volunteer Washington, D.C.

Myeloma is a blood cancer. African Americans have twice the incidence of myeloma as white Americans. Recent studies show that African Americans are signiďŹ cantly less likely to receive the newest treatments and combination therapies, and more likely to experience treatment delays.

The Leukemia & Lymphoma Society (LLS) is dedicated to improving access to the best therapies and quality of life among African Americans with myeloma. LLS provides free tools and resources to help patients and caregivers navigate the treatment landscape more effectively and cope with the disease.

Learn more today at www.lls.org/myelomalink.

The mission of The Leukemia & Lymphoma Society is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Find out more at www.LLS.org.

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Diversity in Healthcare Is a Positive Reflection of a Changing Society Patients often value their relationship with their care provider as much as the medical advice they receive from them.

Dr. Adela Lente Wants to Help Native American Youth Pursue Their Dreams With poverty standing in the way of success, children of reservations see limited futures for themselves.

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dela Lente was told by a counselor that she’d never get into medical school. And yet, today, she is a specialized surgeon, and has also become proactive in inspiring Native American youth to pursue their dreams.

A new direction Dr. Lente is lucky in that she has had mentors throughout her life. She grew up on the Isleta Pueblo, an American Indian reservation outside Albuquerque, where change wasn’t embraced and traditions were longstanding. Her grandfather, however, who had little education, encouraged her to go against the grain in seeking a higher education. “He’s the reason I made it so far,” she said.

She was often told she wouldn’t get into medical school, and was instead encouraged to choose an allied health field. However, she found support when she entered into pharmacy school. The college dean was sympathetic to her desire to attend medical school and gave her the tools she needed to apply and earn an acceptance.

Reaching out It was Dr. Lente’s own experiences from struggling in an impoverished community with limited resources that inspired her to help others. She recognizes that too many Native Americans are told they can’t succeed in college or a complicated career, and wants to change that.

“It’s the ones that give up after they’re told they can’t succeed, those are the ones I’m in search of empowering.”

It was this drive to change the stagnation that occurs in areas with limited resources that compelled her to help in forming the Native American Explorers Program, which provides mentors for high school kids in an effort to get them involved with academic fields that they can continue to study in college.

“Many of the participating students have low expectations about their futures,” says Dr. Lente. “No one in their family went to college, so they don’t expect to, either.” She hopes programs like this show Native American youth that they can improve their lives.

“You can do whatever you set your mind to. If you really want to do something, you have to persevere.” n Susan Guillory

Because we live in a multicultural society that is continuously evolving, it would seem logical that diversity in the workplace would be a natural result and reflection of our societal and ideological changes. But it isn’t quite that simple. To some, diversity simply means a variety of different religions, races, ethnicities, sexual orientations, genders, abilities, ages and other cultural characteristics. To others, it goes much deeper.

For many healthcare organizations, “cultural competence” is the goal. That is, the understanding and ability to respond appropriately to the unique combination of cultural variables in the patient population. It’s something that Dr. Teshina Wilson, a family physician from the San Francisco area’s East Bay, is very familiar with.

Dr. Wilson is one of the co-physician leads for the Diversity, Equity and Inclusion committee for Kaiser Permanente in the East Bay. The goal is to provide targeted strategic training for various departments in her organization. “The work,” she says “is all about helping to understand the differences, not just in their patient population, but also in their employee population, and being respectful and mindful of those differences.”

Dr. Wilson also conducts cultural humility trainings to help front desk staff and other front line care team members to optimize their interactions with patients of all backgrounds. It wasn’t something she had planned to do, but she says, “When you have an opportunity to be able to impact change to someone that is looking up from a different level at you, these jobs come with a certain level of responsibility.”

“For me, what was most surprising was that there was likely a fear of speaking about this subject matter. It can make people uncomfortable. It does make people uncomfortable.” But it is precisely that discomfort that makes her trainings so valuable and so effective. “It allows for one to have to do a self-assessment and really look at your own upbringing and beliefs.”

As a doctor of osteopathic medicine, Dr. Wilson also hopes to see a more diverse pool of students entering into her field in the future. “I think that it’s important for each of us to recognize when it is time for us to step up and say I need to reach back and start trying to integrate younger adults into this field.”

At the end of the day, diversity in the healthcare field goes well beyond the hiring process. Encouraging a mosaic of cultural perspectives and building bridges across cultural divides is the best way to ensure that all patients and all healthcare providers feel understood, appreciated and respected. It’s a simple idea, but a very valuable one. n Michael Flocker

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How Clinical Research Trials Are Embracing Diversity and Serving Communities Greater diversity in trial volunteers will lead to better outcomes, and more customized care.

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he STARR Coalition is a nonprofit organization working to bring together thought-leaders within clinical research, pharma and advocacy. By creating a neutral playing field, leaders throughout the industry and advocacy are able to find solutions to complex issues hindering the progress of cutting-edge research, especially in the area of central nervous system disorders. Diversity in research was one of the first topics brought forth by the stakeholders.

A growing movement is building around “patient-centered” clinical research. Patient-centered clinical research broadens the conversation to not only include sponsors and contract research organizations, but also involves the volunteer into every aspect of the trial design. Volunteers become informed collaborators whose investment into a trial goes beyond mere participation — they become team members working toward the overall success of the trial.

This type of process requires the design to incorporate many aspects of the volunteer: ethnicity, race, socioeconomic status, gender, exceptionalities, language, religion, sexual orientation, age and geographical area, just to name a few. By embracing diversity in the trial framework, we open participation to individuals from a broad cross-section of our society — ultimately benefiting outcomes.

Clinical research trials are rooted in the communities they serve. Effective community outreach, community education and enrollment of research volunteers hinges on the engagement of diverse communities. The STARR Coalition members have identified cultural dynamics as a top priority. So while a person may self-identify with a specific race, within this population, their cultural identity will vary greatly based on a wide range of factors: customs, language, family dynamics, peer bias, geographical roots, religious practices and many other subtilties. We are work-

ing with stakeholders from across the industry to create a framework that allows us to plug into any community, in hopes of creating trust in clinical research.

Unfortunately, many medical indications are plagued by stigma. Central nervous system disorders, for example, offer unique challenges. When it comes to mental illnesses, it takes an average of 10 years after first symptoms of a mental disorder appear for a person to seek treatment.

Stigma may be an undercurrent of cultural bias. Recognizing diversity is vital to furthering research and treatment, and is the key to finding cures for diseases.

The STARR Coalition is made up of people like you. We rely on our stakeholders, like Evolution Research Group and others, to drive progressive conversations. n

Luke Kramer, Executive Director, The STARR Coalition