| |
| |
|
|
A BILL TO BE ENTITLED
|
|
|
AN ACT
|
|
|
relating to establishment of the Texas Rare Disease Advisory |
|
|
Council. |
|
|
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: |
|
|
SECTION 1. Subtitle E, Title 2, Health and Safety Code, is |
|
|
amended by adding Chapter 101A to read as follows: |
|
|
CHAPTER 101A. TEXAS RARE DISEASE ADVISORY COUNCIL |
|
|
Sec. 101A.001. DEFINITIONS. In this chapter: |
|
|
(1) "Advisory council" means the Texas Rare Disease |
|
|
Advisory Council established under this chapter. |
|
|
(2) "Institution of higher education" means an |
|
|
institution of higher education or a private or independent |
|
|
institution of higher education, as those terms are defined by |
|
|
Section 61.003, Education Code. |
|
|
Sec. 101A.002. ESTABLISHMENT OF ADVISORY COUNCIL. (a) The |
|
|
Texas Rare Disease Advisory Council is established to advise the |
|
|
legislature, the governor, state agencies, and private entities |
|
|
that provide services or care to individuals with rare diseases in |
|
|
this state on the needs of those individuals. |
|
|
(b) The department shall designate an institution of higher |
|
|
education in this state on agreement of the institution to provide |
|
|
administrative support to the advisory council in discharging |
|
|
duties under this chapter. |
|
|
Sec. 101A.003. ADVISORY COUNCIL MEMBERS. (a) The advisory |
|
|
council is composed of: |
|
|
(1) one representative of the institution of higher |
|
|
education providing administrative support under Section 101A.002, |
|
|
appointed by the president of the institution; |
|
|
(2) one representative of the department, appointed by |
|
|
the commissioner; |
|
|
(3) one representative of the commission whose duties |
|
|
involve the medical assistance program under Chapter 32, Human |
|
|
Resources Code, appointed by the executive commissioner; |
|
|
(4) one representative of the Texas Department of |
|
|
Insurance, appointed by the commissioner of insurance; and |
|
|
(5) the following members, appointed by majority vote |
|
|
of the members of the advisory council described by Subdivisions |
|
|
(1)-(4): |
|
|
(A) one geneticist licensed and practicing in |
|
|
this state; |
|
|
(B) one registered nurse or advanced practice |
|
|
registered nurse licensed and practicing in this state with |
|
|
experience treating rare diseases; |
|
|
(C) one physician licensed and practicing in this |
|
|
state with experience treating rare diseases; |
|
|
(D) one hospital administrator, or the hospital |
|
|
administrator's designee, of a hospital in this state that provides |
|
|
care to persons diagnosed with a rare disease; |
|
|
(E) at least two persons with a rare disease; |
|
|
(F) at least one caregiver of a person with a rare |
|
|
disease; |
|
|
(G) one representative of a rare disease patient |
|
|
organization that operates in this state; |
|
|
(H) one pharmacist with experience dispensing |
|
|
drugs used to treat rare diseases; |
|
|
(I) one representative of the biopharmaceutical |
|
|
industry; |
|
|
(J) one representative of a health insurance |
|
|
company; and |
|
|
(K) one member of the scientific community who is |
|
|
engaged in rare disease research, including a medical researcher |
|
|
with experience conducting research on rare diseases. |
|
|
(a-1) Notwithstanding Subsection (a) and not later than |
|
|
December 1, 2025, the initial members of the advisory council shall |
|
|
be appointed as follows: |
|
|
(1) the appropriate appointing authority shall |
|
|
appoint the members described by Subsections (a)(1)-(4); and |
|
|
(2) the initial presiding officer of the advisory |
|
|
council appointed under Section 101A.004(b-1) shall appoint the |
|
|
members described by Subsection (a)(5). |
|
|
(a-2) This subsection and Subsection (a-1) expire September |
|
|
1, 2031. |
|
|
(b) Except as otherwise provided by Subsection (c), an |
|
|
individual must be a resident of this state to be eligible for |
|
|
appointment as a member of the advisory council. |
|
|
(c) The representative of the biopharmaceutical industry |
|
|
appointed under Subsection (a)(5)(I) may be a resident of any |
|
|
state. |
|
|
(d) If a vacancy occurs on the advisory council, the |
|
|
appropriate appointing authority shall, in a timely manner and in |
|
|
compliance with the requirements of this section, appoint a |
|
|
successor to serve for the remainder of the unexpired term. |
|
|
(e) The advisory council shall conduct the member |
|
|
appointment process in a transparent manner to provide interested |
|
|
individuals an opportunity to apply for membership on the advisory |
|
|
council. |
|
|
Sec. 101A.004. PRESIDING OFFICER. (a) Members of the |
|
|
advisory council shall select from among the advisory council's |
|
|
members a presiding officer. |
|
|
(b) A person who holds an elected or appointed state |
|
|
governmental position or a state employee may not be appointed as |
|
|
the presiding officer of the advisory council. |
|
|
(b-1) Notwithstanding Subsection (a) or Section 101A.005(b) |
|
|
and not later than October 1, 2025, the governor, or the governor's |
|
|
designee, shall appoint an initial presiding officer of the |
|
|
advisory council. This subsection expires September 1, 2031. |
|
|
Sec. 101A.005. TERMS. (a) Members of the advisory council |
|
|
serve staggered three-year terms, with the terms of one-third of |
|
|
the members, or as near to one-third as possible, expiring each |
|
|
year. |
|
|
(a-1) Notwithstanding Subsection (a), an initial advisory |
|
|
council member appointed under Section 101A.003(a-1) may serve a |
|
|
two-year, three-year, or four-year term. This subsection expires |
|
|
September 1, 2031. |
|
|
(b) The presiding officer of the advisory council serves a |
|
|
two-year term. |
|
|
(b-1) Notwithstanding Subsection (b), the initial presiding |
|
|
officer of the advisory council appointed under Section |
|
|
101A.004(b-1) serves a three-year term. This subsection expires |
|
|
September 1, 2031. |
|
|
Sec. 101A.006. DUTIES. The advisory council shall: |
|
|
(1) consult with experts on rare diseases to develop |
|
|
policy recommendations for improving patient access to: |
|
|
(A) rare disease specialists; |
|
|
(B) affordable and comprehensive health care |
|
|
coverage; |
|
|
(C) relevant diagnostic procedures for rare |
|
|
diseases; |
|
|
(D) timely and quality treatment for rare |
|
|
diseases; and |
|
|
(E) other needed services, as determined by the |
|
|
advisory council; |
|
|
(2) make recommendations to state agencies and |
|
|
insurers that provide services to persons with a rare disease on the |
|
|
impact on treatment provision for the person of prior authorization |
|
|
requirements, cost-sharing requirements, benefits tiering, or |
|
|
other utilization management procedures; |
|
|
(3) make recommendations to improve coverage under the |
|
|
state Medicaid program of drugs for rare disease patients, |
|
|
including engagement with the Drug Utilization Review Board, to |
|
|
improve health benefit plan coverage of diagnostic procedures, and |
|
|
to facilitate access to necessary health care providers with |
|
|
expertise in the treatment of rare diseases; |
|
|
(4) identify best practices to reduce health |
|
|
disparities and achieve health equity in the research, diagnosis, |
|
|
and treatment of rare diseases in this state; and |
|
|
(5) identify best practices to ensure continuity of |
|
|
care for rare disease patients transitioning from pediatric to |
|
|
adult care. |
|
|
Sec. 101A.007. BIENNIAL REPORT. (a) Not later than |
|
|
September 1 of each even-numbered year, the advisory council shall |
|
|
prepare and submit a report to the governor, department, and |
|
|
standing committees of the senate and house of representatives with |
|
|
primary jurisdiction over health care and appropriations a report |
|
|
on the advisory council's activities, funding, and legislative |
|
|
recommendations. |
|
|
(b) Before finalizing and submitting the report under |
|
|
Subsection (a), a draft of the report must be made available for |
|
|
public comment and discussion at a meeting open to the public. |
|
|
Sec. 101A.008. FUNDING. The advisory council may solicit |
|
|
and accept gifts, grants, and donations from any source to |
|
|
establish and operate the advisory council. |
|
|
Sec. 101A.009. ADVISORY COUNCIL MEETINGS. (a) The |
|
|
advisory council shall meet at least once each quarter. |
|
|
(b) A meeting conducted under this section may be in person |
|
|
or by video conference call, as determined by the presiding |
|
|
officer. |
|
|
(c) Not later than January 1, 2026, the advisory council |
|
|
shall hold an initial meeting. During the 2026 calendar year, the |
|
|
advisory council shall meet at least once per month. This |
|
|
subsection expires September 1, 2027. |
|
|
Sec. 101A.010. PUBLIC OUTREACH. The advisory council |
|
|
shall: |
|
|
(1) provide opportunities to inform the public about |
|
|
the advisory council's work and for the public to provide comments |
|
|
on that work; and |
|
|
(2) create and maintain a public Internet website to: |
|
|
(A) provide public access to meeting minutes; |
|
|
(B) provide notice of upcoming advisory council |
|
|
meetings; and |
|
|
(C) allow for the submission of public comments. |
|
|
SECTION 2. This Act takes effect September 1, 2025. |