BILL ANALYSIS Ó
AB 2034
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CONCURRENCE IN SENATE AMENDMENTS
AB 2034 (Fuentes)
As Amended 21, 2012
Majority vote
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|ASSEMBLY: |76-0 |(May 30, 2012) |SENATE: |38-0 |(August 23, |
| | | | | |2012) |
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Original Committee Reference: HEALTH
SUMMARY : Requires the Department of Health Care Services (DHCS)
to prepare a report on the coverage needs of the population
served by the Genetically Handicapped Persons Program (GHPP)
after implementation of the federal Patient Protection and
Affordable Care Act (Public Law 111-148) (ACA). Specifies
issues to be addressed in the report including the extent to
which persons with genetic Amyotrophic Lateral Sclerosis (ALS)
will continue to have unmet medical needs.
The Senate amendments :
1)Require the DHCS to prepare a "report" in place of the
requirement to develop a plan and delete the requirement that
it be in consultation with the California Health Benefits
Exchange (Exchange).
2)Specify that the report is on the coverage needs of the
population served by the GHPP and shall be submitted to the
Legislature by January 1, 2015.
3)Delete the requirement that adding genetic ALS as a
GHPP-eligible condition be addressed and instead requires the
report to address the extent to which a person with genetic
ALS will continue to have unmet needs.
4)Add a January 1, 2019 sunset date.
AS PASSED BY THE ASSEMBLY , this bill required DHCS, in
consultation with the Exchange, to develop a plan for the GHPP
after implementation of the ACA that addresses adding genetic
ALS to the list of GHPP -covered conditions.
FISCAL EFFECT : According to the Senate Appropriations
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Committee, this bill would:
1)Cost between $50,000 and $100,000 (General Fund (GF) to
develop the plan.
2)Create cost pressure to continue operating GHPP, likely from
$70 million to $100 million per year (70% GF). Under current
law, GHPP is the payer of last resort for participants that
have other health care coverage, such as private insurance,
Medi-Cal, or Medicare. About 40% of current program
participants have no other coverage, in which case the program
provides general health care coverage (with cost sharing).
Under the ACA, an unknown portion of the program population
will likely gain other health care coverage, reducing the
program's need to pay for basic health care costs.
3)Likely annual costs to provide services to ALS patients of
about $5 million per year (70% GF). Based on current program
expenditures and cost sharing with other health care programs,
the average annual cost to provide services to newly eligible
participants will be about $65,000 per year, with an estimated
annual population of 75 new program participants.
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. 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, a majority of patients with adult-onset ALS, (90%)
have no family history of ALS and present as an 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
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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.
Analysis Prepared by : Marjorie Swartz / HEALTH / (916)
319-2097
FN: 0005375