1. And Parkinson’s disease
Public policy
And Parkinson’s disease
Supporting the PD Community through Advocacy

2. What ARE Public policy and advocacy?
The laws that govern national, state and local decision-making on a
given topic.
They can take the form of bills, mandates, regulations and rulings.
Co-created by many different stakeholders: elected officials, federal
agencies, the courts.
Advocacy:
The difference between public policy and advocacy can be difficult to understand.
Public policy itself is not one tangible thing. It’s a collection of laws, mandates, regulations and rulings that govern decision-making on a given topic. It can be created in many different ways, including chief executives (like the president or state governors), federal agencies, legislatures (Congress at the federal level, as well as state lawmaking bodies), and the courts.
Advocacy is how you go about influencing public policy, through avenues such as education, lobbying or relationship building.
Activities that aim to influence policy through avenues such as
education, lobbying or relationship building.

3. Public policy and advocacy are key to meeting patients’ needs
Wide-ranging government policies and programs directly affect Parkinson’s disease (PD) research and care.
The National Institutes of Health (NIH) is the world’s largest public funder of
Parkinson’s research.
The Department of Defense Parkinson’s Research Program is the only federal government research program specifically dedicated to PD.
The Food and Drug Administration (FDA) regulates new Parkinson’s drugs and
medical devices to ensure they’re safe and effective.
Programs such as Medicare, Medicaid and Social Security can increase access to
health care and support services.
Public policy affects many aspects of life with Parkinson’s disease. Decisions made by state and local governments can have a direct impact on the scope of PD research and patients’ access to care.
[NOTE FOR PRESENTER]: The NIH is the world’s largest public funder of PD research, and MJFF is the world’s largest nonprofit funder of PD research.
The Food and Drug Administration (FDA) is the federal agency responsible for protecting public health through the regulation and supervision of a variety of areas, such as our nation's food supply, tobacco products, vaccines and medications. 
As a U.S. taxpayer you are funding these institutions and programs.

4. priority areas for Parkinson’s policy Work
Further Parkinson’s Disease Research
Support Therapy Development and Approvals
Safeguard Access to Care and Support Services
The PD community needs better treatment options to slow, stop or prevent the disease. This includes therapies that address the many symptoms of Parkinson’s disease, as well as a cure. We have made great progress in the field of PD drug development, but more work needs to be done.
We must advocate for policies, such as increased federal research funding, that will continue to move scientific progress forward. This will help us address treatment needs and will move us closer to a cure.
To get new treatments into patient hands, it’s critical that we collaborate with government regulators, like the FDA, so they understand Parkinson’s disease and the needs of patients. As new therapies make their way to the FDA for approval, regulators must understand how those therapies benefit patients. And we must work with insurers so these treatments are affordable and accessible when they reach pharmacy shelves.
As we make progress toward new treatments and a cure, we need to support people living with Parkinson’s today. We must work with the departments and agencies that regulate Medicare, government benefits and other resources that can improve quality of life now.

5. Further Parkinson’s disease research
STRENGTHEN funding at the National Institutes of
Health to advance scientific breakthroughs.
EDUCATE policymakers on the importance of pushing innovation forward through bills such as the
21st Century Cures Act.
SUPPORT the Department of Defense Parkinson’s
Research Program to better understand environmental
triggers of PD.
These are a few examples of work to further PD research. Feel free to add examples of your own personal work in this area.
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation's medical research agency and the largest public funder of PD research, supporting an estimated $169 million in Parkinson's research in Fiscal Year NIH research offers great promise for finding better treatments and a cure.
In December 2016, the 21st Century Cures Act was signed into law. This bill creates the National Neurological Conditions Surveillance System (database) at the Centers for Disease Control and Prevention (CDC) to collect demographic information on people living with neurological diseases. We do not currently have accurate information about how many people are living with Parkinson's disease, where they are located or who they are (their gender, ethnicity, etc.). Lack of this core data slows research and makes it difficult to ensure health care services are properly allocated. 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. In late 2018, Congress provided the money needed to implement the database, and the CDC announced Parkinson’s would be one of the first diseases included in the database.
The Department of Defense (DoD) Parkinson’s Research Program addresses fundamental gaps in our understanding of how Parkinson’s develops. It is the only government-funded research program specifically dedicated to Parkinson’s disease. Troops are routinely exposed to a wide range of toxins and events, such as head trauma, that may lead to the onset of Parkinson's disease. Understanding how these exposures occur, if and when people develop the disease afterwards, and how these conditions may be prevented, treated or cured will allow the DoD to better protect military personnel while they serve our country. In the past, bills have been introduced that threatened funding for this program. The PD community has played an active role in protecting this program and educating lawmakers on its importance.

6. Support therapy development and approvals
AMPLIFY the patient voice so drug developers
understand priorities and areas of unmet need.
COLLABORATE with the FDA to develop regulatory pathways and include patient perspectives in the therapy approval process.
ENSURE patient needs are taken into account in
drug pricing.
These are a few examples of work to support therapy development and approvals. Feel free to add examples of your own personal work in this area.
Therapy developers, government regulators and insurers may not be aware of the unmet needs of people living with Parkinson’s. There are still holes in the PD treatment strategy that drug developers can address. Amplifying patient priorities helps therapy makers target symptoms and aspects of PD most relevant to improving quality of life and speeding progress toward new therapies.
In September 2015, the FDA conducted a meeting to learn more about patients’ experiences with Parkinson’s disease. A PD patient advocate presented at the meeting and spoke about (1) the urgent need to address the wide range of symptoms many patients experience, (2) the importance of hearing directly from patients and (3) the need to speed progress in the development of new therapies. The broader PD community also completed a survey on living with Parkinson’s disease, the results of which were sent to the FDA to inform its understanding of PD and available treatments.
Once therapies are approved by the FDA, it’s critical to ensure that patients can actually access them. The price of drugs and coverage by insurance companies and Medicare/Medicaid also can impact a patient’s ability to use a therapy. The PD community advocates for affordability and accessibility.

7. safeguard access to care and support services
PROTECT Medicare and Medicaid programs.
BOLSTER government benefits (e.g., Social Security Disability Insurance).
EXPAND emerging technologies that can increase
access to specialized care and support.
These are a few examples of work to increase access to care and support services. Feel free to add examples of your own personal work in this area.
Eighty percent of people with Parkinson’s are on Medicare, and up to one-third of those individuals also are eligible for Medicaid. We advocate to protect the Medicare and Medicaid systems, in addition to strengthening these programs to better support people with PD. For example, for many years, Congress placed limits, or caps, on the amount of outpatient physical, occupational and speech-language therapy a Medicare beneficiary could receive each calendar year. The PD community tirelessly advocated for many years to repeal the caps so that patients could access the care they needed. In February 2018, Congress permanently removed the caps.
Over the years, the PD community has advocated to protect and expand government benefits that can help improve quality of life. For example, in the summer of 2016 the Social Security Administration (SSA) issued new rules for evaluating PD for disability insurance, recognizing that people living with PD can experience both motor and non-motor symptoms. Leading up to the creation of this new rule, individuals in the Parkinson's community sent over 300 comments to the SSA urging it to make this change.
Telemedicine is the remote delivery of health care services and clinical information using telecommunications technology, including internet, cellular, wireless, satellite and telephone services. Access to movement disorder specialists -- doctors who have additional training in Parkinson's disease -- is limited in certain areas of the country. Being able to see a physician using a computer could improve care for those who cannot travel to a specialist. Studies have shown that telemedicine can reduce hospitalization and keep people living safely and independently for longer. The PD community has advocated to increase access to telemedicine services in meetings with elected officials and during the 2016 Parkinson’s Policy Forum, an annual meeting of PD community advocates in Washington, D.C.

8. advocacy drives change
You can represent patient interests.
Share your story with lawmakers to highlight research and
care needs.
Contact policymakers to voice opposition or support for
specific bills.
Educate others on Parkinson’s and public policy at support
group meetings and local events.
Feel free to speak about specific advocacy activities you’ve been a part of, such as:
Responding to action alerts and sending s to your lawmakers on issues of importance
Meeting with elected officials in Washington, D.C. and/or your home district
Events you’ve attended to speak about policy and advocacy work
[NOTE FOR PRESENTER] Remind your audience that advocacy takes place 365 days a year. It is an activity you participate in all the time.

9. Policy and research UNITE at The Michael j. fox foundation
Mission
As the world’s largest nonprofit funder of PD research, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease and ensuring the development of improved therapies for those living with PD today.
MJFF works with scientists, drug makers, insurers, regulators and policymakers to help them understand patient priorities and unmet needs.
These stakeholders must fully comprehend the impact of PD as they make decisions about therapy development, approvals, coverage of treatments and access to support services.
As the world’s largest nonprofit funder of PD research, MJFF is dedicated to finding a cure for Parkinson’s and developing improved therapies for those living with the disease today.
The Foundation believes a unified research and policy strategy is key to accomplishing this mission.
MJFF works with a wide variety of stakeholders to further research and ensure patients and families have access to the therapies and services they need to live well. These players include scientists, drug developers, government regulators, policymakers and insurers. The Foundation works to educate these stakeholders on life with Parkinson’s disease and areas of unmet patient need to produce positive outcomes for the PD community.
Vital Stats
Founded in 2000 by actor Michael J. Fox
Over $800 million in research funded to date
88 cents of every dollar spent goes to
grants and initiatives to speed a cure

10. What to do next Speak up: Contact your elected officials to make your
voice heard.
Visit advocate.michaeljfox.org to take action
Sign up to receive action alerts at michaeljfox.org/act
Stay informed: Learn about the latest developments in
public policy.
MJFF blog: michaeljfox.org/policyblog
Facebook: facebook.com/michaeljfoxfoundation
Here are a few ways you can ask people to get involved:
advocate.michaeljfox.org will take people to the page that lists all the active policy issues you can take action on.
michaeljfox.org/act is where people can sign up for the MJFF list. Once registered, individuals will receive “action alerts.” These s are sent out when bills that could impact the PD community are moving through the legislative process. They give people more information on the issue and allow them to easily contact their member of Congress using our online tool. (If an individual is already on the MJFF list, they should be getting action alerts.)
The three links at the bottom direct to MJFF channels where we often post public policy and advocacy news.
[NOTE FOR PRESENTER] You can once again stress the importance of year-round advocacy. These are activities anyone can participate in at any time.