On Wednesday, May 15th about 125 advocates from
the Alzheimer’s Association, UC Davis Alzheimer’s
Disease Center and related organizations met with more than
60 legislators during scheduled visits at the State Capitol
to show support for several proposed bills. The day began with
a press conference to publicly announce the Alzheimer’s
Association’s platform, their strategy for the day and
a legislative update from Senator Romero.
After briefing and breakfast, all moved to the
State Senate Hearing on Alzheimer’s Disease presided over
by Senator Romero. Several were chosen to address the concerns
of caregivers and researchers to the senator. Actor David Hyde
Pierce from “Frasier”, who has had family members
diagnosed with AD, is a dedicated advocate who has taken up
the torch of advocacy from the late Maureen Reagan. His delivery
was insightful and moving. Several caregivers spoke about their
struggles to obtain needed Medicare reimbursements for medications
and other costs associated with caring for AD diagnosed family
members. The Senator heard from a person with the early stages
of the disease pleading for changes in the law so that he would
not be a burden to his family. Prominent Alzheimer’s Researchers
including, Department of Health Services Dr. Donald O. Lyman
and neurologist William J. Jagust of the UC Davis Alzheimer’s
Disease Center reviewed many of the recent findings and current
projects that occupy investigators.
After lunch volunteers went in groups and visited legislators,
all key committees members, e.g. health and budget, and a select
few had private meetings with Senate Minority Leader Jim Brulte
and Governor Gray and First Lady Sharon Davis. These visits
were extremely important and among other things raised awareness
for the following bills:
Senate Joint Resolution 37 (Romero) Urges our federal officials
to pledge 1 billion dollars specifically for Alzheimer’s
disease research and clinical trials. Status: Passed Senate;
Pending on Assembly floor.
Senate Bill 1426 (Romero) To provide Medi-Cal beneficiaries
with equal and immediate access to future Alzheimer’s medications
that are approved by the federal Food & Drug administration.
Assembly Bill 2328 (Wayne) Current California law is very unclear
about how to obtain informed consent for research with people
with dementia. This is a potentially serious problem that could
stop people with Alzheimer’s disease from taking part in
research. This bill is aims to fix the problem by allowing close
relatives to consent for the patient (as is now true in Federal
law). AB2328 regarding surrogate consent passed on the floor
of the Assembly.
Alzheimer’s Health Education Initiative: During the 2002-2003
Legislative Session, the Assembly, Senate and Administration
must support continued funding for the Alzheimer’s Disease
Health Education Initiative (ADHEI). Educate California’s
Medical community on the best practices in Alzheimer’s
disease management and inform and empower CA consumers (patients
and family caregivers) to understand, expect and access quality
dementia care. One-time funding for the ADHEI will expire in
state fiscal year 2003-2004.
What you can do to help
These two organization’s web sites have valuable information
on what you can do to help make sure the needs of Alzheimer’s
patients, caregivers, and researchers doesn’t get lost
in the bureaucracy: www.alz.org/involved/advocacy
&
www.caalz.org/. You can get the
vote details and text amendments on the web at http://www.leginfo.ca.gov/bilinfo.html
