Sickle Cell Vascular Disease Section, Cardiovascular Pulmonary Branch, National Heart, Lung and Blood Institute, Nationa

1. Sickle Cell Vascular Disease Section, Cardiovascular Pulmonary Branch, National Heart, Lung and Blood Institute, National Institutes of Health EXAMINING PREVALENCE OF TOBACCO, ALCOHOL, ILLICIT DRUG USE IN ADULTS WITH SICKLE CELL ANEMIA Catherine A. Seamon, Darlene T. Allen, James G. Taylor VI, Jonathan Wilson, Gregory J. Kato

2. Disclosures • No conflicts of interest to disclose. • Funded by the NIH Division of Intramural Research.

3. Objectives • Determine prevalence of tobacco, alcohol, and illicit drug use in sickle cell anemia. • Discuss impact of “drug seeker” or “addict” labels on the management of acute pain crises.

4. Background Leading barrierto effective pain management is negative provider perceptions • Avoidance of emergency rooms • Delayed administration of analgesics • Mistrust • Ineffective medical care Haywood, C., et al. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc. 2009; 101(10): 1022-1033

5. “When you see us, across an examination table, hospital bed or ER gurney it is but a microcosm of our quotidian trials. You may be skilled in healing but we are expert in surviving… We have and still do hope, no pray for the cure that will deliver us from this incessant suffering, the tortuous pain that pits us against implacable providers of relief who dole out miniscule amounts of analgesic. We want to have a say in what is written about us. We want to call ourselves by our names and define our situational crises as we see fit. We want to critique our critics and allies before misleading comments are committed to paper in medical annals, forever shaping the version of who we are and what we do…” Quote taken with permission of author from the Sickle Cell Disease Care and Research: Past, Present, and Future, Panel presentation at the James B. Herrick Symposium (Nov 16, 2010)

6. National Institutes of Health • SCD Evaluation Study: • Pulmonary Hypertension, etc. • To identify genetic modifiers of sickle cell disease complications and severity • Age ≥ 18 • Compensation • Subject Interviews

7. National Survey on Drug Use and Health, 2009 • Survey of civilian, non-institutionalized population • Evenly divided among states and age categories: 12-17, 18-25, and 26 years or older • Compensation • Computer assisted surveys Substance Abuse and Mental Health Services Administration. Results from the 2009national survey on drug use and health: Volume I. summary of national findings. Rockville, MD: Office of Applied Studies; 2010. NSDUH Series H-38A, HHS Publication No. SMA 10-4586Findings.

8. Population Demographics

9. Self-Reported Results *Participants were classified as current users, if they had used a substance within the year prior to evaluation

10. Limitations • Age-matched population comparisons (NSDUH) not performed • Ascertainment Methods Differed • Interviews versus computer assisted survey

11. Implications • Drug abuse stigma could lead to ineffective pain treatment. • A change in provider perception has the potential to positively impact trust in providers. • Future area for study

12. Acknowledgements Thank you! Patients Sickle Cell Vascular Disease Section Clinic Nurses Clinical Research Nurses

13. Contacts Cassie Seamon, RN Clinical Research Nurse cseamon@nhlbi.nih.gov 301-451-6361 Darlene T. Allen, MT (ASCP) Study Coordinator darlenea@nhlbi.nih.gov 301-435-1495 James G. Taylor, VI Assistant Clinical Investigator Genomic Medicine Section jamesta@nhlbi.nih.gov 301-435-7895