BILL ANALYSIS Ó
SENATE COMMITTEE ON HEALTH
Senator Ed Hernandez, O.D., Chair
BILL NO: AB 2034
AUTHOR: Fuentes
AMENDED: June 15, 2012
HEARING DATE: June 20, 2012
CONSULTANT: Bain
SUBJECT : Medical care: genetically handicapping conditions.
SUMMARY : Requires the Department of Health Care Services (DHCS)
to develop a plan for the continued operation of the Genetically
Handicapped Person's Program (GHPP) after implementation of the
federal Patient Protection and Affordable Care Act (ACA).
Requires the plan to address preserving the availability of
wrap-around services that will not otherwise be available after
implementation of the ACA and adding genetic amyotrophic lateral
sclerosis (ALS) to the list of GHPP-covered conditions.
Existing law:
1.Requires the Director of DHCS 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 of DHCS, 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.
Continued---
AB 2034 | Page 2
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:
1.Requires DHCS, in consultation with the California Health
Benefit Exchange (Exchange), to develop a plan for the
continued operation of GHPP after implementation of the ACA.
2.Requires the plan to address all of the following:
a. Wrap-around services that will not be available in the
absence of GHPP after implementation of the ACA.
b. Continued coverage for any residual services and
populations.
c. Adding genetic ALS to the GHPP list of conditions, or
any subsequent care model developed after implementation of
the ACA.
3.Requires care and treatment provided for genetic ALS under
GHPP to be consistent with the specified principles regarding
ALS care.
4.Permits DHCS, in developing the plan, to consult with
stakeholders, representatives of GHPP providers, individuals
with genetically handicapped conditions, special care centers,
genetic disease medical experts, and other interested persons.
5.Requires the plan to be submitted to the relevant legislative
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 percent General Fund
ÝGF], 50 percent 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.
AB 2034 | Page
3
PRIOR VOTES :
Assembly Health: 17- 0
Assembly Appropriations:17- 0
Assembly Floor: 76- 0
COMMENTS :
1.Author's statement. AB 2034 not only ensures the continued
coverage of wrap-around services for all patients currently
eligible for GHPP after ACA implementation, but also seeks to
extend this type of aggressive multidisciplinary care to
individuals with genetic ALS. It is clear that GHPP services would
help extend an ALS patient's life, reduce hospital admissions and
improve the quality of life for the patient and family.
2.ALS. According to the U.S. 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 percent. 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 5 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.
3.GHPP. GHPP was established in 1975 to provide medical care for
California residents with specific genetically handicapping
AB 2034 | Page 4
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 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
percent of income for individuals with adjusted gross incomes
between 200 and 299 percent of the federal poverty level (FPL) and
3 percent of income for individuals with adjusted gross incomes at
or above 300 percent 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 GF, $23.1 million
federal funds, $8 million Rebate Fund, and $452,400 Enrollment
Fees). This includes a $2.4 million GF increase from the budget
proposal released in January of 2012. Total GHPP projected
enrollment is 858 people.
4.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, hospice and some
health facility care, and Part B covers physician services and
requires a monthly premium payment by the individual.
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5.Support. This bill is sponsored by the California ALS Advocacy
Committee (CAAC) and directs DHCS to develop a plan for GHPP after
the implementation of the ACA. CAAC states this bill also requires
DHCS to include in the plan, 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, inasmuch
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.
6.Related legislation. AB 1467 (Committee on Budget), the health
budget trailer bill for this year, repeals the Advisory Committee
on GHPP and eliminates the ability of DHCS to expand the list of
conditions covered through GHPP through the adoption of a
regulation. AB 1467 passed the Senate and the Assembly on June 15,
2012.
7.Prior legislation. AB 5 X4 (Evans), Chapter 5, Statutes of 2009,
the health budget trailer bill, limits the eligibility of
individuals with GHPP-eligible conditions for a period of up to
six months if they were terminated from employer-sponsored health
insurance unless certain conditions occur, redrafted the
enrollment fee to be 1.5 percent of total gross income for
families with incomes from 200 to 300 percent of FPL, and up to 3
percent for families with incomes greater than 300 percent of FPL,
and authorizes payment of premiums for other health coverage in
lieu of GHPP.
SB 1503 (Steinberg), Chapter 409, Statutes of 2008 defines an ALS
Center of Excellence as a "specialty care center" to which a
health care service plan must have a procedure for referring
enrollees who have certain serious conditions requiring
specialized medical care over a prolonged period.
8.ACA, existing state health programs, and required plan. The ACA
extends Medicaid coverage to individuals without minor children
with incomes up to 138 percent of the FPL, provides premium and
cost-sharing subsidies to individuals with incomes below specified
levels who purchase coverage in the Exchange as a way to improve
the affordability of coverage and ability to access care, requires
individuals to have coverage (known as the individual mandate),
and generally prohibits health plans from denying coverage based
on an individual's health status (known as "guarantee issue").
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A number of individuals with health coverage through state programs,
such as GHPP, the Major Risk Medical Insurance Program (which
provides coverage to individuals denied private coverage), the
Family Planning Access and Treatment Program (Family PACT provides
family planning services to individuals with incomes less than 200
percent of the FPL), and the AIDS Drug Assistance Program (which
provides medication for individuals with HIV or AIDS), will now be
eligible for Medi-Cal, subsidized individual coverage through the
Exchange, or guarantee issue individual coverage without
subsidies. However, these programs provide services or benefits
specific to particular diseases or conditions and provide health
services to individuals ineligible for coverage in the Exchange at
lower premiums and cost-sharing than these individuals may be able
to receive following the ACA. One of the significant policy and
fiscal issues for the Legislature and the Governor to consider are
what changes, if any, will be made to existing state health
coverage programs as a result of the ACA.
SUPPORT AND OPPOSITION :
Support: California ALS Advocacy Committee (sponsor)
California Medical Association
Oppose: None received.
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