Rare diseases adv. council

AN ACT Relating to creating an advisory council on rare diseases; 1
adding new sections to chapter 43.70 RCW; and creating a new section.2
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF WASHINGTON:3
NEW SECTION. Sec. 1. The legislature finds that:4
(1) Rare diseases are those that affect fewer than 200,000 people 5
in the United States. There are over 7,000 rare diseases affecting 6
approximately 30,000,000 Americans and 50 percent of those are 7
children; 8
(2) The exact cause for many rare diseases remains unknown. 9
However, 80 percent of rare diseases are genetic in origin and can be 10
linked to mutations in a single gene or in multiple genes which can 11
be passed down from generation to generation; and 12
(3) A person suffering with a rare disease faces a wide range of 13
challenges, including delays in obtaining a diagnosis, being 14
misdiagnosed, shortages of medical specialists who can provide 15
treatment for rare diseases, and a lack of therapies and medications 16
that are used by doctors to treat rare diseases. 17
NEW SECTION. Sec. 2. A new section is added to chapter 43.70 18
RCW to read as follows: 19
S-0233.1
SENATE BILL 5064
State of Washington 69th Legislature 2025 Regular Session
By Senators Liias, Holy, Stanford, Wagoner, Lovick, Gildon,
Cleveland, Cortes, Fortunato, Harris, Nobles, Riccelli, and Warnick
Prefiled 12/16/24. Read first time 01/13/25. Referred to Committee
on Health & Long-Term Care.
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(1) An advisory council on rare diseases is established within 1
the University of Washington school of medicine to advise the 2
secretary of health on research, diagnosis, treatment, and education 3
related to rare diseases. 4
(2) The secretary of health shall appoint 12 voting members to 5
the council to include: 6
(a) Four clinicians and researchers specializing in rare 7
diseases, including at least one representative from a pediatric 8
hospital, at least one representative from a hospital or academic 9
research institution east of the crest of the Cascade mountains, and 10
at least one representative from a hospital or academic research 11
institution west of the crest of the Cascade mountains, from the 12
following professions: 13
(i) A physician licensed and practicing in the state with 14
experience researching, diagnosing, or treating rare diseases;15
(ii) A registered nurse, advanced practice registered nurse, 16
genetic counselor, or social worker licensed and practicing in the 17
state with experience with patients with rare diseases;18
(iii) A medical researcher with experience conducting research 19
concerning rare diseases; and 20
(iv) A representative from an academic research institution in 21
this state that receives any grant funding for rare disease research;22
(b) Four individuals representing patients, including:23
(i) Two patients living with a rare disease; 24
(ii) A rare disease patient caregiver; and 25
(iii) A representative from a rare disease foundation or patient 26
advocacy group; 27
(c) The director of the department of health of the children and 28
youth with special health care needs program, or their designee;29
(d) A representative from the health care authority; and30
(e) Two representatives from the life sciences industry that 31
focus on developing therapeutic products for rare disease patients, 32
research efforts related to those endeavors, or have a demonstrable 33
understanding of the path to commercialization of such products.34
(3) Members must be selected to ensure representation from both 35
east and west of the crest of the Cascade mountains.36
(4) Voting members shall be appointed to serve a three-year term. 37
No member may serve more than three consecutive terms. A vacancy on 38
the council must be filled in the same manner as the original 39
appointment. An individual appointed to fill a vacancy created other 40
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than by expiration of a term must be appointed for the unexpired term 1
of the member whom the individual is to succeed in the same manner as 2
the original appointment. 3
(5) Members of the council may be reimbursed for travel expenses 4
as provided in RCW 43.03.050 and 43.03.060. 5
(6) Subject to amounts appropriated for this specific purpose, 6
the University of Washington shall provide staff support to the 7
council including physician leadership. 8
(7) The council shall self-select a chair. The chair shall 9
convene the first meeting of the council no later than six months 10
after the effective date of this section. Following the first 11
meeting, the council shall meet upon the call of the chair or upon 12
the request of a majority of the members, but no less than once per 13
quarter after the first meeting. 14
(8) A majority of the members shall constitute a quorum. A 15
majority vote of a quorum shall be required for any official action 16
of the council. 17
(9) For purposes of this section, "rare disease" means a disease 18
that affects fewer than 200,000 people in the United States.19
NEW SECTION. Sec. 3. A new section is added to chapter 43.70 20
RCW to read as follows: 21
(1) The advisory council on rare diseases established in section 22
2 of this act shall: 23
(a) Act as the advisory body on rare diseases to the secretary of 24
health on research, diagnosis, treatment, and education related to 25
rare diseases; 26
(b) Advise on and coordinate efforts for the study of incidence 27
and prevalence of rare diseases in the state and the status of the 28
rare disease community, including examination of: 29
(i) Issues regarding quality of care outcomes and cost 30
effectiveness of earlier diagnoses and treatment of rare diseases; 31
and 32
(ii) Access to treatment and services available to persons with 33
rare diseases in the state; 34
(c) Identify effective research-based strategies that have been 35
developed to help diagnose, treat, and prevent rare diseases;36
(d) Make recommendations on how to better educate and inform 37
medical providers, schools, and public health districts around the 38
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diagnosis, treatment, and access to care for persons living with a 1
rare disease, including support for their families and caregivers;2
(e) Develop effective strategies to raise public awareness of 3
rare diseases in the state; and 4
(f) Make recommendations on establishing a website for persons 5
living with a rare disease, their families, and their caregivers, or 6
those seeking diagnosis, to access a centralized, publicly accessible 7
repository of information and resources available to patients in 8
Washington state. 9
(2) Beginning December 1, 2026, and every biennium thereafter, 10
and in accordance with RCW 43.01.036, the council shall submit a 11
report to the governor and the legislature detailing the work of the 12
council from the preceding biennium, identifying opportunities to 13
support programs that directly impact the lives of patients with rare 14
diseases, and providing any recommendations for statutory changes to 15
the structure and duties of the council. 16
(3) The council shall serve in an advisory role only and may not 17
supersede the authority of local health jurisdictions when responding 18
to an outbreak of a communicable rare disease. 19
(4) For purposes of this section, "rare disease" means a disease 20
that affects fewer than 200,000 people in the United States.21
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