,,ii #aaith ,,congress #ast ,session ,s4 #did ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,february #aj1 #bjbe,mr4 ,schmitt 7for himself1 ,ms4 ,klobuchar1 ,mr4 ,boozman1 and ,ms4 ,hassan7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to establish a national plan to coordinate research on epilepsy1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,national ,plan for ,epilepsy ,act4 #b4 ,findings ,congress finds as follows3 7#a7 ,epilepsy is a brain disorder that causes recurring and unprovoked seizures and affects people of all ages1 affecting nearly #c1jjj1jjj adults and #def1jjj children in the ,united ,states4 7#b7 ,epilepsy and seizures can develop in any person at any age4 ,one in #bf people will develop a form of epilepsy in their lifetime1 with people from all demographic groups and walks of life being impacted4 7#c7 ,in approximately half of all cases of epilepsy1 the underlying cause of the disease is unknown4 7#d7 ,epilepsy is a spectrum disease comprised of many diagnoses and an ever-growing number of rare epilepsies4 ,there are many different types of seizures and varying levels of seizure control4 7#e7 ,over #cj percent of people with epilepsy live with uncontrolled seizures4 7#f7 ,individuals with epilepsy have a #c-times higher risk of early death than the general population and that risk is even higher for individuals with uncontrolled seizures4 7#g7 ,thirty-two percent of adults with epilepsy are unable to work4 7#h7 ,fifty-three percent of individuals with uncontrolled seizures live in households earning less than #be1jjj per year4 7#i7 ,health care costs associated with epilepsy and seizures exceed #ed1jjj1jjj1jjj per year in the ,united ,states4 #c4 ,establishing a ,national ,plan for ,epilepsy ,part ,b of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bdc et seq47 is amended by adding at the end the following3 #cbj;,c4 ,programs relating to epilepsy 7a7 ,national ,plan for ,epilepsy 7#a7 ,in general ,the ,secretary shall carry out a national project1 to be known as the ,national ,plan for ,epilepsy 7referred to in this section as the ,national ,plan71 to prevent1 diagnose1 treat1 and cure epilepsy4 7#b7 ,activities ,in carrying out the ,national ,plan1 the ,secretary shall-- 7,a7 establish1 maintain1 and periodically update an integrated national plan to prevent1 diagnose1 treat1 and cure epilepsy2 7,b7 provide information1 including an estimate of the level of ,federal investment in preventing1 diagnosing1 treating1 and curing epilepsy2 7,c7 coordinate research and services related to epilepsy1 across all ,federal agencies2 7,d7 encourage the development of safe and effective treatments1 strategies1 and other approaches to prevent1 diagnose1 treat1 and cure epilepsy or to enhance functioning and improve quality of life for individuals with epilepsy and their caregivers2 7,e7 improve the-- 7i7 early diagnosis of epilepsy2 and 7ii7 coordination of the care and treatment of individuals living with epilepsy2 7,f7 review the impact of epilepsy on the physical1 mental1 and social health of individuals living with epilepsy and their caregivers2 7,g7 solicit public comments and consider consensus recommendations from collaborations in the epilepsy community2 7,h7 carry out an annual assessment on progress of the activities described in this subsection2 7,i7 coordinate with international bodies1 to the degree possible1 to integrate and inform the global mission to prevent1 diagnose1 treat1 and cure epilepsy2 and 7,j7 carry out other such activities as the ,secretary determines appropriate4 7b7 ,annual assessment ,not later than #b years after the date of enactment of the ,national ,plan for ,epilepsy ,act1 and annually thereafter1 the ,secretary shall carry out an assessment of the ,nation's progress in preparing for and responding to the escalating burden of epilepsy4 ,such assessment shall include-- 7#a7 recommendations for priority actions2 7#b7 a description of the steps that have been1 or should be1 taken to implement such recommendations2 and 7#c7 such other items as the ,secretary determines appropriate4 7c7 ,advisory ,council 7#a7 ,in general ,the ,secretary shall establish and maintain an ,advisory ,council on ,epilepsy ,research1 ,care1 and ,services 7referred to in this section as the ,advisory ,council7 to advise the ,secretary on epilepsy-related issues4 7#b7 ,membership ,the ,advisory ,council shall be comprised of-- 7,a7 representatives appointed by the ,secretary from relevant ,federal departments and agencies1 including-- 7i7 the ,national ,institutes of ,health2 7ii7 the ,centers for ,medicare ,medicaid ,services2 7iii7 the ,centers for ,disease ,control and ,prevention2 7iv7 the ,food and ,drug ,administration2 7v7 the ,health ,resources and ,services ,administration2 7vi7 the ,department of ,defense2 and 7vii7 the ,department of ,veterans ,affairs2 and 7,b7 expert non-,federal members appointed by the ,secretary that reflect the diversity of epilepsy1 including-- 7i7 #d individuals1 each of whom is living with a different type of epilepsy2 7ii7 #b family caregivers for individuals with epilepsy2 7iii7 #b licensed or accredited health care providers supported by a relevant professional medical society1 including at least #a epileptologist or neurologist2 7iv7 #b biomedical researchers with epilepsy-related expertise in basic1 translational1 or clinical population science or drug development science2 and 7v7 #c representatives from #c separate nonprofit organizations directly connected with epilepsy that have demonstrated experience in epilepsy research or epilepsy patient care and other services4 7#c7 ,meetings 7,a7 ,in general ,the ,advisory ,council shall meet at least once each quarter4 7,b7 ,meetings with other experts ,not later than #b years after the date of enactment of the ,national ,plan for ,epilepsy ,act1 and every #b years thereafter1 the ,advisory ,council shall convene a meeting of ,federal and non-,federal organizations to discuss epilepsy research4 7,c7 ,public meetings ,all meetings of the ,advisory ,council shall be open to the public4 7#d7 ,reporting ,not later than #ah months after the date of enactment of the ,national ,plan for ,epilepsy ,act1 and every #b years thereafter1 the ,advisory ,council shall provide to the ,secretary and ,congress a report containing-- 7,a7 an evaluation of all federally funded efforts in preventing1 diagnosing1 treating1 and curing epilepsy1 and the outcomes of such efforts2 7,b7 recommendations for priority actions to better coordinate1 expand1 and better support ,federal programs in order to better support people with epilepsy1 epilepsy research1 and data collection2 7,c7 recommendations to-- 7i7 provide effective1 timely1 and responsive diagnosis treatment and care to improve health outcomes and quality of life2 7ii7 foster research and innovation leading to more effective treatments and potential cures for epilepsy2 7iii7 strengthen data and information systems including better surveillance of epilepsy2 7iv7 increase public awareness about epilepsy and reduce stigma and discrimination2 7v7 increase access to expert and specialized care for people with epilepsy2 7vi7 eliminate access to care disparities experienced by individuals with epilepsy2 7vii7 prevent sudden unexpected death in epilepsy and other epilepsy-related mortalities2 7viii7 reduce the financial impact of epilepsy on families living with epilepsy2 7ix7 prevent epilepsy and promote healthy behaviors2 and 7x7 an evaluation of the implementation of the ,national ,plan1 and its outcomes4 7d7 ,annual reports ,the ,secretary shall annually submit to ,congress a report that includes-- 7#a7 an evaluation of all federally funded efforts in epilepsy research1 prevention1 diagnosis1 treatment1 clinical care1 and institutional-1 home-1 and community-based programs1 and the outcomes of such efforts2 7#b7 recommendations for-- 7,a7 priority actions based on the most recent assessment submitted by the ,secretary under subsection 7b7 and the recommendations contained in the most recent report of the ,advisory ,council under subsection 7c77#d72 7,b7 priority actions to improve all federally funded efforts in epilepsy research1 prevention1 diagnosis1 treatment1 clinical care1 and institutional-1 home-1 and community-based programs2 and 7,c7 implementation steps to address priority actions described in subparagraphs 7,a7 and 7,b72 and 7#c7 a description of the progress made in carrying out the ,national ,plan4 7e7 ,data sharing ,agencies both within the ,department of ,health and ,human ,services and outside of such ,department that have data relating to epilepsy shall share such data with the ,secretary as necessary to enable the ,secretary to complete the reports described in subsection 7d74 7f7 ,sunset ,this section shall cease to be effective on ,december #ca1 #bjce4 4