BILL ANALYSIS Ó
AB 2034
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Date of Hearing: April 18, 2012
ASSEMBLY COMMITTEE ON APPROPRIATIONS
Felipe Fuentes, Chair
AB 2034 (Fuentes) - As Amended: March 29, 2012
Policy Committee: HealthVote:17-2
Urgency: No State Mandated Local Program:
No Reimbursable: No
SUMMARY
This bill requires the Department of Health Care Services
(DHCS), in consultation with stakeholders, 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). Specifically, this
bill requires the plan to address:
1)Preserving the availability of wrap-around services that will
not otherwise be available after implementation of the ACA.
2)Continued coverage for any residual services and populations.
3)Adding genetic Amyotrophic Lateral Sclerosis (ALS) to the list
of GHPP-eligible conditions. This bill also requires care and
treatment for ALS under GHPP to be consistent with
patient-centered principles of care in current law.
FISCAL EFFECT
1)Costs to DHCS of at least $50,000 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, currently a $104 million ($63 million GF) program
that provides comprehensive health care coverage for persons
with specified genetic diseases.
3)This bill requires a plan that addresses adding ALS as a
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GHPP-eligible condition. If genetic ALS were added to the
list of GHPP-eligible conditions, GF costs for services would
be about $700,000 annually, assuming about 70 new individuals
with ALS would enroll in the program. Mandatory enrollment
fees assessed for some enrollees under current law would
offset a small percentage of the GF cost. Most individuals
with ALS are automatically Medicare-eligible, so this estimate
assumes GHPP would cover only services not covered by
Medicare. In addition, DHCS would incur minor one-time
administrative costs to develop ALS-specific GHPP program
standards, as well as costs in the range of $50,000 GF
annually to oversee these standards.
10% of ALS cases are currently thought to be genetically
linked. As research on ALS progresses, it is possible that a
larger percentage of ALS cases will be found to have a genetic
link, which would increase costs commensurately if genetic ALS
were a GHPP-eligible condition.
COMMENTS
1)Rationale . Because GHPP currently provides specialized
wrap-around care not covered by other payers, the author
indicates that as GHPP evolves in response to a changing
health care marketplace, it makes sense to require a plan that
addresses preserving GHPP and adding coverage for genetically
linked ALS. The author indicates that genetically linked ALS
cases account for about 10% of all ALS cases. The GHPP program
provides care through approved Special Care Centers, highly
specialized entities that provide multidisciplinary team-based
care specific to certain diseases, many of which are covered
by GHPP. The author contends that providing care and
treatment through GHPP would help extend the ALS patient's
life, reduce hospital admissions, and improve the quality of
life for the patient and family. Although these centers
currently provide treatment for ALS, they cannot seek
reimbursement from GHPP for these services, since ALS is not
included on the list of GHPP-eligible conditions. This bill
is sponsored by the California ALS Advocacy Committee (CAAC),
which consists of the four ALS Association Chapters in
California.
2)ALS is a degenerative, ultimately fatal neurological disease
that results in a gradual loss of control of voluntary muscle
movement. ALS first affects extremities and/or throat and
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mouth muscles but eventually affects all voluntary muscles,
resulting in paralysis. It most commonly occurs in middle
age. Aside from known hereditary risk factors (up to 10 % of
the people who have ALS inherited it from their parents), the
causes of ALS are unknown at this time. On average, patients
die within two to five years from the time of diagnosis.
There is no known prevention, no diagnostic test, no long-term
treatment, and no known cure. It is estimated that 30,000
Americans have the disease at any given time.
Establishing a genetic basis for ALS without a family history
is difficult. There is no difference in disease presentation
between the 10% of ALS patients thought to have a genetically
linked form of the disease, and the 90% with no known genetic
link. Among those 10%, the causative genetic mutation for
genetically linked ALS can sometimes be identified, but not in
all cases.
3)Medical benefits are available to most individuals with ALS
through Medicare, though certain specialized services in a
multi-disciplinary team setting may not be widely available to
all ALS patients. Because ALS progresses so quickly, a
special exception is granted to the normal 24-month waiting
period for federal Social Security Disability Income (SSDI)
and Medicare benefits and individuals are granted presumptive
eligibility for both. Cost-sharing for Medicare benefits may
be significant, particularly in the last year of life when
many ALS patients are ventilator-dependent and require
intensive care and monitoring. Applicants for Medi-Cal who
have ALS and meet income, asset, and citizenship rules are
immediately eligible to receive full-scope Medi-Cal coverage,
also based on a presumptive disability determination.
4)GHPP is a mostly state-funded program that provides
comprehensive health care coverage for persons with specified
genetic diseases, the majority of whom have hemophilia, cystic
fibrosis, or sickle cell anemia. The program was established
in 1975 for coverage of hemophilia, and legislation throughout
the years has added other conditions (the last condition was
added in 1991). Care for GHPP clients is coordinated through
GHPP Special Care Centers that must comply with program
standards established by DHCS.
GHPP is the payer of last resort for health care services, and
will only reimburse for approved services that are beyond the
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scope of an individual's other sources of coverage. Given that
most individuals with ALS have access to medical coverage
through Medicare and/or Medi-Cal, if genetic ALS were added to
GHPP, GHPP would only cover certain limited services such as
annual outpatient Special Care Center assessments and
evaluation, and case management. Individuals with ALS who do
not qualify for Medicare or Medi-Cal would receive a more
comprehensive set of benefits through GHPP. Current projected
expenditures for GHPP in 2012-13 are $104 million, of which
$63 million is GF. Most spending is associated with
hemophilia.
The federal ACA is projected to increase access to
comprehensive health care coverage by providing subsidies to
buy coverage, expanding Medicaid, and reforming the insurance
market. However, some specialty care services and wraparound
services covered by GHPP will likely still be excluded from
coverage requirements under the ACA.
5)Previous Legislation .
a. SB 1503 (Steinberg), Chapter 409, Statutes of 2008
defined an ALS Association Certified Center as a "specialty
care center" to which a health care service plan must have
a procedure for referring enrollees who have certain
serious or degenerative conditions requiring specialized
medical care over a prolonged period.
b. AB 5 X4 (Evans), Chapter 5, Fourth Extraordinary
Session, Statutes of 2009, the health budget trailer bill,
increased enrollment fees for GHPP and authorized the GHPP
to provide care by subsidizing premiums for other health
coverage in lieu of GHPP.
Analysis Prepared by : Lisa Murawski / APPR. / (916) 319-2081