September is sickle cell disease awareness month, and faculty members of the Johns Hopkins Berman Institute of Bioethics are taking an active role in increasing understanding of this debilitating disease and the ethical dimensions of its treatment and impact.
Bioethicist Carlton Haywood Jr., PhD, MA, a sickle cell disease patient, researcher and advocate, will moderate the Lonzie Lee Jones Patient Advocacy Symposium Thursday, September 27, part of the 40th annual convention of the Sickle Cell Disease Association of America. The convention will be held September 25 – 29, 2012 at the Marriott Waterfront Hotel in Baltimore, MD.
Joann Rodgers, MS, also a faculty member at the Berman Institute, will be a panelist at the Symposium, discussing strategies to increase the public understanding of sickle cell disease (SCD) from her 25 years of experience at the helm of the public affairs office of Johns Hopkins Medicine. Haywood will give a separate address at the convention on Friday, September 28, titled "Your Voice Can Change the World! (From Personal to Legislative Perspectives)."
The most commonly known symptoms of SCD, a genetic disorder, are chronic and acute pain attacks, called "pain crises," that occur when misshaped red blood cells become stuck in blood vessels, depriving tissues throughout the body of oxygen. Powerful narcotic pain medicines such as morphine and Dilaudid are used to treat the intense and sudden episodes, but studies show that emergency room and other physicians are sometimes reluctant to prescribe them because of their fear of patient addiction.
Adding to a physicans' wariness is that some with SCD are in and out of the hospital frequently, asking for specific narcotics or specific doses of narcotics to treat pain that by its nature cannot be objectively assessed. Then, as Haywood points out, there's the reality that most people in the U.S. with the disease are African-American, and that many are of lower socioeconomic status. All of those factors can combine to inhibit trust building between the physician and the patient.
"I think both of those issues — race and class — interact with certain aspects of the culture of medicine," Haywood says. "The culture of medicine is such that, clinicians are already a little hesitant about prescribing some of these powerful opioid analgesics because they don't want patients to become addicted. I think that issues of race and class can make the situation even more complicated," he says.
Earlier in September, Haywood was a keynote speaker at the North Carolina Sickle Cell Syndrome and Thalassemia Partners Conference. In his lecture, titled, "Taking Control: Finding Your Voice with Sickle Cell Disease," he shared his experience both living with and researching the disease, and the reciprocal impact of one upon the other. "My research on issues of respect and trust in sickle cell disease is driven in large part by my experiences as an individual living with the disease who has felt the frustration of having my voice and my perspectives go unheeded by clinicians responsible for my care," Haywood says.
VIDEO: Haywood explains sickle cell disease and his experience living with it (via National Initiative for Children's Healthcare Quality) http://vimeo.com/49602847#embed
Carlton Haywood Jr. bio: http://www.bioethicsinstitute.org/mshome/?ID=111
About the Johns Hopkins Berman Institute of Bioethics:
One of the largest centers of its kind in the world, the Johns Hopkins Berman Institute of Bioethics is the home for collaborative scholarship and teaching on the ethics of clinical practice, public health and biomedical science at Johns Hopkins University. Since 1995, the Institute has worked with governmental agencies, nongovernmental organizations and private sector organizations to address and resolve ethical issues. Institute faculty members represent such disciplines as medicine, nursing, law, philosophy, public health and the social sciences. More information is available at www.bioethicsinstitute.org.
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