2009 California Health and Safety Code - Section 104323 :: Chapter 7.5. Amyotrophic Lateral Sclerosis (als)

104323.  The Legislature finds and declares all of the following:
   (a) 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) 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) 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) 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) 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) 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) 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) Patients and families need information that is timed
appropriately for decisionmaking.
   (3) The physician, in conjunction with other health care
professionals, should address the full continuum of care for the
patient with ALS.
   (4) 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) The services described in subdivision (f), 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) 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) The involvement of all necessary health care disciplines in
the care of the ALS patient and his or her family.
   (2) The offering of multidisciplinary and interdisciplinary care,
regardless of the ability to pay.
   (3) Collaborative work among centers to enhance ALS patient care
techniques.
   (i) 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) Physical therapy.
   (2) Occupational therapy.
   (3) Respiratory therapy.
   (4) Nursing.
   (5) Registered dietician services.
   (6) Psychology or psychiatry.
   (7) Speech and language pathology.
   (8) Medical social work service.
   (j) An ALS Association Certified Center is a "specialty care
center" for the purposes of Section 1374.16.