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ACR-137 Cardiac Amyloidosis Recognition Day. (2019-2020)

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Corrected  August 28, 2019

CALIFORNIA LEGISLATURE— 2019–2020 REGULAR SESSION

Assembly Concurrent Resolution
No. 137


Introduced by Assembly Members Bonta, Maienschein, and Waldron

August 27, 2019


Relative to cardiac amyloidosis.


LEGISLATIVE COUNSEL'S DIGEST


ACR 137, as introduced, Bonta. Cardiac Amyloidosis Recognition Day.
This resolution would declare September 29, 2019, as Cardiac Amyloidosis Recognition Day to encourage increased awareness, early diagnosis, and access to quality care for people with cardiac amyloidosis to improve the quality of their lives, and advocate for increased support for people who have the disease and their families.
Fiscal Committee: NO  

WHEREAS, Cardiovascular disease is the leading cause of death and disability in the world, killing 17,900,000 people a year, which is one-third of all deaths on the planet and one-half of all noncommunicable disease-related deaths. Approximately 85 percent of these deaths are due to heart disease and stroke; and
WHEREAS, Amyloidosis is a group of significantly underdiagnosed rare diseases that occur when an abnormal protein called amyloid builds up in tissues and organs. Amyloidosis is a serious health problem that can lead to life-threatening organ failure; and
WHEREAS, Transthyretin Amyloid Cardiomyopathy (ATTR-CM) is a rare, underdiagnosed condition that is characterized by the buildup of amyloid in the heart, causing restrictive cardiomyopathy and progressive heart failure; and
WHEREAS, There are two types of ATTR-CM, hereditary and wild-type form. Hereditary ATTR-CM is caused by a mutation in the transthyretin gene and impacts almost exclusively the African American population, typically in adults in their mid-50s to 70s. The wild-type form most commonly affects the heart but can also cause carpal tunnel syndrome and peripheral neuropathy and primarily impacts men over 60 years of age; and
WHEREAS, Both patients and their caregivers experience the physical and emotional burden of this debilitating disease. Symptoms typically include shortness of breath, fatigue, and swelling of the legs; and
WHEREAS, Most people with cardiac amyloidosis either never receive a proper diagnosis or remain undiagnosed for many years after symptoms become severe, and are only diagnosed after seeing numerous specialists; and
WHEREAS, The average life expectancy in patients with ATTR-CM is approximately two to three and one-half years after receiving the diagnosis. Untreated, the median survival from onset of heart failure is approximately six months; and
WHEREAS, Individuals with symptoms of cardiac amyloidosis should speak with a cardiologist to learn more about the disease and find support groups and services in their communities or online that provide emotional and logistical support for themselves and their loved ones; and
WHEREAS, As with any rare disease, it is imperative that patients, caregivers, and lawmakers understand the policy issues that may impact access to care and treatments, such as step therapy, prior authorization, geographic disparities in rural versus urban areas, the cost to the health care system of incorrect diagnoses, uncertainty over Patient Protection and Affordable Care Act protections for preexisting conditions, and ensuring that proper protections are in place against discriminatory benefit design in health plans; and
WHEREAS, On September 29, 2019, which is also World Heart Day, the Legislature asks the citizens of California to help spread the word about this underrecognized disease and become informed and aware of cardiac amyloidosis and its symptoms, support efforts to educate health care providers on cardiac amyloidosis symptoms and diagnostic techniques, and ensure medical schools are focusing on cardiac amyloidosis in their curriculums; now, therefore, be it
Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature hereby proclaims September 29, 2019, as Cardiac Amyloidosis Recognition Day; and be it further
Resolved, That the Legislature encourages increased awareness, early diagnosis, and access to quality care for people with cardiac amyloidosis to improve the quality of their lives, and advocates for increased support for people who have the disease and their families; and be it further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.
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CORRECTIONS:
Text—Page 3.
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