ENCOURAGE RESEARCH & INNOVATION
So little is understood about Chiari malformation, syringomyelia, Ehlers-Danlos syndrome, dysautonomia and many related neurological disorders. But funding is not always prioritized since the conditions are considered-- often incorrectly-- to be rare.
SUPPORT BIOMEDICAL AND BASIC SCIENCE RESEARCH.
The Neuro Connect Alliance strongly supports biomedical and basic science research funding through important national, scientific institutions.
MAINTAIN/EXPAND FUNDING FOR RESEARCH INSTITUTIONS.
We ask our political representatives to maintain or expand funding for bodies such as the National Institutes of Health (NIH), the Centers for Disease Control & Prevention (CDC), Agency for Healthcare Research & Quality (AHRQ), the Food & Drug Administration (FDA) and others.
Particular attention should be given to organizations like the Patient-Centered Outcomes Research Institute (PCORI), that place the expertise of patients and caregivers on the same level as that of scientists and medical professionals. Patient-centered, scientific research is absolutely key to finding answers for the millions of Americans affected by Chiari, syringomyelia, EDS, dysautonomia and more. Without continued input from patients and caregivers, no meaningful changes will be possible.
Funding is always in short supply. Specifically for chronic pain, the burden of the condition is much higher than the investment in medical research. The U.S. health care system spends upwards of $630 billion in pain care and loses inestimable hours of work over chronic pain... but the NIH only spent $500 million in general pain research, in comparison. That means we are potentially wasting billions of dollars, and people are still hurting! We need to remain strong in our support of the institutions that study these conditions!
Scientific research saves lives and money. Check out this fact sheet on how research funding has helped individuals living with pain in past years from Research!America to learn more.  More can always be done.
Funding for research into these conditions is not just an issue of money in Congress... actual laws and legislation can help fast-track cures and medical innovation!
Recent bipartisan legislation has begun the process of improving and prioritizing research in these fields.
RESEARCH, ESPECIALLY IN
One such piece of legislation that our Neuro Connect Partners have supported, known as 21st Century Cures, has done a lot to prioritize research:
Make more funds available for innovative research
Improve research collaboration
Incorporate more patient/caregiver perspectives
Streamline clinical trial processes
Increase access to experimental drugs for patients with serious conditions
Create a priority review process within the FDA for medical devices
Require CDC to expand surveillance of neurological disorders
Laws like this one are great. They are supported by all political parties and seek to improve the lives of millions affected by complex conditions...
...but there's so much more that needs to be done! Neurological disorders and multiple chronic conditions weigh a heavy burden on the American public. This burden should be more reflective of federal research spending. That's why we ask our Congress members to support legislation that prioritizes research in chronic illness, chronic/neuropathic pain and neurological disorders.
1. Darnell BD. To treat pain, study people in all their complexity. Nature. 2018 May;557(7703):7.
2. Research!America. https://www.researchamerica.org/sites/default/files/Pain_2017v2.pdf