What does the ‘Cures Act’ mean for people with Parkinson’s?


On December 13, President Barack Obama signed the 21st Century Cures Act into US law. Days earlier the Senate had approved the Act with a 94-5 vote, after Parkinson’s campaigners had put pressure on US policymakers to advocate for a national neurological disease data collection system.

The result is the creation of the ‘National Neurological Conditions Surveillance System’ at the Centers for Disease Control and Prevention. This programme will collect demographic information about people living with neurological diseases such as Parkinson’s, to more accurately profile who is living with these conditions.

Allyse Falce, Research Communications Officer of the Michael J Fox Foundation, said: “The database will provide a foundation for understanding many factors, such as clusters of diagnoses in certain geographic regions, variances in the number of men and women diagnosed with neurological diseases, and differences in health care practices among patients.”

The Cures Act also requires the Food and Drugs Administration (FDA) to consider patient perspectives in the drug approval process and start collecting data on patient experience of living with a disease.

Falce said: “Involving patients in this manner will put government regulators in touch with the community’s experiences and priorities as new drugs and devices enter late-stage clinical testing and move toward FDA approval.”

The Bill also puts in place an accelerated review process for breakthrough medical devices that could benefit patients with debilitating chronic conditions.

The 21st Century Cures Act will allocate:

  • $1.5 billion over 10 years to the National Institutes of Health (NIH) for the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative, which supports specialist development of unique technologies to help researchers improve understanding and treatments for conditions such as Parkinson’s and Alzheimer’s
  • $1.5 billion over 10 years to the NIH for the Precision Medicine Initiative, which aims to develop tailored prevention strategies and treatments to each unique individual’s condition. This could be beneficial for people with Parkinson’s whose symptoms vary from person to person.
  • $500 million to the Food and Drug Administration to improve access to care, consider patient perspectives in the drug approval process and start collecting data on patient experience of living with a disease.
  • $30 million for clinical research to further the field of regenerative medicine using adult stem cells. Stem cell research in the field of Parkinson’s could lead not only to symptomatic therapies but also a deeper understanding of the disease.

For more information on the Cures Act, click here