BILL NUMBER: SB 513 INTRODUCED
BILL TEXT
INTRODUCED BY Senator Steinberg
FEBRUARY 26, 2009
An act to amend Section 104323 of, and to add Sections 104323.1,
104323.2, and 104323.3 to, the Health and Safety Code, relating to
public health.
LEGISLATIVE COUNSEL'S DIGEST
SB 513, as introduced, Steinberg. Amyotrophic lateral sclerosis.
Existing law provides for programs administered by the State
Department of Public Health for the prevention and treatment of
various diseases. Existing law establishes the ALS/Lou Gehrig's
Disease Research Fund and provides for the deposit of voluntary
taxpayer contributions to be used by the department to provide
research grants to develop and advance the understanding, techniques,
and modalities effective in the prevention, treatment, and cure of
ALS.
This bill would request that the Regents of the University of
California establish and administer the California ALS Disease Team
with the goal of promoting and conducting scientific research on ALS
and developing effective treatments and diagnostics.
This bill would require the Secretary of California Health and
Human Services to be responsible for oversight and coordination of
programs serving people with ALS and their families, would require
the secretary to establish an ALS Advisory Committee, and would set
forth the membership and duties of the committee.
Vote: majority. Appropriation: no. Fiscal committee: yes.
State-mandated local program: no.
THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:
SECTION 1. The Legislature finds and declares all of the
following:
(a) The State of California supports the expansion of scientific
research on amyotrophic lateral sclerosis (ALS), commonly known as
Lou Gehrig's Disease, and seeks to understand the impact ALS has on
veterans, health, and social services.
(b) To better serve ALS patients, it is necessary to build upon
existing research and to develop research-based information to guide
effective medical and social service interventions for this patient
population and to inform state policymakers regarding health, social,
and veterans programs available to these patients.
(c) An urgency exists in discovering new treatments and a
potential cure for ALS, as it is a fatal, degenerative, neurological
disease, which, on average, takes the life of patients two to five
years after diagnosis. It has been over 150 years since the
scientific community recognized ALS. Since then, only one
pharmaceutical treatment has become available. The benefit of this
treatment is limited, as it only works for some patients and, at
best, offers only a few additional months of life.
(d) The State of California seeks to help address the staggering
need for research by establishing the California ALS Disease Team.
The team-based approach encourages early consultation and cooperation
among researchers of diverse skills and expertise. This approach has
the potential to advance therapies into the clinic more rapidly,
therefore helping address the urgency of the needs of ALS patients.
SEC. 2. Section 104323 of the Health and Safety Code is amended to
read:
104323. The (a) For
the purposes of this chapter "ALS" or "Lou Gehrig's disease" means
Amyotrophic Lateral Sclerosis.
(b) The Legislature finds and
declares all of the following:
(a)
(1) Amyotrophic Lateral Sclerosis (ALS), more commonly
known as Lou Gehrig's disease, is a degenerative disease of the motor
nerves that causes progressive weakness of all voluntary muscles.
People with ALS become unable to move, swallow, speak, and breathe
without assistance, usually remaining fully aware of what is
happening to them and to their families.
(b)
(2) ALS is a fatal disease. Most ALS patients die within
two to five years of symptom onset. Every 90 minutes someone is
diagnosed with ALS and every 90 minutes someone dies of the disease.
ALS knows no racial, ethnic, or socioeconomic boundaries, often
striking people at midlife and at the height of family and financial
responsibilities.
(c)
(3) The devastating physical, emotional, and financial
effects caused by the progression of ALS and the 24 hour a day, seven
day a week caregiving required impacts not only the patient, but the
entire family. ALS is a family disease.
(d)
(4) For many patients, the one drug approved by the
federal Food and Drug Administration for the treatment of ALS shows
little, if any, efficacy in slowing the progression of the disease.
As a result, the focus of intervention for ALS patients is managing
the effects of the disease progression. Research has shown that
aggressive multidisciplinary care, provided within a collaborative
environment, can extend a patient's life, reduce hospital admissions,
and improve the quality of life for the patient and family.
Ultimately, though, more research is needed to find an effective
treatment and cure for ALS.
(e)
(5) To significantly extend and improve the quality of
life of people living with ALS, the state recognizes the need for the
California System of Care for ALS Patients model based upon the
principles described in subdivision (f).
(f)
(6) According to the American Academy of Neurology
(AAN), the mainstay of treatment for ALS patients is symptom
management. As a result, the AAN has established a practice parameter
for the care of ALS patients. These guidelines establish a
foundation on which to develop a system of care that enables the
delivery of a comprehensive array of services critical to the care of
ALS patients and their families. The AAN sets this foundation in
their four principles of ALS management summarized as follows:
(1)
(A) High priority should be placed on patient
self-determination and the delivery of both information and care must
take into consideration the cultural and psychosocial context of the
patient and family.
(2)
(B) Patients and families need information that is
timed appropriately for decisionmaking.
(3)
(C) The physician, in conjunction with other health
care professionals, should address the full continuum of care for the
patient with ALS.
(4)
(D) Discussions regarding advance directives should be
introduced and periodically reevaluated to ensure that ALS patients
and their families understand the issues to be faced in the terminal
phase of the disease.
(g)
(7) The services described in subdivision (f)
(g) , when delivered through a highly
coordinated effort, form a model program designed to provide the
highest level of care available for the successful management of the
needs of ALS patients and their families.
(h)
(8) ALS Association Certified Centers (centers) are a
vehicle for state-of-the-art multidisciplinary and interdisciplinary
care and management of ALS. The centers reflect four main objectives:
(1)
(A) The involvement of all necessary health care
disciplines in the care of the ALS patient and his or her family.
(2)
(B) The offering of multidisciplinary and
interdisciplinary care, regardless of the ability to pay.
(3)
(C) Collaborative work among centers to enhance ALS
patient care techniques.
(i)
(9) Centers provide a one-stop shop at which the
patient and family have access to a team of health care professionals
from every specialty area that they may need during the progression
of ALS. Each professional is an expert in ALS as well as his or her
own field. The team that assesses and treats patients during their
visits to a center includes individuals in all of the following
specialty areas:
(1)
(A) Physical therapy.
(2)
(B) Occupational therapy.
(3)
(C) Respiratory therapy.
(4)
(D) Nursing.
(5)
(E) Registered dietician services.
(6)
(F) Psychology or psychiatry.
(7)
(G) Speech and language pathology.
(8)
(H) Medical social work service.
(j)
(10) An ALS Association Certified Center is a
"specialty care center" for the purposes of Section 1374.16.
SEC. 3. Section 104323.1 is added to the Health and Safety Code,
to read:
104323.1. (a) The Legislature hereby requests that the Regents of
the University of California establish and administer the California
ALS Disease Team within the University of California.
(b) The goal of the team is to promote and conduct scientific
research on ALS and to develop effective treatments and diagnostics.
(c) The team is to be comprised of basic, translational, and
clinical scientists.
(d) The team may involve interinstitutional collaborations.
SEC. 4. Section 104323.2 is added to the Health and Safety Code,
to read:
104323.2. The Secretary of California Health and Human Services
shall be responsible for the oversight and coordination of programs
serving people diagnosed with amyotrophic lateral sclerosis (ALS) and
their families. This responsibility shall include, but need not be
limited to:
(a) State level support and assistance to all programs within the
Health and Human Services Agency and member departments developed for
this target population.
(b) Establishment of the ALS Advisory Committee.
(c) Review of the recommendations made by the ALS Advisory
Committee and subsequent state plans.
SEC. 5. Section 104323.3 is added to the Health and Safety Code,
to read:
104323.3. (a) The Secretary of California Health and Human
Services shall establish an ALS Advisory Committee consisting of 14
members selected as follows:
(1) One representative of the field of academic medical research.
(2) One representative of the field of social services.
(3) Two representatives of the field of neurological medicine.
(4) Two representatives of the ALS Centers of Excellence.
(5) Two representatives of the ALS patient population.
(6) One representative of families of persons suffering from ALS.
(7) One representative of the California ALS Disease Team.
(8) Two representatives of California ALS Association Chapters.
(9) One representative of veterans with ALS.
(10) The Secretary of California Health and Human Services or his
or her designee.
(b) Members shall serve at the pleasure of the Secretary of
California Health and Human Services. The secretary may establish
fixed terms for advisory committee membership. For purposes of
continuity, those terms shall be staggered.
(c) Members shall serve without compensation.
(d) The ALS Advisory Committee shall do all of the following:
(1) Appoint a chairperson and vice chairperson.
(2) Meet quarterly.
(3) Provide ongoing advice and assistance to the Governor and the
Legislature as to the program needs and priorities of the targeted
population.
(4) Provide planning support to the Governor and the Legislature
by providing a review of current available services, the gaps in
those services, and how the state can improve those services.
(e) The ALS Advisory Committee shall do all of the following when
making policy and plan recommendations:
(1) Consult with a broad range of stakeholders, including, but not
limited to, people diagnosed with ALS, family caregivers,
community-based and institutional providers, ALS disease researchers
and academicians, professional caregivers, the California ALS
Association Chapters, nonemergency medical transporters, the State
Department of Health Care Services, the State Department of Social
Services, the Department of Veterans Affairs, and other state
entities.
(2) Consider the difficulty that mobility and transportation play
in restricting or limiting an ALS patient's access to care.
(3) Review current state policies and practices concerning, and
treatment related to, ALS and develop recommendations.
(4) Review community-based support for ALS patients and suggest
how the state may partner with community-based organizations to
improve patient care.
(5) Review ALS case management practices and develop a model that
can be disseminated to state agencies and community-based groups.
(6) Develop a mechanism to inform ALS disease advocacy groups
about state programs and services available to their patient
populations.
(7) Create a clearinghouse of information on research findings.
(8) Provide the Legislature with a report containing a review of
state policies and procedures concerning the care, treatment, and
services for ALS patients and offer specified recommendations
relating to the improvement of care for those patients in the state.
(f) All meetings of the advisory committee, and any of its
subcommittees, shall be open to the public and adequate notice shall
be provided in accordance with Article 9 (commencing with Section
11120) of Chapter 1 of Part 1 of Division 3 of Title 2 of the
Government Code.