JOHNS HOPKINS BERMAN INSTITUTE OF BIOETHICS
Media Contact: Leah Ramsay, lramsay@jhu.edu, 202.642.9640

November 25, 2014
FOR IMMEDIATE RELEASE

Sickle Cell Disease Patient/Researcher Named to Ebony Magazine Power 100 List

carlton_haywood_jrBioethics scholar Carlton Haywood Jr., PhD, MA, has been recognized by Ebony Magazine on its Power 100 list, an annual celebration of the most influential and inspiring men and women in the African American community.

As a faculty member at Johns Hopkins University, Dr. Haywood conducts research in areas where he has a unique confluence of expertise, putting his doctorate in bioethics and health policy to work on issues related to sickle cell disease (SCD), from which he also suffers.   In addition to conducting original research that bolsters data on the effects of discrimination in the American healthcare system, Dr. Haywood uses his personal experience to conduct outreach and raise general public awareness of SCD.

“When speaking with healthcare professionals, policy-makers, and even the general public, my position as a researcher gives me opportunities to provide the patient perspective that otherwise might not have been represented,” Dr. Haywood says. “Ultimately, I try as best I can to combine the voices of patients with rigorous research methods to help facilitate the development of research, treatments, and policies that properly reflect the actual needs and experiences of the patient populations they are intended to serve.”

Through his research and outreach as a faculty member at the Berman Institute of Bioethics, the Division of Hematology, and the Welch Center at Johns Hopkins, Dr. Haywood seeks to explore, call attention to, and begin to resolve the issues that inhibit effective SCD care and research — to help those suffering from SCD now, and in the future. He is lead author on a recent study in the Journal of General Internal Medicine (JGIM), published by Springer, which is among the first to quantitatively examine SCD patient non-adherence to physician recommendations, and experiences of discrimination as the cause. The results show that adult SCD patients who report experiences of discrimination in the healthcare system were 53% more likely to also report not following physician recommendations.

In 2013 the Baltimore Sun ran a front-page profile of Dr. Haywood, with accompanying video showing him receiving one of the monthly blood transfusions he receives to help manage SCD. He says he hopes the coverage provides the general public with a small window into the challenges many persons with SCD experience as they try to cope with their disease while still living a functional day-to-day life.

Recently, Dr. Haywood has also done media outreach through The New York Times, Washington Post, Nature, and WHYY’s The Pulse, as well as other outreach including delivery of the keynote lecture at the 2nd National Canadian Conference on SCD, serving on an expert SCD panel for a congressional briefing on Capitol Hill in Washington, DC, and contributing to a curriculum that guides healthcare workers in integrating pediatric palliative care principles into SCD treatment.

SCD is the most common genetic condition detected by newborn screening in the United States, affecting an estimated 100,000 individuals nationwide; over 90% of those affected are of African descent. The genetic mutation causes red blood cells to become misshapen (“sickle” shaped rather than round) and thus clump together, blocking blood flow. The hallmark symptom of the disease is recurring episodes of extreme pain, which at their most intense are called pain “crises,” which only the most powerful opioids can alleviate. Other effects can be devastating and include increased susceptibility to infection, strokes, chronic pain, progressive end-organ damage, and early mortality.

Symptoms begin in childhood, and from that time through the rest of their lives persons with SCD can accumulate hundreds of encounters with medical professionals by way of emergency department visits or inpatient hospital stays, Haywood explains. Many clinicians lack sufficient education and experience with SCD and its treatment, and unfortunately often doubt the authenticity of the patient’s report of pain, or they suspect the patients are seeking painkillers due to addiction. Race cannot be discounted as a factor, Dr. Haywood says.

“Clinicians have historically been hesitant about prescribing some of these powerful opioid analgesics out of fear patients will become addicted, and there has also been difficulty in assessing and treating patients with pain,” Dr. Haywood says. “Combined with issues of race and class resulting from this country’s history of social relations, these factors make the situation for persons with SCD seeking pain relief even more complicated. In addition to research into new treatments for sickle cell disease, it is crucial to develop methods for improving trust and the quality of interpersonal relationships between patients and healthcare professionals.”

Dr. Haywood and other researchers and advocates in the SCD community are making some progress. JAMA, the Journal of the American Medical Association, recently published new recommendations developed by the NIH for managing SCD, including a strong instruction to physicians to take patients at their word and begin “rapid initiation of opioids for treatment of severe pain”.

“There are complex factors that inhibit effective management of sickle cell disease,” Dr. Haywood says. “Studying the root causes of these issues and working to resolve them will help to make the best use of the tools we do have available to us to relieve suffering and save lives in this population.”

 

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