Last week, the Physicians Neurodegenerative Disease Working Group published a paper discussing the challenges patients may face accessing treatments for neurodegenerative diseases. As new symptomatic therapies reach market and potential disease-modifying therapies advance in development, patients and their physicians are understandably concerned about barriers to accessing these breakthroughs. The article details health insurance trends and coverage policies that create challenges and explores how changes in public policy may address them.
The recently established Physicians Neurodegenerative Disease Working Group is sponsored by the Alliance for Patient Access, a national network of doctors dedicated to ensuring patient access to approved therapies and appropriate clinical care. The group aims to inform policymakers about issues impacting access to medical therapies, such as high out-of-pocket costs and insurance restrictions, by developing educational resources and participating in advocacy initiatives. Rachel Dolhun, MD, vice president of medical communications at The Michael J. Fox Foundation, is a member of the group.
The paper acknowledges the "slow, expensive process" to develop new treatments for neurodegenerative diseases, increasing the chance these therapies will be high-priced when they reach the market.
"In an effort to control their costs, health plans may implement strategies to limit the number of patients who can access these treatments or pass costs on to patients."
Health plans can also limit patient access to doctors, specialists and health care facilities. "As a result, seeing a geriatric psychiatrist, movement disorders specialist, or other specialist may require long waits and excessive travel..."
The working group encourages state lawmakers to make policy changes to address these problems.
"State legislatures must continue to address current barriers to patient access, such as prior authorization, "fail first," non-medical switching, and high cost-sharing, all of which can impede access to treatment for patients with neurodegenerative diseases. Re-examining the impact of restrictions on Medicare Part D patients, such as the inability to use co-pay coupons to reduce prescription drugs costs, could also be helpful. Additionally, engaging with health plan directors and Medicare and Medicaid officials can shape policies that protect patients' access to care and treatment."
Patients, care partners and physicians work together closely throughout the course of a disease, and many patients view their doctor as a trusted advisor. The working group encourages physicians to advocate on behalf of people with neurological diseases to improve quality of life.
"The experiences and insights...of physicians must now inform policy and public dialogue on access issues so that patients can receive the care and treatments they need."
Learn more about MJFF's public policy work to support patient access to care and improve well-being for people living with Parkinson's disease.