I
110th CONGRESS
1st Session
H. R. 1560
IN THE HOUSE OF REPRESENTATIVES
March 19, 2007
Mr. Markey (for himself and Mr. Smith of New Jersey) introduced the following bill; which was referred to the Committee on Energy and Commerce
A BILL
To amend the Public Health Service Act to fund breakthroughs in Alzheimer’s disease research while providing more help to caregivers and increasing public education about prevention.
Short title
This Act may be cited as the
Alzheimer’s Breakthrough Act of
2007
.
Findings
Congress makes the following findings:
Alzheimer's disease is a disorder that destroys cells in the brain. The disease is the leading cause of dementia, a condition that involves gradual memory loss, decline in the ability to perform routine tasks, disorientation, difficulty in learning, loss of language skills, impairment of judgment, and personality changes. As the disease progresses, people with Alzheimer's disease become unable to care for themselves. The loss of brain cells eventually leads to the failure of other systems in the body.
An estimated 4,500,000 Americans have Alzheimer's disease and 1 in 10 individuals have a family member with the disease. By 2050, the number of individuals with the disease could range from 13,000,000 to 16,000,000 unless science finds a way to prevent or cure the disease.
One in 10 people over the age of 65, and nearly half of those over the age of 85 have Alzheimer's disease. Younger people also get the disease.
The Alzheimer's disease process may begin in the brain as many as 20 years before the symptoms of Alzheimer's disease appear. An individual will live an average of 8 years and as many as 20 once the symptoms of Alzheimer's disease appear.
The average lifetime cost of care for an individual with Alzheimer's disease is $170,000.
In 2005, Medicare alone spent $91,000,000,000 for the care of individuals with Alzheimer's disease and this amount is projected to increase to $160,000,000,000 in 2010.
Ninety-five percent of Medicare beneficiaries with Alzheimer’s disease have one or more other chronic conditions that are common in the elderly, coronary heart disease (30 percent), congestive heart failure (28 percent), diabetes (21 percent), and chronic obstructive pulmonary disease (17 percent).
Seven in 10 individuals with Alzheimer's disease live at home. While almost 75 percent of home care is provided by family and friends, the average annual cost of paid care for people with Alzheimer's disease at home is $19,000 per year. Almost all families pay this cost out of pocket.
Half of all nursing home residents have Alzheimer's disease or a related disorder. The average annual cost of Alzheimer's disease nursing home care is more than $70,000. Medicaid pays half of the total nursing home bill and helps 2 out of 3 residents pay for their care. Medicaid expenditures for nursing home care for people with Alzheimer's disease are estimated to increase from $21,000,000,000 in 2005 to $24,000,000,000 in 2010.
In fiscal year 2007, the Federal Government will spend an estimated $642,000,000 on Alzheimer's disease research. If the United States achieves its research goals (preventing the onset of Alzheimer's disease in those at risk and treating and delaying progression of the disease in those who have symptoms), annual Medicare savings would be $51,000,000,000 by 2015 and $88,000,000,000 by 2020. Annual Medicaid savings would be $10,000,000,000 in 2015 and $17,000,000,000 by 2020 and the projected number of cases of Alzheimer's disease can be reduced by 40 percent by the middle of the century.
An analysis by the Montefiore Medical Center and the Albert Einstein College of Medicine estimated that the annual value of the informal care system is $306,000,000,000. Family caregiving comes at enormous physical, emotional, and financial sacrifice, putting the whole system at risk.
One in 8 Alzheimer's disease caregivers becomes ill or injured as a direct result of caregiving. One in 3 uses medication for problems related to caregiving. Older caregivers are 3 times more likely to become clinically depressed than others in their age group.
Elderly spouses strained by caregiving are 63 percent more likely to die during a given 4-year period than other spouses their age.
Almost 3 of 4 caregivers are women. One in 3 has children or grandchildren under the age of 18 living at home. Caregiving leaves them less time for other family members and they are much more likely to report family conflicts because of their caregiving role.
Most Alzheimer's disease caregivers work outside the home before beginning their caregiving careers, but caregiving forces them to miss work, cut back to part-time, take less demanding jobs, choose early retirement, or give up work altogether. As a result, in 2002, Alzheimer's disease cost American business an estimated $36,500,000,000 in lost productivity, as well as an additional $24,600,000,000 in business contributions to the total cost of care.
Increasing the Federal commitment to alzheimer’s research
Doubling nih funding for Alzheimer’s disease research
For the purpose of conducting and supporting research on Alzheimer’s disease (including related activities under subpart 5 of part C of title IV of the Public Health Service Act (42 U.S.C. 285e et seq.)), there are authorized to be appropriated $1,300,000,000 for fiscal year 2008, and such sums as may be necessary for each of fiscal years 2009 through 2012.
Priority to Alzheimer’s disease research
Section 443 of the Public Health Service Act (42 U.S.C. 285e) is amended—
by
striking The general
and inserting (a) In general.—The
general
; and
by adding at the end the following:
Priorities
The Director of the Institute shall, in expending amounts appropriated to carry out this subpart, give priority to conducting and supporting Alzheimer’s disease research.
.
Alzheimer's disease prevention initiative
Section 443 of the Public Health Service Act (42 U.S.C. 285e), as amended by section 102, is further amended by adding at the end the following:
Prevention trials
The Director of the Institute shall increase the emphasis on the need to conduct Alzheimer's disease prevention trials within the National Institutes of Health.
Neuroscience initiative
The Director of the Institute shall ensure that Alzheimer’s disease is maintained as a high priority for the existing neuroscience initiative.
.
Alzheimer’s disease clinical research
Clinical Research
Subpart 5 of part C of title IV of the Public Health Service Act (42 U.S.C. 285e et seq.) is amended by adding at the end the following:
Alzheimer’s disease clinical research
In General
The Director of the Institute, pursuant to section 444(d), shall conduct and support cooperative clinical research regarding Alzheimer’s disease. Such research shall include—
investigating therapies, interventions, and agents to detect, treat, slow the progression of, or prevent Alzheimer’s disease;
enhancing the national infrastructure for the conduct of clinical trials;
developing and testing novel approaches to the design and analysis of such trials;
facilitating the enrollment of patients for such trials, including patients from diverse populations;
developing improved diagnostics and means of patient assessment for Alzheimer’s disease;
the conduct of clinical trials on potential therapies, including readily available compounds such as herbal remedies and other alternative treatments;
research to develop better methods of early diagnosis, including the use of current imaging techniques; and
other research as determined appropriate by the Director of the Institute, the Alzheimer’s Disease Centers and Alzheimer’s Disease Research Centers established under section 445.
Early Diagnosis and Detection Research
In general
The Director of the Institute, in consultation with the directors of other relevant institutes and centers of the National Institutes of Health, shall conduct, or make grants for the conduct of, research related to the early detection, diagnosis, and prevention of Alzheimer’s disease and of mild cognitive impairment or other potential precursors to Alzheimer’s disease.
Evaluation
The research described in paragraph (1) may include the evaluation of diagnostic tests and imaging techniques.
Study
Not later than 1 year after the date of enactment of this section, the Director of the Institute, in cooperation with the heads of other relevant Federal agencies, shall conduct a study, and submit to Congress a report, to estimate the number of individuals with early-onset Alzheimer’s disease (those diagnosed before the age of 65) and related dementias in the United States, the causes of early-onset dementia, and the unique problems faced by such individuals, including problems accessing government services.
Vascular Disease
The Director of the Institute, in consultation with the directors of other relevant institutes and centers of the National Institutes of Health, shall conduct, or make grants for the conduct of, research related to the relationship of vascular disease and Alzheimer’s disease, including clinical trials to determine whether drugs developed to prevent cerebrovascular disease can prevent the onset or progression of Alzheimer’s disease.
Treatments and prevention
The Director of the Institute shall place special emphasis on expediting the translation of research findings under this section into effective treatments and prevention strategies for at-risk individuals.
National Alzheimer’s Coordinating Center
The Director of the Institute may establish a National Alzheimer’s Coordinating Center to facilitate collaborative research among the Alzheimer’s Disease Centers and Alzheimer’s Disease Research Centers established under section 445.
.
Alzheimer’s Disease Centers
Section 445(a)(1) of the
Public Health Service Act (42 U.S.C.
285e–2(a)(1)) is amended by inserting , and outcome measures and disease
management,
after treatment methods
.
Research on Alzheimer’s disease caregiving
Section 445C of the Public Health Service Act (42 U.S.C. 285e–5) is amended—
by striking
Sec.
445C. (a)
and inserting the following:
Research on Alzheimer’s disease services and caregiving
Services Research
;
by striking subsections (b), (c), and (e);
by inserting after subsection (a) the following:
Interventions Research
The Director shall, in collaboration with the directors of the other relevant institutes and centers of the National Institutes of Health, conduct, or make grants for the conduct of, clinical, social, and behavioral research related to interventions designed to help caregivers of patients with Alzheimer’s disease and related disorders and improve patient outcomes.
; and
in subsection (d)
by striking (d) the Director
and inserting (c)
Model curricula and
techniques.—The Director
.
National summit on alzheimer's disease
In General
Not later than 3 years after the date of enactment of
this Act, and every 3 years thereafter, the Secretary of Health and Human
Services (referred to in this section as the Secretary
) shall
convene a summit of researchers, representatives of academic institutions,
Federal and State policymakers, public health professionals, and
representatives of voluntary health agencies to provide a detailed overview of
current research activities at the National Institutes of Health, as well as to
discuss and solicit input related to potential areas of collaboration between
the National Institutes of Health and other Federal health agencies, including
the Centers for Disease Control and Prevention, the Administration on Aging,
the Agency for Healthcare Research and Quality, and the Health Resources and
Services Administration, related to research, prevention, and treatment of
Alzheimer’s disease.
Focus Areas
The summit convened under subsection (a) shall focus on—
a broad range of Alzheimer’s disease research activities relating to biomedical research, prevention research, and caregiving issues;
clinical research for the development and evaluation of new treatments for the disease;
translational research on evidence-based and cost-effective best practices in the treatment and prevention of the disease;
information and education programs for health care professionals and the public relating to the disease;
priorities among the programs and activities of the various Federal agencies regarding such diseases; and
challenges and opportunities for scientists, clinicians, patients, and voluntary organizations relating to the disease.
Report
Not later than 180 days after the date on which the National Summit on Alzheimer’s Disease is convened under subsection (a), the Director of National Institutes of Health shall prepare and submit to the appropriate committees of Congress a report that includes a summary of the proceedings of the summit and a description of Alzheimer’s research, education, and other activities that are conducted or supported through the national research institutes.
Public Information
The Secretary shall make readily available to the public information about the research, education, and other activities relating to Alzheimer’s disease and other related dementias, conducted or supported by the National Institutes of Health.
Public health promotion and prevention of Alzheimer's disease
Enhancing public health activities related to cognitive health, Alzheimer's disease, and other dementia's
Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following:
Alzheimer's disease public education campaign
In general
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall directly or through grants, cooperative agreements, or contracts to eligible entities, conduct, support, and promote the coordination of research, investigations, demonstrations, training, and studies relating to the control, prevention, and surveillance of the risk factors associated with cognitive health, Alzheimer’s disease, and other dementias, and seek early recognition and intervention in the course of Alzheimer’s disease and other dementias.
Certain activities
Activities under subsection (a) shall include—
providing support for the dissemination and implementation of the Roadmap to Maintaining Cognitive Health to effectively mobilize the public health community into action;
the development of coordinated public education programs, services, and demonstrations which are designed to increase general awareness of cognitive function and promote a brain healthy lifestyle;
the development of targeted communication strategies and tools to educate health professionals and service providers about the early recognition, diagnosis, care, and management of Alzheimer's disease and dementia, and to provide consumers with information about interventions, products, and services that promote cognitive health and assist consumers in maintaining current understanding about cognitive health based on the best science available; and
provide support for the collection, publication, and analysis of data on the prevalence and incidence of cognitive health, Alzheimer's disease, and other dementias, and the evaluation of existing population-based surveillance systems (such as the Behavioral Risk Factors Surveillance Survey (BRFFS) and the National Health Interview Survey (NHIS)) to identify limitations that exist in the area of cognitive health, and if necessary, the development of a surveillance system for cognitive decline, including Alzheimer's disease and dementia.
Grants
The Secretary may award grants under this section—
to State and local health agencies for the purpose of—
coordinating activities related to cognitive health, Alzheimer's disease, and other dementias with existing State-based health programs and community-based organizations;
providing Alzheimer's disease education and training opportunities and programs for health professionals; and
developing, testing, evaluating, and replicating effective Alzheimer's disease intervention programs to maintain or improve cognitive health; and
to nonprofit private health organizations with expertise in providing care and services to individuals with Alzheimer’s disease for the purpose of—
disseminating information to the public;
testing model intervention programs to improve cognitive health; and
coordinating existing services with State-based health programs.
Authorization of appropriations
For the purpose of carrying out this section, there are authorized to be appropriated $15,000,000 for fiscal year 2008, and such sums as may be necessary for each of fiscal years 2009 through 2012.
.
Assistance for caregivers
Alzheimer's disease call center
Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.), as amended by section 201, is further amended by adding at the end the following:
Alzheimer's disease call center
In general
The Secretary, acting through the Administration on Aging, shall award a cooperative grant to a non-profit or community-based organization to support the establishment and operation of an Alzheimer’s Call Center that is accessible 24 hours a day, 7 days a week, to provide expert advice, care consultation, information, and referrals nationwide at the national and local level regarding Alzheimer's disease.
Activities
The Alzheimer’s Call Center established under subsection (a) shall—
collaborate with the Administration on Aging in the development, modification, and execution of the Call Center’s work plan;
assist the Administration on Aging in developing and sustaining collaborations between the Alzheimer’s Call Center, the Eldercare Locator, the grantees under the Alzheimer’s Demonstration Program, and the Aging Network;
provide a 24-hour a day, 7-days a week toll-free Call Center with trained professional staff who are available to provide care consultation and crisis intervention to individuals with Alzheimer’s disease and other dementias, their family and informal caregivers, and others as appropriate;
be accessible by telephone through a single 1–800 telephone number, website, and e-mail address; and
evaluate the impact of the Call Center’s activities and services.
Multilingual capacity
The Call Center established under this section shall have a multilingual capacity and shall respond to inquiries in at least 140 languages through its own bilingual staff and with the use of a language translation service.
Response to emergency and ongoing needs
The Call Center established under this section shall collaborate with community-based organizations, including non-profit agencies and organizations, to ensure local, on-the-ground capacity to respond to emergency and on-going needs of Alzheimer’s patients, their families, and informal caregivers.
Authorization of appropriations
For the purpose of carrying out this section, there are authorized to be appropriated $1,000,000 for fiscal year 2008, and such sums as may be necessary for each of fiscal years 2009 through 2012.
.
Innovative Alzheimer's care State matching grant program
Authorization of appropriations
Section 398B(e) of the Public Health Service Act (42 U.S.C. 280c–5(e)) is amended—
by striking and such
and
inserting such
; and
by inserting before the period the
following: , $25,000,000 for fiscal year 2008, and such sums as may be
necessary for each of fiscal years 2009 through 2012
.
Program expansion
Section 398(a) of the Public Health Service Act (42 U.S.C. 280c–3(a))
in paragraph (2),
by inserting after other respite care
the following: and
care consultation including assessment of needs, assistance with planning and
problem solving and providing supportive listening
;
in paragraph (3),
by striking ; and
and inserting the following: , and
individuals in frontier areas (as defined as areas with 6 or fewer people per
square mile or areas in which it takes people at least 60 minutes or 60 miles
to reach a market or service area);
;
in paragraph (4), by striking the period at the end and inserting a semicolon; and
by adding at the end the following:
to encourage grantees under this section to coordinate activities with other State officials administering efforts to promote long-term care options that enable older individuals to receive long-term care in home- and community-based settings, in a manner responsive to the needs and preferences of older individuals and their family caregivers;
to encourage grantees under this section to—
engage in activities that support early detection and diagnosis of Alzheimer’s disease and related dementia;
provide training to medical personnel including hospital staff, emergency room personnel, home health care workers and physician office staff, rehabilitation services providers, and caregivers about how Alzheimer’s can affect behavior and impede communication in medical and community settings;
develop guidelines to provide the medical community with up-to-date information about the best methods of care for individuals with Alzheimer’s disease;
inform community physicians about available resources to assist them in detecting and managing Alzheimer’s; and
raise awareness among community physicians about the availability of community-based organizations which can assist individuals with Alzheimer’s and their caregivers;
to encourage grantees under this section to engage in activities that use findings from evidence-based research on service models and techniques to support individuals with Alzheimer’s disease and their caregivers; and
to encourage grantees under this section to incorporate best practices for effectively serving individuals with Alzheimer’s disease in community-based settings into ongoing State systems change and long-term care activities.
.