,i #aafth ,,congress #ast ,session ,h4 ,r4 #dcic ,,in ,,the ,,house ,,of ,,representatives ,september #ah1 #bjai,mr4 ,swalwell of ,california 7for himself1 ,mr4 ,fitzpatrick1 ,mr4 ,gallego1 ,mr4 ,rouda1 and ,ms4 ,norton7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend title ,,xix of the ,social ,security ,act to provide for a ,state option under the ,state ,medicaid plan to provide ,,dna sequencing clinical services for certain children1 provide for a study by the ,national ,academy of ,medicine on the use of genetic and genomic testing to improve health care1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,advancing ,access to ,precision ,medicine ,act4 #b4 ,state option to provide ,,dna sequencing clinical services for certain children ,title ,,xix of the ,social ,security ,act 7#db ,u4,s4,c4 #acif et seq47 is amended by adding at the end the following new section3 #aidg4 ,state option to provide ,,dna sequencing clinical services for certain children 7a7 ,in general ,notwithstanding section #aijb7;a77#a7 7relating to statewideness71 section #aijb7;a77#aj77;,b7 7relating to comparability71 and any other provision of this title for which the ,secretary determines it is necessary to waive in order to implement this section1 beginning on the first day of the first fiscal quarter that begins on or after the date of the enactment of this section1 a ,state1 at its option as a ,state plan amendment1 may provide for medical assistance under this title to an eligible individual for purposes of providing the individual with ,,dna sequencing clinical services4 7b7 ,payments 7#a7 ,in general ,a ,state shall provide a health care provider 7as defined by the ,state7 with payments for the provision of ,,dna sequencing clinical services to any eligible individual4 ,payments made to a health care provider for such services shall be treated as medical assistance for purposes of section #aijc7;a71 except that1 during the first #h fiscal year quarters that the ,state plan amendment is in effect1 the ,federal medical assistance percentage applicable to such payments shall be equal to #ge percent4 7#b7 ,methodology ,the ,state shall specify in the ,state plan amendment the methodology the ,state will use for determining payment for the provision of ,,dna sequencing clinical services4 ,such methodology for determining payment shall be established consistent with section #aijb7;a77#cj77;,a74 7#c7 ,planning grants 7,a7 ,in general ,beginning on the date described in subsection 7a71 the ,secretary may award planning grants to ,states for purposes of developing a ,state plan amendment under this section4 ,a planning grant awarded to a ,state under this paragraph shall remain available until expended4 7,b7 ,state contribution ,a ,state awarded a planning grant shall contribute an amount equal to the ,state percentage determined under section #aije7;b7 for each fiscal year for which the grant is awarded4 7c7 ,hospital referrals ,a ,state shall include in the ,state plan amendment a requirement for any hospital that is a participating provider under the ,state plan 7or a waiver of such plan7 to establish procedures for referring any eligible individual who seeks or needs treatment in a hospital emergency department to a health care provider who is qualified 7as determined by the ,state7 to provide ,,dna sequencing clinical services4 7d7 ,reports by ,states ,not later than three years after the date on which the ,state plan amendment under this section is approved1 a ,state shall submit a report to the ,administrator of the ,centers for ,medicare ,medicaid ,services and the ,administrator of the ,health ,resources and ,services ,administration on-- 7#a7 the extent to which ,,dna sequencing clinical services reduce health disparities2 and 7#b7 the extent to which coverage under the ,state plan 7or a waiver of such plan7 impedes the use of genetic and genomic testing that may improve clinical outcomes for eligible individuals enrolled in the ,state plan 7or under a waiver of such plan74 7e7 ,reports by health care providers ,as a condition for receiving payment for ,,dna sequencing clinical services provided to an eligible individual1 a health care provider shall report to the ,state1 in accordance with such requirements as the ,secretary shall specify1 on all applicable measures for determining the quality of such services4 7f7 ,definitions ,in this section3 7#a7 ,eligible individual ,the term eligible individual means an individual who-- 7,a7 is eligible for medical assistance under the ,state plan 7or a waiver of such plan72 7,b7 is under the age of #ba 7or1 at the option of the ,state1 under the age of #bj1 #ai1 or #ah as the ,state may choose71 or in the case of an individual described in section #aijb7;a77#aj77;,a77i77,,ix71 under the age of #bf2 7,c7 has been referred or admitted to a pediatric intensive care unit for a chronic or undiagnosed disease2 7,d7 has been seen by at least one medical specialist for such chronic or undiagnosed disease2 and 7,e7 is suspected by at least one medical specialist to have a pediatric-onset genetic disease4 7#b7 ,,dna sequencing clinical services ,the term ,,dna sequencing clinical services1 with respect to an eligible individual-- 7,a7 means a determination of an exact sequence of deoxyribonucleic acid bases in the genome of such individual1 and1 if for the sole benefit of the individual1 a biological parent of such individual for the purpose of determining whether one or more potentially disease-causing genetic variants are present in the genome of such individual or such biological parent2 and 7,b7 includes-- 7i7 sequencing of the entire genome1 of the exome1 of a panel of genes1 or other regions of the genome2 and 7ii7 any analysis1 interpretation1 and data report derived from such sequencing4 4 #c4 ,national ,academy of ,medicine study 7a7 ,in general ,not later than #d years after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services shall enter into an arrangement with the ,national ,academy of ,medicine under which the ,academy agrees to study-- 7#a7 how genetic and genomic testing may improve preventative care and precision medicine2 7#b7 how genetic and genomic testing may reduce health disparities2 7#c7 how the ,federal ,government may help to reduce barriers to genetic and genomic testing1 including-- 7,a7 encouraging the expansion of health insurance coverage of genetic and genomic testing1 including diagnostic1 predictive1 and presymptomatic testing1 and ,,dna sequencing clinical services 7as defined in section #aidg of the ,social ,security ,act 7as added by section #b772 7,b7 supporting the collection of evidence for the clinical utility and appropriate use of genetic and genomic tests2 and 7,c7 improving access to genetic counselors1 pathologists1 and other relevant professions1 including strengthening related workforce education and training efforts2 7#d7 7,a7 the extent to which coverage provisions in the ,medicare and ,medicaid programs under titles ,,xviii and ,,xix of the ,social ,security ,act 7#db ,u4,s4,c4 #acie et seq41 #acif et seq47 may restrain the use of genetic and genomic testing that may improve clinical outcomes for beneficiaries2 7,b7 the extent to which coverage provided pursuant to section #aidg of the ,social ,security ,act 7as added by section #b7 increased the use of genetic and genomic testing and improved clinical outcomes for beneficiaries2 and 7,c7 how the ,centers for ,medicare ,medicaid ,services may make coverage determinations that better suit a precision medicine approach to treatment2 and 7#e7 how genetic and genomic testing may improve health outcomes for all populations in the ,united ,states1 including-- 7,a7 individuals with a rare disease1 including-- 7i7 a metabolic disease2 7ii7 a hereditary cancer syndrome2 and 7iii7 a neurologic disease with known treatments2 and 7,b7 special populations1 including-- 7i7 infants and children2 7ii7 critically ill 7non-infectious and non-trauma7 patients2 7iii7 transplant patients2 7iv7 individuals with cardiac disease2 and 7v7 individuals with1 or who have a family history of1 a birth defect or developmental disability4 7b7 ,report 7#a7 ,in general ,the arrangement under subsection 7a7 shall provide for the ,national ,academy of ,medicine to submit1 not later than #f years after the date of enactment of this ,act1 a report on the results of the study under subsection 7a7 to-- 7,a7 the ,secretary of ,health and ,human ,services2 7,b7 the ,committee on ,ways and ,means and the ,committee on ,energy and ,commerce of the ,house of ,representatives2 and 7,c7 the ,committee on ,finance and the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate4 7#b7 ,consultation ,the arrangement under subsection 7a7 shall provide for the ,national ,academy of ,medicine1 in developing the report required by paragraph 7#a71 to consult with physicians1 other health professionals1 health educators1 health professional organizations1 relevant companies1 patients1 patient organizations1 the ,health ,resources and ,services ,administration1 the ,national ,cancer ,institute1 the ,national ,institutes of ,health1 the ,agency for ,healthcare ,research and ,quality1 and the ,centers for ,medicare ,medicaid ,services4 7#c7 ,use of information ,the ,national ,academy of ,medicine shall1 to the extent possible1 in conducting the study under subsection 7a71 utilize information included in the reports submitted pursuant to subsections 7d7 and 7e7 of section #aidg of the ,social ,security ,act 7as added by section #b74