BILL ANALYSIS Ó
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THIRD READING
Bill No: AB 2034
Author: Fuentes (D), et al.
Amended: 8/21/12 in Senate
Vote: 21
SENATE HEALTH COMMITTEE : 9-0, 6/20/12
AYES: Hernandez, Harman, Alquist, Anderson, Blakeslee, De
León, DeSaulnier, Rubio, Wolk
SENATE APPROPRIATIONS COMMITTEE : 7-0, 8/16/12
AYES: Kehoe, Walters, Alquist, Dutton, Lieu, Price,
Steinberg
ASSEMBLY FLOOR : 76-0, 5/30/12 - See last page for vote
SUBJECT : Medical care: genetically handicapping
conditions
SOURCE : California ALS Advocacy Committee
DIGEST : This bill 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 the full implementation of the
federal Affordable Care Act (ACA). This bill also requires
the report to address adding genetic Amyotrophic Lateral
Sclerosis (ALS) to the conditions covered by the program.
ANALYSIS :
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Existing law:
1. Requires the Director of DHCS (Director) to establish
and administer a program for the medical care of persons
with genetically handicapping conditions, including
cystic fibrosis, hemophilia, sickle cell disease,
Huntington's disease, Friedreich's Ataxia, Joseph's
disease, Von Hippel-Landau syndrome, and specified
hereditary metabolic disorders. This program is known
as GHPP.
2. Defines "genetically handicapping condition" to mean a
disease that is accepted as being genetic in origin by
the American Society of Human Genetics.
3. Requires the GHPP to include any or all of specified
medical and social support services.
4. Requires the Director to appoint an 11-member Advisory
Committee on GHPP composed of professional and consumer
representatives who serve without compensation and at
the discretion of the Director. Permits the Director,
with the guidance of the Advisory Committee on GHPP, to
expand the list of genetically handicapping conditions
covered under GHPP by regulation. Requires the Director
to adopt regulations that are necessary for the
implementation of the GHPP statutory provisions.
5. Establishes the federal Medicare program, which provides
hospitals services (through Part A) and physician
services (through Part B) for seniors and disabled
individuals who have been receiving 24 months of
disability payments. The 24-month Medicare waiting
period for disabled persons is waived for individuals
medically determined to have ALS.
This bill requires the State DHCS to prepare a report on
the coverage needs of the population served by the GHPP
after the implementation of the ACA. This bill requires
the report to address, among other things, preservation of
the availability of wrap-around services that would
otherwise not be available through the ACA and the extent
to which a person with genetic amyotrophic lateral
sclerosis will continue to have unmet medical needs after
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implementation of the ACA. This bill requires the DHCS to
submit the report to the relevant fiscal and policy
committees of the Legislature by January 1, 2015.
Background
ALS . According to the United States National Library of
Medicine, ALS is a disease of the nerve cells in the brain
and spinal cord that control voluntary muscle movement.
ALS is also known as Lou Gehrig's disease. A 1995 review of
the rate of familial ALS among prospective population-based
registries is 5.1%. In the remaining cases, the cause is
unknown.
With ALS, nerve cells (neurons) waste away or die and can
no longer send messages to muscles. This eventually leads
to muscle weakening, twitching, and an inability to move
the arms, legs, and body. The condition slowly gets worse.
When the muscles in the chest area stop working, it
becomes hard or impossible to breathe on one's own. ALS
affects approximately five out of every 100,000 people
worldwide. There are no known risk factors except for
having a family member who has a hereditary form of the
disease. Symptoms usually do not develop until after age
50, but they can start in younger people. Persons with ALS
experience loss of muscle strength and coordination that
eventually gets worse and makes it impossible to do routine
tasks such as going up steps, getting out of a chair, or
swallowing. Breathing or swallowing muscles may be the
first muscles affected. As the disease gets worse, more
muscle groups develop problems. ALS does not affect the
senses (sight, smell, taste, hearing, touch), and it only
rarely affects bladder or bowel function, or a person's
ability to think or reason. Over time, people with ALS
progressively lose the ability to function and care for
themselves, and death often occurs within three to five
years of diagnosis.
GHPP . GHPP was established in 1975 to provide medical care
for California residents with specific genetically
handicapping conditions. Hemophilia was the first medical
condition covered by the GHPP, and legislation throughout
the years has added other medical conditions, such as
cystic fibrosis, sickle cell disease, phenylketonuria, and
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Huntington's disease. The last genetic condition added to
the GHPP was Von Hippel-Lindau Disease.
GHPP provides individuals enrolled in the program with
enhanced services through Special Care Center services,
centralized program administration, case management
services, and coordination of treatment services with
managed care plans. DHCS administers application and
enrollment, eligibility determination, medical eligibility,
residential eligibility, financial eligibility, age
criteria, case management, authorization of services,
claims processing, and appeal review. There is no income
limit for GHPP eligibility, but some enrollees may be
required to pay an annual enrollment fee to GHPP based on
income and family size (1.5% of income for individuals with
adjusted gross incomes between 200 and 299% of the federal
poverty level (FPL) and 3% of income for individuals with
adjusted gross incomes at or above 300% of FPL). In
addition, applicants may be required to apply for Medi-Cal.
Individuals must reapply to GHPP each year to continue in
the program. GHPP is also the "payer of last resort" which
means that an enrollee's health insurance must be billed
first before GHPP, and GHPP does not pay for co-payments,
insurance premiums or Medi-Cal share of cost.
Total expenditures proposed for GHPP in the Governor's
2012-13 May Budget Revision are $99.7 million ($68.2
million General Fund, $23.1 million federal funds, $8
million Rebate Fund, and $452,400 Enrollment Fees). This
includes a $2.4 million General Fund increase from the
budget proposal released in January of 2012. Total GHPP
projected enrollment is 858 people.
ALS, Medicare and Social Security Disability Insurance
(SSDI) benefits . To qualify for SSDI, an individual must
have a disabling condition that prevents employment and is
expected to last at least 12 months. People with ALS who
are under age 65 and have paid a qualifying amount into the
Social Security system are granted "presumptive" or
automatic eligibility for SSDI benefits, meaning they
should need nothing more than a doctor's statement of
diagnosis to prove qualification. SSDI recipients with ALS
can begin receiving Medicare Part A (with Part B optional)
as soon as they get SSDI. Medicare Part A covers hospital,
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hospice and some health facility care, and Part B covers
physician services and requires a monthly premium payment
by the individual.
FISCAL EFFECT : Appropriation: No Fiscal Com.: Yes
Local: No
Unknown with the latest amendment.
SUPPORT : (Verified 6/20/12)(per Senate Health Committee
analysis - per prior version of the bill)
California ALS Advocacy Committee (source)
California Medical Association
ARGUMENTS IN SUPPORT : This bill is sponsored by the
California ALS Advocacy Committee (CAAC) and directs DHCS
to provide a report for GHPP after the implementation of
the ACA. CAAC states this bill also requires DHCS to
include in the report, the addition of the genetic form of
ALS. CAAC states the implementation of the ACA is fast
approaching in January 2014, and it is still not known how
state-run medical programs such as GHPP will be affected.
CAAC states that, as much as GHPP currently provides
important services for specified genetic conditions, this
bill seeks to preserve the types of services and model of
care currently provided in the program, specifically the
specialty care center model, in the context of the ACA.
ASSEMBLY FLOOR : 76-0, 5/30/12
AYES: Achadjian, Alejo, Allen, Ammiano, Atkins, Beall,
Bill Berryhill, Block, Blumenfield, Bonilla, Bradford,
Brownley, Buchanan, Butler, Charles Calderon, Campos,
Carter, Cedillo, Chesbro, Conway, Cook, Davis, Dickinson,
Eng, Feuer, Fong, Fuentes, Furutani, Beth Gaines,
Galgiani, Garrick, Gatto, Gordon, Grove, Hagman,
Halderman, Hall, Harkey, Hayashi, Roger Hernández, Hill,
Huber, Hueso, Huffman, Jeffries, Jones, Knight, Lara,
Logue, Bonnie Lowenthal, Ma, Mansoor, Mendoza, Miller,
Mitchell, Monning, Morrell, Nestande, Nielsen, Norby,
Olsen, Pan, Perea, V. Manuel Pérez, Portantino, Silva,
Skinner, Smyth, Solorio, Swanson, Torres, Wagner,
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Wieckowski, Williams, Yamada, John A. Pérez
NO VOTE RECORDED: Donnelly, Fletcher, Gorell, Valadao
CTW/DLW:k 8/21/12 Senate Floor Analyses
SUPPORT/OPPOSITION: SEE ABOVE
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