AfPA’s Neurological Disease Working Group seeks to ensure that policymakers hear the perspectives of clinicians who treat patients with neurological conditions such as movement disorders, dementia, Multiple Sclerosis, and epilepsy. Working group members collaborate on educational resources and advocacy initiatives that promote informed policy making on issues impacting access to medical therapies.
Neurodegenerative & Neurological Conditions
Progressive and debilitating, neurodegenerative disorders impact millions of Americans. People with Parkinson’s struggle with a host of symptoms affecting movement and cognition. Those with Alzheimer’s experience memory loss but also suffer more generalized cognitive decline, and those with Huntington’s disease struggle with uncontrollable movements and writhing. As these disabling conditions progress, they are often complicated by the emergence of additional symptoms. Psychiatric disturbances such as anxiety and depression are common to the advanced stages of all three conditions. Psychosis, often characterized by delusions or hallucinations, can further complicate these conditions.
Beyond neurodegenerative conditions, physician working group members also treat autoimmune disorders that affect the nervous system, such as multiple sclerosis. Patients with MS can struggle with numbness of the appendages, impaired vision and communication, and movement challenges. Working group members also treat patients to manage epilepsy and other seizure disorders.
Treatment Options & Barriers
Though no cures exist, medical therapies can improve quality of life for patients. Research and development continues in the search for therapies that can modify, even cure, these neurological conditions. The Food and Drug Administration sometimes provides such therapies priority review, fast tracking their availability to patients with few treatment options.
Health plan designs, however, do not always facilitate patients’ access to breakthrough therapies. High out-of-pocket costs and onerous prior authorization processes, as well as fail first protocols, limit patient access to newly available therapies. Given the millions of Americans affected by neurological disorders and the high costs associated with breakthrough therapies, education and informed policy making are essential to ensure appropriate patient access.
White Papers and Policy Briefs
- Botulinum Neurotoxins and Non-Medical Switching
Institute for Patient Access, December 2018
- Co-pay Accumulator Programs: What Can Policymakers do to Protect Patients?
Institute for Patient Access, August 2018
- Co-pay Accumulator Adjustment Programs
Institute for Patient Access, June 2018
- Veterans’ Access to Migraine and Headache Disorders Treatment
A Policy Panel Discussion from the Headache and Migraine Policy Forum, March 2018
- Movement Disorders: Impact and Access to Treatment
A white paper from the Movement Disorders Policy Coalition, October 2017
- Protecting Patient Access to Treatments for Neurodegenerative Diseases
A White Paper from the Physicians Neurodegenerative Disease Working Group, October 2016
- Medication for Long-Term Care Residents: Reducing Overuse Without Compromising Access and Care
A Health Policy Brief from the Institute for Patient Access, January 2016
Other Policy Resources
- BLOG: ICER vs. Infants
- BLOG: New Medicare Cost-Cutting Proposal Would Hurt Older Adults but Recognizing Pharmacists Would Help
- BLOG: New IfPA Policy Paper Warns about Non-Medical Switching of Botulinum Neurotoxins
- BLOG: It’s Time to Supercharge Caregiving
- BLOG: “Well Beyond Blue” Meeting Allows Patients to Voice Perspective
- Infographic: Non-Medical Switching of Neurotoxins
- #CureStigma This Mental Illness Awareness Week
- BLOG: FDA Hearing Explores Competition & Innovation in Biosimilars
- BLOG: Summer 2018: A Health Policy Recap in 10 Quotes
- BLOG: Will Reforming Medicare Billing Rules Benefit Patients?
- BLOG: New Treatments will Target Parkinson’s Patients’ “Off” Periods
- Infographic: Why Medication Access Matters to Parkinson’s Patients
- BLOG: How Policymakers Can Stop Patients’ Co-pay Surprise
- Infographic: The Connection Between Tardive Dyskinesia & Mental Health
- Video: The Co-Pay Surprise
- Infographic: The Ugly Co-Pay Surprise
- BLOG: Parkinson’s Patients Face Treatment Delays
- Infographic: What Puts Patients’ Epilepsy Medication Out of Reach
- BLOG: Epilepsy Day Highlights Access Challenges for Patients
- BLOG: Putting a Price on Migraine Prevention
- Video: Who Are Headache Disorders & Migraine Hurting?
- BLOG: The Mental Illness Problem Hidden in Plain Sight
- Infographic: When MS Patients are Forced to Take Cheaper Medications…Everybody Pays
- Infographic: What Keeps Patients’ Multiple Sclerosis Medications Out of Reach?
- BLOG: Access Barriers Loom for Movement Disorder Patients
- BLOG: Awareness Month Highlights Migraine’s Impact, Lack of Treatments
- Infographic: Who is Migraine Hurting?
- Infographic: The Societal Burden of Migraine
- BLOG: Massachusetts Pursues Better Access, Less Failure for Epilepsy Patients
- BLOG: Can the Gas Company’s Model Help Seniors Manage Rx Co-Pays?
- Infographic: Why Alzheimers and Parkinson’s Patients Need Clinical Trials Awareness
- The Epilepsy Foundation urges Congress to restore funding for critical public health epilepsy programs
- Economic Burden of Multiple Sclerosis and the Role of Managed Care Organizations in Multiple Sclerosis Management
- Infographic: A Cure for Alzheimer’s: We’re up to the challenge
Worldwide Clinical Trials
- ALS Association Advocacy Center
- Alzheimer’s Association Advocacy Center
- American Academy of Neurology Public Policy
- Huntington’s Disease Society of America Resource Center
- The Michael J. Fox Foundation
- What’s in the Parkinson’s Medications Pipeline?
Parkinson’s Disease Foundation
- From Hope to Cures
In the News
- Do prescription drug middlemen keep prices high?
PBS News Hour, August 11, 2018
- Family can sue Walgreens over woman’s death after insurance denial, court says
CNN, June 8, 2018
- Her daughter’s epilepsy was controlled by a drug, but then their insurer stopped covering it: ‘It’s devastating.’
Chicago Tribune, March 14, 2018
- Survey: Let doctors decide patient’s medications
The Detroit News, October 7, 2017
- Epilepsy medication shouldn’t fall under the same scrutiny as opioids
Penn Live, August 24, 2017
- Insurers Battle Families Over Costly Drug for Fatal Disease
The New York Times, June 23, 2017
- Don’t impose barriers to non-opioid epilepsy drugs
The Intelligencer, April 28, 2017
- Should insurance companies require patients to “fail first” on wrong drugs?
Star Telegram, March 20, 2017
- Commentary: Insurers make troubling decisions on new treatments
The Inquirer, February 8, 2017
- Biotech Researchers Eye Alzheimer’s Breakthroughs Years after President Reagan’s Courageous “Sunset”
Biotech Now, November 8, 2016
- 3 Reasons I have Hope for Parkinson’s Disease
LinkedIn Pulse blog, September 13, 2016
- In war on Alzheimer’s, R.I.’s Butler Hospital is leading the charge
Providence Journal, August 27, 2016
- BLOG: What Cancer Drugs Might Mean for Alzheimer’s and Parkinson’s Patients
Institute for Patient Access, July 22, 2016
- U.S. Approval of Nuplazid: Exploring Physicians’ Take
DRG Blog, May 13, 2016
- MIT scientists find evidence that Alzheimer’s ‘lost memories’ may one day be recoverable
Washington Post, March 17, 2016
- BLOG: New Clues, Same Access Challenges for Alzheimer’s Patients
Institute for Patient Access, October 29, 2015
- Why Neurologists and Their Patients Must Be Informed When Pharmacists Switch Biologics
by David Charles, MD, FAAN, Neurology Today, April 3, 2014
For more information about this physicians’ working group, click here.