Michael Toscani, PharmD
Senior fellow, Jefferson School of Population Health, Philadelphia
Marc Riedl, MD, MS
Assistant professor of medicine and section head of clinical immunology and allergy, David Geffen School of Medicine, University of California-Los Angeles
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Purpose: Because little is known about the burden of illness associated with hereditary angioedema (HAE), this article reviews the challenges in identifying and managing this rare disease and its humanistic and economic burdens.

Design: We identified studies examining the burdens associated with HAE. Conducting larger studies using claims analyses for HAE is particularly challenging, owing to the rarity of the disease in health plans and to diagnostic/coding challenges. Because the data have been limited, larger surveys of patients have been conducted. They are explored here.

Methodology: We searched for studies addressing attack characterization, acute treatment, chronic disease management, adverse events, psychosocial burden, effect on work, and patient costs.

Principal findings: HAE may result in physical and/or psychological disability because of the lack of effective treatments and the unpredictability of symptom severity. The reported average annual total costs per patient are approximately $42,000, ranging from approximately $14,000 for mild cases to approximately $96,000 for severe disease. It is not known how much of this is paid by the patients, although it can be assumed that it is substantial for some.

Conclusion: The appropriate use of disease-specific treatments for HAE may improve patients’ quality of life and reduce HAE-associated morbidity and mortality while also reducing costs associated with hospitalizations and other interventions. Future cost-effectiveness studies are needed to examine these issues. Disease-specific agents are expected to significantly change the HAE treatment paradigm in the United States and dramatically improve the efficacy of medical care for these patients.

Key words: hereditary angioedema, humanistic burden, economic burden

Managed Care’s Top Ten Articles of 2016

There’s a lot more going on in health care than mergers (Aetna-Humana, Anthem-Cigna) creating huge players. Hundreds of insurers operate in 50 different states. Self-insured employers, ACA public exchanges, Medicare Advantage, and Medicaid managed care plans crowd an increasingly complex market.

Major health care players are determined to make health information exchanges (HIEs) work. The push toward value-based payment alone almost guarantees that HIEs will be tweaked, poked, prodded, and overhauled until they deliver on their promise. The goal: straight talk from and among tech systems.

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The surge of new MS treatments have been for the relapsing-remitting form of the disease. There’s hope for sufferers of a different form of MS. By homing in on CD20-positive B cells, ocrelizumab is able to knock them out and other aberrant B cells circulating in the bloodstream.

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Having the data is one thing. Knowing how to use it is another. Applying its computational power to the data, a company called RowdMap puts providers into high-, medium-, and low-value buckets compared with peers in their markets, using specific benchmarks to show why outliers differ from the norm.
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Shelley Slade
Vogel, Slade & Goldstein

Hub programs have emerged as a profitable new line of business in the sales and distribution side of the pharmaceutical industry that has got more than its fair share of wheeling and dealing. But they spell trouble if they spark collusion, threaten patients, or waste federal dollars.

More companies are self-insuring—and it’s not just large employers that are striking out on their own. The percentage of employers who fully self-insure increased by 44% in 1999 to 63% in 2015. Self-insurance may give employers more control over benefit packages, and stop-loss protects them against uncapped liability.