Rep. Linda Sánchez Introduces Legislation to Improve Alzheimer's Research, Increase Support for Patients' Families
June 19, 2009
Washington, DC - Today, Rep. Linda Sánchez (D-CA) introduced the Cure and Understanding through Research for Alzheimer’s (La CURA) Act of 2009 to increase funding for the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to conduct adequate Alzheimer’s research, outreach, and education.
“Last month, I was asked to give a speech at the premiere of HBO’s documentary, The Alzheimer’s Project - not because of all the work I have done in Congress on Alzheimer’s - but sadly because my father, who suffers from the disease, is featured in the film,” said Rep. Linda Sánchez. “This legislation is near and dear to my heart because of my father and the millions of others like him who live every day with this disease. Help must be available for families of all colors and all ages whose resources are not sufficient to meet their needs. Increasing awareness, support, and outreach for those confronted with Alzheimer’s disease and for their families will help better equip our nation to face this disease.”
Every 71 seconds, someone develops Alzheimer’s disease, and by midcentury, someone will develop this disease every 33 seconds. This is important for all communities throughout the United States, but particularly for Hispanics who the Census Bureau projects, given long life spans and increasing growth within the American population, will experience a six-fold increase of Alzheimer’s cases by 2050.
The increase in Alzheimer's in the Hispanic population is particularly troubling because physicians, who diagnose and treat Alzheimer's, and caregivers, who help Alzheimer's patients get through the day, often lack Spanish language skills or sufficient knowledge of the culture to ensure that their treatment recommendations are carried out effectively.
Lack of access to health care and a strong cultural commitment to caring for one’s elders within the family are among the factors that make Hispanics with dementia less likely than non-Hispanics to see a physician and use related services provided by formal health professionals. Hispanic caregivers surveyed were significantly more likely (33 percent) than caregivers of other races (23 percent) to believe that Alzheimer’s disease is a normal part of the aging process and were also significantly more likely (67 percent) to dismiss the symptoms of Alzheimer’s disease as old age than other respondents of other races (53 percent). Delays in diagnosis and lack of early and consistent treatment can lead to higher levels of impairment and increased stress on family caregivers.
“The Alzheimer’s Foundation of America is pleased to endorse La Cura Act of 2009 and thanks Congresswoman Linda Sanchez for her leadership in helping to promote public awareness of Alzheimer's disease, especially among Hispanic populations,” said Eric J. Hall, President and CEO of the Alzheimer's Foundation of America. “Access to early diagnosis and treatment are critical for all individuals with Alzheimer’s disease and related dementias and for those of minority ethnic backgrounds in particular. Issues of stigma and mistrust as well as language and communication barriers are often magnified in the Hispanic community. Under La Cura Act, the NIH will have the necessary resources to examine ethnic health disparities that interfere with optimal quality of care. The act's emphasis on education related to risk reduction and the training of healthcare professionals to recognize and diagnose Alzheimer's disease are essential elements for disease management. By addressing key issues plaguing the Alzheimer's community, La Cura Act offers hope for families facing this heartbreaking disease."
La CURA will authorize increased funding to conduct adequate Alzheimer’s research, outreach, and education. The legislation helps expand the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) Alzheimer’s education and outreach activities in all communities, including those with cultural concerns about participation in sensitive research like the collection of brain tissue and genetic information. La CURA will address deficiencies in research participation by encouraging increased Hispanic participation in NIH clinical trials and epidemiological studies, promoting identification of culturally competent care, and addressing delays in diagnosis and underutilization of services by Hispanic patients.
“Last month, I was asked to give a speech at the premiere of HBO’s documentary, The Alzheimer’s Project - not because of all the work I have done in Congress on Alzheimer’s - but sadly because my father, who suffers from the disease, is featured in the film,” said Rep. Linda Sánchez. “This legislation is near and dear to my heart because of my father and the millions of others like him who live every day with this disease. Help must be available for families of all colors and all ages whose resources are not sufficient to meet their needs. Increasing awareness, support, and outreach for those confronted with Alzheimer’s disease and for their families will help better equip our nation to face this disease.”
Every 71 seconds, someone develops Alzheimer’s disease, and by midcentury, someone will develop this disease every 33 seconds. This is important for all communities throughout the United States, but particularly for Hispanics who the Census Bureau projects, given long life spans and increasing growth within the American population, will experience a six-fold increase of Alzheimer’s cases by 2050.
The increase in Alzheimer's in the Hispanic population is particularly troubling because physicians, who diagnose and treat Alzheimer's, and caregivers, who help Alzheimer's patients get through the day, often lack Spanish language skills or sufficient knowledge of the culture to ensure that their treatment recommendations are carried out effectively.
Lack of access to health care and a strong cultural commitment to caring for one’s elders within the family are among the factors that make Hispanics with dementia less likely than non-Hispanics to see a physician and use related services provided by formal health professionals. Hispanic caregivers surveyed were significantly more likely (33 percent) than caregivers of other races (23 percent) to believe that Alzheimer’s disease is a normal part of the aging process and were also significantly more likely (67 percent) to dismiss the symptoms of Alzheimer’s disease as old age than other respondents of other races (53 percent). Delays in diagnosis and lack of early and consistent treatment can lead to higher levels of impairment and increased stress on family caregivers.
“The Alzheimer’s Foundation of America is pleased to endorse La Cura Act of 2009 and thanks Congresswoman Linda Sanchez for her leadership in helping to promote public awareness of Alzheimer's disease, especially among Hispanic populations,” said Eric J. Hall, President and CEO of the Alzheimer's Foundation of America. “Access to early diagnosis and treatment are critical for all individuals with Alzheimer’s disease and related dementias and for those of minority ethnic backgrounds in particular. Issues of stigma and mistrust as well as language and communication barriers are often magnified in the Hispanic community. Under La Cura Act, the NIH will have the necessary resources to examine ethnic health disparities that interfere with optimal quality of care. The act's emphasis on education related to risk reduction and the training of healthcare professionals to recognize and diagnose Alzheimer's disease are essential elements for disease management. By addressing key issues plaguing the Alzheimer's community, La Cura Act offers hope for families facing this heartbreaking disease."
La CURA will authorize increased funding to conduct adequate Alzheimer’s research, outreach, and education. The legislation helps expand the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) Alzheimer’s education and outreach activities in all communities, including those with cultural concerns about participation in sensitive research like the collection of brain tissue and genetic information. La CURA will address deficiencies in research participation by encouraging increased Hispanic participation in NIH clinical trials and epidemiological studies, promoting identification of culturally competent care, and addressing delays in diagnosis and underutilization of services by Hispanic patients.