SB 2463 — Rare diseases; UMMC and other agencies shall prepare report on the state of in Mississippi.

SB2463 (As SentPassed tothe Governor)Senate) - 2018 Regular Session MISSISSIPPI LEGISLATURE Regular Session To:

Senator(s) Moran, Wiggins, Dearing, McMahan Senate Bill 2463 (As SentPassed tothe Governor)Senate) AN ACT TO PROVIDEESTABLISH THATA THE UNIVERSITY OF MISSISSIPPI MEDICALRARE CENTERDISEASE ASADVISORY THECOUNCIL LEADWITHIN AGENCY, TOGETHER WITH THE STATE DEPARTMENT OF HEALTH, THE DIVISION OF MEDICAID AND THE MISSISSIPPI HEALTH INFORMATIONTO NETWORK,EDUCATE SHALLMEDICAL COOPERATEPROFESSIONALS, WITHGOVERNMENTAL EACHAGENCIES OTHERAND IN PREPARING A COMPREHENSIVE REPORT ON THE STATEPUBLIC OFABOUT RARE DISEASES INAND MISSISSIPPI,TO INCLUDINGFUND THERESEARCH INCIDENCE OF RARE DISEASES IN THE STATE,DEVELOPMENT THE STATUS OF THETREATMENTS RAREFOR DISEASE COMMUNITY, AND TREATMENT AND SERVICES PROVIDED TO PERSONS WITH RARE DISEASESDISEASES; IN THE STATE;

TO PROVIDE THATFOR THE REPORTMEMBERSHIP SHALLOF BE PRESENTED TO THE CHAIRSCOUNCIL OFAND CERTAINPRESCRIBE LEGISLATIVEITS COMMITTEESDUTIES NOTAND LATERRESPONSIBILITIES; THAN DECEMBER 1, 2019;

TO PROVIDE THAT THE COUNCIL SHALL APPLY FOR AND EXPEND GRANTS FROM THE FEDERAL GOVERNMENT OR PRIVATE SOURCES FOR FUNDING THE ACTIVITIES OF THE COUNCIL;

     SECTION 1.  Findings.  The Legislature finds and declares:

          (b)  The exact cause for many rare diseases remains unknown.  However, eighty percent (80%) of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes.  ThoseSuch diseases are referred to as genetic diseases.  Genetic disease can be passed down from generation to generation, explaining why certain rare diseases run in families.  It is also estimated that about half of all rare diseases affect children;

shortage of medical specialists who are familiar with, and can provide treatment for, rare diseases;

and the inability to access therapies and medication that are used by doctors to treat rare diseases but have not been approved by the federalFederal Food and Drug Administration (FDA) for that specific purpose;

and           (e)  It wouldis, betherefore, veryan beneficialappropriate topublic personspolicy infor Mississippi with rare diseases and to researchersestablish whoan areadvisory tryingbody, towhose findmembership wayswould tobe treatcomprised orof preventpersons thewith occurrencesuitable ofqualifications rarefor diseasesthis topurpose, examineincluding thepersons existingliving datawith on rare diseasesdiseases, in Mississippi and compile it in a detailed report, which then could be analyzed and used to educate medical professionals, government agenciesagencies, and the public about rare diseases as an important public health issue, and to encourage and fund research in the development of new treatments for rare diseases.

     SECTION 2.  TheEstablishment University of Mississippia MedicalRare CenterDisease (UMMC)Advisory asCouncil.  the(1)  leadThere agency,is togetherestablished with the State Department of Health, the Division of Medicaid and the Mississippi HealthRare InformationDisease NetworkAdvisory (MS-HIN),Council shall(council) cooperate with each other in preparing a comprehensive report on the stateMississippi of rare diseases in Mississippi, including the incidence of rare diseases in the state, the status of the rare disease community, and treatment and services provided to persons with rare diseases in the state.  The State Department of Health,Health. the Division of Medicaid and the MS-HIN shall provide to UMMC and each other all claims data and patient encounter data relating to the diagnosis and treatment of rare diseases and all related research and documentation relating to rare diseases, which shall be compiled, examined and analyzed in the report.  The report shall be presented to the Chairs of the House Public Health and Human Services Committee, Senate Public Health and Welfare Committee, and the House and Senate Medicaid Committees not later than December 1, 2019.

     SECTION(2)  3. The Thisadvisory actcouncil shall takeconsist effectof andmembers beas infollows: force from and after its passage.

          (a)  Employees of the Mississippi Department of Health and other state agencies concerned with the provision of care to persons with rare diseases appointed by the Executive Officer of the State Department of Health;

and           (b)  Public members to be appointed by the Executive Director of the State Department of Health, who shall include:

              (i)  Two (2) physicians licensed to practice in Mississippi who have expertise in treating patients with rare diseases, one of whom shall be a pediatrician who provides care to children with rare diseases;

              (ii)  A registered professional nurse licensed in Mississippi who has expertise in providing care to patients with rare diseases;

              (iii)  Two (2) representatives of hospitals in Mississippi;

              (iv)  A representative of the health insurance industry;

              (v)  A representative of the biopharmaceutical industry;

              (vi)  A representative of the scientific community who is engaged in rare disease research;

              (vii)  Two (2) parents of a child with a rare disease;

              (viii)  Two (2) persons with a rare disease;

              (ix)  Two (2) patient organizations that operate within Mississippi;

and               (x)  A representative of the primary health care association provider industry in the state.

     (3)  Upon or after the Advisory Council is first convened, the council may advise the Executive Director of the State Department of Health on additional at-large appointments to the council that may be necessary to carry out its duties.  At-large appointments to the council may serve on an ad-hoc basis.

     (4)  Members shall serve for four-year terms and may be reappointed.  Vacancies in the membership of the Advisory Council shall be filled in the same manner provided for the original appointments.  The public members of the council shall serve without compensation but may be reimbursed for travel and other miscellaneous expenses necessary to perform their duties within the limits of funds made available to the council for its purposes.

     (5)  The council shall organize as soon as practicable after the appointment of its members and shall select a chairperson and vice chairperson from among its members.  The chairperson shall appoint a secretary who need not be a member of the council.

     (6)  The council shall meet periodically, but at least three (3) times annually.  The council shall be entitled to call to its assistance, and avail itself of the services of the employees of, any state, county, or municipal department, board, bureau, commission, or agency as it may require and as may be available to it for its purposes.

     (7)  The State Department of Health may provide staff services to the advisory council.

     SECTION 3.  Purpose and duties.  (1)  The purpose of the Council shall be to:

          (a)  Coordinate statewide efforts for the study of the incidence of rare disease within Mississippi and the status of the rare disease community;

          (b)  Act as the advisory body on rare diseases to the Legislature and state departments, agencies, commissions, authorities, and private agencies that provide services to, or are charged with the care of, persons with rare diseases;

and           (c)  Coordinate the performance of the council's duties with other state rare disease advisory bodies, community-based organizations, and other public and private organizations for the purpose of ensuring greater cooperation between state and federal activities regarding the research, diagnosis, and treatment of rare diseases.  Federal agencies may include, but are not exclusive to, the U.S.

National Institutes of Health (NIH) and the U.S.

Food and Drug Administration (FDA).  Such coordination shall require, when appropriate:

              (i)  Disseminating the council's research, identified best practices, and policy recommendations;

and               (ii)  The utilization of common research collection and dissemination procedures.

     (2)  The duties of the council shall be to:

          (a)  Research and determine the most appropriate method to collect rare disease data, and such information concerning these patients as the council deems necessary and appropriate to conduct thorough and complete surveys of rare disease diagnosed in Mississippi, subject to all applicable privacy laws and protection.

          (b)  The council shall ensure that the duties described in paragraph (a) are carried out in a manner that is coordinated and interoperable with similar research being conducted at the state and federal level.

          (c)  Research and identify priorities relating to the quality and cost-effectiveness of, and access to, treatment and services provided to persons with rare diseases in Mississippi, and develop policy recommendations on those issues.