BILL ANALYSIS Ó
AB 2034
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ASSEMBLY THIRD READING
AB 2034 (Fuentes)
As Amended May 25, 2012
Majority vote
HEALTH 17-0 APPROPRIATIONS 17-0
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|Ayes:|Monning, Logue, Ammiano, |Ayes:|Fuentes, Harkey, |
| |Atkins, Bonilla, Eng, | |Blumenfield, Bradford, |
| |Gordon, Hayashi, Roger | |Charles Calderon, Campos, |
| |Hernández, Bonnie | |Davis, Donnelly, Gatto, |
| |Lowenthal, Mansoor, | |Ammiano, Hill, Lara, |
| |Mitchell, Nestande, Pan, | |Mitchell, Nielsen, Norby, |
| |V. Manuel Pérez, Silva, | |Solorio, Wagner |
| |Williams | | |
| | | | |
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SUMMARY : Requires the Department of Health Care Services
(DHCS), in consultation with the California Health Benefits
Exchange, to develop a plan for the Genetically Handicapped
Person's Program (GHPP) after implementation of the federal
Patient Protection and Affordable Care Act (ACA). Specifically,
this bill :
1)Requires DHCS to develop the plan in consultation with the
GHPP Advisory Committee or an alternative group of
stakeholders.
2)Requires the plan to address the following:
a) Preserving the availability of services that are
currently available under the GHPP program, but may not
continue to be otherwise available;
b) Continued coverage to populations that are not covered
by the ACA; and,
c) Adding genetic amyotrophic lateral sclerosis (ALS) to
the GHPP list of conditions. Requires the care and
treatment of ALS to be consistent with existing legislative
intent and findings including the designation of an ALS
Association Certified Center as a "Specialty Care Center"
for specified purposes.
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3)Requires the plan in 2) above to be submitted to the relevant
fiscal and policy committees by July 1, 2013.
FISCAL EFFECT : According to the Assembly Appropriations
Committee:
1)Costs to DHCS of at least $50,000 (50% General Fund (GF), 50%
federal funds) to conduct a stakeholder process and develop a
plan addressing the specified requirements.
2)By implying reduced administrative and legislative flexibility
to modify the program in light of the ACA, this bill creates
continuing GF cost pressure on the state to continue and
expand GHPP.
COMMENTS : According to the author, the purpose of this bill is
to provide access to aggressive multidisciplinary care for ALS
patients through a multi-disciplinary medical facility such as
the ALS Centers of Excellence. The author argues that this care
would help extend the patient's life, reduce hospital admissions
and improve the quality of life for the patient and family.
According to the author, the progression of the disease involves
a patient gradually losing the ability to use their voluntary
muscles. They cannot move or communicate; although their mental
facilities are completely intact and they are aware of
everything, but unable to communicate in any way. 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. According to the
author, services like nursing home health visits are especially
necessary for ALS patients in a later stage of the disease, who
are ultimately unable to go to the Specialty Care Centers. This
bill would assist those patients who forego treatment because
they lack financial resources to seek medical help. According
to the Muscular Dystrophy Association, without assistive
technologies such as mechanical ventilation and feeding tubes,
the average life expectancy is three to five years after an ALS
diagnosis and about 4-10% live more than 10 years. According to
the ALS Association, the majority of patients with adult-onset
ALS, (90%) have no family history of ALS and present as an
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isolated case. ALS is directly hereditary in only a small
percentage of families. Objective identification by genetic
mutation is not well enough developed to be determinative of the
distinction between the two types of ALS and currently family
history is the best tool for diagnosis.
GHPP, established in 1975, provides comprehensive health care
coverage for persons with specified genetic diseases including
cystic fibrosis; hemophilia; sickle cell disease and
thelassemia; chronic degenerative neurologic diseases including
Huntington's Disease, Friedrieich's Ataxia, and Joseph's
Disease; and metabolic diseases including phenylketonuria. GHPP
also provides access to social support services that may help
ameliorate the physical and psychological problems attendant to
genetically handicapping conditions.
GHPP clients with other health coverage, such as private
insurance may apply for GHPP benefits; however GHPP will only
cover limited services. These include an annual outpatient
Special Care Center assessment, evaluation and case conference
and services not covered by the health plan. Clients with
Medicare may also apply, however the Medicare Part A (hospital
care) or Part B (medical services) must be billed first and
prior authorization must be obtained from the GHPP. Clients
with Medi-Cal may apply for GHPP benefits. Medi-Cal clients,
including those enrolled in a Medi-Cal Managed Care plan, will
receive the same services they are receiving from Medi-Cal in
addition to the services available through the GHPP. An example
of an additional service is Special Care Center services. Once
the Medi-Cal clients are enrolled into this program, GHPP will
case manage their case. Clients who are eligible for Medi-Cal
and Medicare (dual eligibles) must enroll in Medicare Part D for
drug coverage. For clients who are Medicare only, Part D
enrollment is optional, however once enrolled clients are only
eligible for medications specifically excluded from coverage by
Medicare Part D.
The Governor's May revision to the proposed fiscal year 2012-13
budget proposes to eliminate the GHPP Advisory Committee.
Analysis Prepared by : Marjorie Swartz / HEALTH / (916)
319-2097
FN: 0003950
AB 2034
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