by Amanda Conschafter, Blog Editor
Patients with rare diseases still struggle to access the medicine they need, despite growing disease awareness and passage of the Affordable Care Act. Panelists at Wednesday’s Rare Disease Congressional Caucus briefing, “Access to Care and Therapies in the New Healthcare System: A Rare Disease Perspective” described patients’ unique challenges – and new legislation aimed to improve access. Panelists depicted a health care environment complicated by specialty tiers and other utilization management techniques that can keep life-saving medication out of reach for patients with rare diseases.
One panelist, Avalere Health’s Lauren Barnes, broke rare disease patients’ challenges into six broad categories: affordable premiums, narrowing provider networks, formulary breadth, utilization management, higher cost sharing and co-payment assistance. Combined, these challenges present rare disease patients with fewer options and higher costs – a concept echoed by other panelists throughout the event.
Cost utilization in the form of specialty tiers proves especially problematic. The practice, which puts a higher cost burden on patients for expensive medications that are less commonly prescribed, affects rare disease patients in particular. For many, the higher co-insurance costs associated with specialty tier medications makes treatment simply unaffordable. Further complicating matters, Avalere’s research reveals that the use of specialty tiers in health insurance exchanges resembles Medicare practices more than the private market insurance model. (A 2009 Kaiser Foundation study found that 87 percent of standalone Medicare Part D plans and 98 percent of Medicare Advantage prescription drug plans used specialty tiers.)
As an aide from Representative David McKinley’s (R-WV) office explained, some exchange plans simply don’t cover certain specialty drugs at all. For those who suffer from rare diseases – such as panelist and U.S. Representative Tom Marino’s (R-PA) daughter, who suffers from Cystic Fibrosis, and Lisa Lusk, a Chronic Myelogenous Leukemia patient and panelist from the Leukemia & Lymphoma Society – failure to access needed medications can be detrimental, even fatal.
Legislation before Congress seeks to improve access by eliminating specialty tiers. H.R. 460, the Patients’ Access to Treatment Act, would reduce patients’ cost burden by requiring specialty drugs to be covered under lower tiers, likely making life-saving medications available to a broader range of patients. At its foundation, the bill is designed to “keep people healthy,” Congressman McKinley’s aide explained, and “get people the care they need.”