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Systemic Lupus Erythematosus (SLE) Patients Struggle to Receive an Accurate Diagnosis in a Timely Manner and Their Symptoms Are Sometimes Not Taken Seriously by Physicians, According to a Recent BioTrends Report

BioTrends Research Group
Posted on: 10 Jul 12

BioTrends Research Group, one of the world’s leading research and advisory firms for specialized biopharmaceutical issues, finds that over one-third of lupus patients think many of the doctors/healthcare providers they consulted were not well-educated on how to diagnose and treat lupus and 31 percent think it took too long to diagnose their condition. In addition, there are significant differences in the doctor-patient interaction in comparison to patients with rheumatoid arthritis, who are also treated by rheumatologists. Two-thirds of lupus patients reported their doctor did not automatically connect their symptoms with lupus, half of patients reported at least one experience where their physician did not take their lupus symptoms seriously and half were initially diagnosed with a different condition. However, more than two-thirds feel that their physician is empathetic about their disease. The findings come from the recent, PatientTrends®: Lupus in which approximately 250 online patient surveys were analyzed.

Virtually all lupus patients reported at least one other co-morbidity in addition to lupus. Sixty-nine percent stated that SLE is the most concerning ailment they have which may be why many patients regularly seek information about the condition and more than half of them consider themselves to be knowledgeable about their disease. Interestingly, 59 percent of patients in the study were not aware of Human Genome Sciences/GlaxoSmithKline’s Benlysta, the first agent approved for lupus in the past 50 years. Among patients who are aware of Benlysta and have discussed it with their doctor, nearly half say they have not started on Benlysta because the physician is reserving it for a possible future option. These patient-reported findings are corroborated in BioTrends’ LaunchTrends®: BENLYSTA report as well, where rheumatologists indicated they describe the target Benlysta patient as refractory or having failed prior standard of care treatment, with active, moderate-to-severe SLE and in need of steroid reduction.

Despite their interest to learn and be knowledgeable about their condition and drug treatments, very few lupus patients, 11 percent, request specific drugs from their physicians. However, when they do, it is typically prescribed for them. According to patients in the study, compliance in this category is high with most patients stating they get their prescriptions filled for their lupus medications. Ninety-six percent of patients taking hydroxychloroquine (Sanofi’s Plaquenil, generics), the drug used most often to treat lupus, reported they have never not filled a prescription for hydroxychloroquine.

Now that Benlysta has been on the market for over one year, BioTrends has more information on physicians’ perceptions and usage of the product. Rheumatologists continue to view the main benefit for Benlysta as its novel mechanism of action, while its main disadvantages continue to center around cost (patients’ out-of-pocket expense), its intravenous route of administration, its limited indications and its lack of proven/modest efficacy. Since Wave 2 (three months post-launch), Benlysta continues to be most associated with two of the most important attributes for prescribing: improvement in quality of life and decreased use of steroids. These findings are just the tip of the iceberg in BioTrends’ LaunchTrends: BENLYSTA report.

PatientTrends: Lupus U.S. is an annual, quantitative publication based on online patient surveys with approximately 250 patients in May 2012 in the United States. All patients have been diagnosed with SLE by a physician. A subset of 15 of the respondents participated in qualitative interviews in June 2012. The objectives of this study are to analyze the lupus patient’s journey to diagnosis, evaluate their behavior and approach to health, examine their perspectives regarding lupus and lupus treatment and assess their awareness and willingness to try new treatment options such as Benlysta, and products in the pipeline.

LaunchTrends: Benlysta is a series of four post-launch syndicated reports designed to track the uptake of Benlysta at one month, three months, six months and 12 months following its commercial availability. In the latest wave of research, which measures Benlysta’s market impact at twelve months post launch, BioTrends surveyed 101 rheumatologists and conducted qualitative interviews with a subset of 15 of the respondents in April 2012. This is the final report of this series. However, BioTrends will continue to track the usage of Benlysta in the ongoing TreatmentTrends®: Lupus U.S., TreatmentTrends: Lupus EU and ChartTrends®: Lupus U.S. report series.

About BioTrends Research Group

BioTrends Research Group provides syndicated and custom market research to pharmaceutical manufacturers competing in clinically evolving, specialty pharmaceutical markets. For information on BioTrends publications and research capabilities, please contact us at (610) 321-9400 or BioTrends is a Decision Resources Group company.

About Decision Resources Group

Decision Resources Group is a cohesive portfolio of companies that offers best-in-class, high-value information and insights on important sectors of the healthcare industry. Clients rely on this analysis and data to make informed decisions. Please visit Decision Resources Group at

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Last updated on: 10/07/2012

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