I think it is safe to say that many of our members who treat patients are aware of the high cost of many of the neurologic drugs in the United States. We understand that these costs-even with insurance-can have a severe economic impact on our patients and certainly drive up the expense of health care in this country. Many of us have heard our patients and their families express dire concerns about whether they could continue to take an effective medication that is controlling their condition and helping them maintain a high quality of life. Other patients do not take medicines as prescribed because of the high cost of a prescription. This is particularly true for patients with chronic neurological conditions that often require life-long therapy.  

Your Academy has been aware of this, too. Earlier this year, the AAN approved a position statement on Prescription Drug Prices. As the document points out, many therapies for neurologic disease are among the most expensive in the US.

Neurologists also are limited by few, if any, therapies available in a particular class of medications. For example, the recently approved therapies for Duchenne muscular dystrophy and spinal muscular atrophy are expected to cost $300,000 and $750,000 in the first year of treatment, respectively. These medications likely will require many years of therapy starting at a very young age. There are very few families who can afford such drugs. Additionally, some drugs that have even been approved for many years, are available as generics, or have multiple options available have greatly increased in price. Setting aside the financial enormity of such a burden, stratospheric price tags for these and other medications can be emotionally devastating to patients and family caregivers just as they need to have a laser-beam focus on treating the physical aspects of their disorder. Then, add insult to injury when patients learn that their medications-if available in Canada or overseas-may be considerably less expensive and they are unable to access this cheaper cost.

A couple decades ago in Washington, politicians aligned with the pharmaceutical industry ensured that the federal government would be unable to negotiate drug pricing under Medicare's Part D coverage. Rather than being able to bring the weight of its purchasing power to bear on these unchecked prices, Medicare, the country's largest single-payer health care system, has seen its costs balloon to unsustainable levels. The Centers for Medicare & Medicaid Services has projected that drug costs in the US will rise to $406 billion at the end of this decade from $272 billion in 2013, driven in part by higher priced “specialty” drugs.

In Congress, the AAN has advocated for several pieces of legislation that are consistent with our position, including the Improving Access to Affordable Prescription Drugs Act introduced by Minnesota Sen. Al Franken to address the main areas of concern outlined in the AAN's position statement: price negotiation, transparency, and importation. We also have been working with the National MS Society on their transparency goals regarding drug pricing. But we must do more for our patients and our profession to address the ongoing issue of high drug costs.

This summer, I appointed a new Neurology Drug Pricing Task Force, led by Nicholas E. Johnson, MD, our able chair of the AAN Government Relations Committee. Its charge is to study the environment of drugs for neurologic disease and propose ways for the AAN to proactively address the challenges associated with ultra-high drug costs, including implications at the governmental, institutional, physician, and patient levels. Evaluation of other professional and patient-advocacy organization positions and opportunities for collaborations with other organizations will also be considered. We must work with our partners and address this major problem together.

The task force held the first of its bimonthly conference calls in July, and will produce recommendations to the AAN Board of Directors in the coming months. We will communicate the results of their work to you, and we will call on you through email AAN Action Alerts to support legislation that accomplishes the goals outlined by the Academy in our Prescription Drug Prices position statement. Stay tuned and thanks for your continued efforts to promote the highest quality patient-centered neurologic care.