Celgene Combats Multiple Myeloma with ‘Standing in the Gaap’ Program
Kimberly Alexander is passionate about educating her peers in the black community on multiple myeloma. In 2005, her husband Elijah Alexander, the late NFL linebacker, was diagnosed with the disease at the age of 35. He had few symptoms other than pain in his feet. Other common symptoms include fatigue and impaired kidney function.
Although Elijah’s treatments kept him alive for five years, Alexander believes that knowing more about the disease may have kept him alive longer. She said understanding the symptoms and getting an annual physical are important to increasing one’s chances for early diagnosis and proper treatment.
“As in Elijah’s case, sometimes the disease is found when a blood test shows elevated levels of ‘M protein,’” said Alexander. “That’s why it’s always important to have an annual physical and blood screening if you suspect you have symptoms of the disease, which can aid in the early diagnosis of diseases like myeloma.”
Multiple myeloma is the most common blood cancer among African Americans, with approximately 18,000 African Americans suffering from it in 2012, and the number of newly diagnosed cases are on the rise.
The good news is that African Americans are genetically predisposed to a less aggressive form of the disease and are likelier to have a more positive prognosis. The bad news is that as the population that suffers the most from it, African Americans often face barriers to receiving adequate care and gaining access to the most innovative treatments.
One of the most effective ways for researchers to learn more about multiple myeloma is through clinical trials, which allow them to evaluate and address the differences across diverse populations. Unfortunately, African Americans are underrepresented in clinical trials, comprising only 8 percent of enrolled patients in clinical trials.
The biopharmaceutical company Celgene noticed this disparity in diagnoses and treatment between the African American and other populations and decided to help. The company created a campaign called “Standing in the Gaap,” with the goal of spreading awareness about the disease and treatment options. To maintain neutrality, the initiative does not recommend specific treatments or provide treatment advice; it is primarily an educational campaign ultimately aimed at increasing access to and improving the quality of care.
Focusing on African American families and individuals as well as physicians, Standing in the Gaap emphasizes early diagnosis and treatment, including participation in clinical trials.
“Multiple myeloma is often thought of as a disease impacting older individuals, particularly older white males,” said Mohamad Hussein, M.D., corporate vice president of Scientific Collaborations at Celgene and myeloma expert. “But if you look at the data, African Americans are twice as likely to be diagnosed with the disease. Moreover, as these patients often have a better prognosis, it is critical that they work with their doctors and get the right care.”
Celgene’s Standing in the Gaap website contains helpful resources such as facts about multiple myeloma and information about clinical trials along with a link to the Multiple Myeloma Research Foundation Clinical Trials Finder. Additionally, a detailed online brochure provides information about symptoms; suggested questions to ask healthcare providers about diagnosis, testing and treatment; and a listing of foundation websites, such as the International Myeloma Foundation and the Leukemia & Lymphoma Society, with further information about the disease.
In addition, Celgene has linked up with other organizations such as Cancer Hope Network and The Leukemia & Lymphoma Society to provide information about myeloma and resources on the Myeloma Central website. From emotional support volunteers to educational materials, the website provides a wealth of assistance.
With the success of Standing in the Gaap, the hope is that fewer people will experience the pain that Kimberly Alexander has suffered in losing her husband. By educating one person at a time, the initiative has the potential to save numerous lives.
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