Bipartisan legislation would help reduce costs through early diagnosis, inclusion of caregivers in medical discussions

WASHINGTON, D.C. – In an effort to provide support to the estimated 5.4 million Americans suffering from Alzheimer’s disease, Representatives Edward J. Markey (D-Mass.) and Chris Smith (R-N.J.), House Co-Chairs of the Bipartisan, Bicameral Task Force on Alzheimer's Disease, and Representatives Michael Burgess (R-Texas) and Jim McDermott (D-Wash.) today introduced the Health Outcomes, Planning and Education (H.O.P.E.) for Alzheimer’s Act. The H.O.P.E. for Alzheimer’s Act, H.R. 1386, aims to increase diagnosis of Alzheimer’s disease and other dementias and provide information for newly diagnosed patients and their families.

The bill would provide Medicare coverage for comprehensive diagnoses of Alzheimer’s disease to guarantee that individuals who show signs of Alzheimer’s receive a formal diagnosis from their doctor for inclusion in their medical record, helping to improve care and reduce costs by providing information and resources to newly diagnosed patients and their families. Companion legislation, S. 738, was also introduced today in the Senate by Senators Debbie Stabenow (D-Mich.) and Susan Collins (R-Maine).

Often family members notice the symptoms of Alzheimer’s in their loved ones but it’s only years later that a doctor formally diagnoses the disease,” said Rep. Markey. “We need to streamline the diagnosis process, educate our nurses and primary caregivers, and ensure family members are included in conversations about treatments and resources. Early diagnosis can help patients and families avoid crises and complications while reducing costs for the federal government.” 
“I am pleased to join my friend Ed Markey in introducing the H.O.P.E. for Alzheimer’s Act to give victims of Alzheimer’s and their families desperately needed help to confront this dreaded disease,” said Rep. Smith.  “Documentation of a diagnosis of Alzheimer’s disease is critical to effectively cope with this debilitating disease, which patient’s often suffer in addition to other serious health conditions.  Health care planning services provided under this Act, including available treatments and support services, will help equip individuals and families to face the difficult years ahead – an average of four to eight years after diagnosis.”
“Alzheimer’s is one of the most burdensome diseases facing Americans today,” said Rep. Burgess. “It takes an immense emotional, physical, and financial toll on those diagnosed and their families. Being able to navigate through this complex disease takes a variety of care planning services ranging from medical and non-medical options for on-going treatment and care to ensuring documentation of a diagnosis in a medical record. The H.O.P.E. Act will provide valuable support services and help ensure that individuals with Alzheimer’s and their caregivers receive the information they need by bringing physicians, patients, and caregivers together to understand the disease.”
“Alzheimer's affects a growing number of Americans including one out of eight seniors,” said Sen. Stabenow. “Too many elderly people suffering with this dreaded illness do not get diagnosed or know all of the treatment options available to them. The H.O.P.E. for Alzheimer’s Act helps ensure earlier diagnosis and equips Alzheimer’s patients and their families with betters tools to cope with this heartbreaking disease."
“An estimated 5.3 million Americans are living with Alzheimer’s disease today,” said Sen. Collins, Senate Co-Chair of the Bipartisan Congressional Task Force on Alzheimer’s.  “This important legislation will help increase detection and diagnosis of Alzheimer’s disease and related dementias, and provide increased access to information, support, and care for newly diagnosed patients and their families.”
“The Alzheimer’s Association commends Representative Markey for his sustained dedication to Alzheimer¹s issues as demonstrated by the introduction of the H.O.P.E. for Alzheimer’s Act,” said Robert Egge, the Alzheimer’s Association’s Vice President of Public Policy and Advocacy. “When enacted into law, this legislation will improve diagnosis of Alzheimer’s and provide newly diagnosed Alzheimer¹s patients and their families with access to information, resources and supportive services. As challenging a disease as Alzheimer’s is, these provisions will help millions of American families by ensuring they have the tools and resources to better manage the challenges of Alzheimer’s. As one of the Chairs of the Alzheimer’s Congressional Task Force with a long history of calling attention to the plight of Alzheimer’s families and working tirelessly to deliver solutions, no one understands this more than Representative Markey.”
Most people with Alzheimer’s disease and other dementias have not been diagnosed. Recent studies indicates that only 19 percent of people with Alzheimer’s and other dementias had a diagnosis of the condition in their primary care medical record, making it challenging to effectively connect patients during the early stages of the disease to services that could help them. Studies have shown positive findings associated with the provision of this type of early information and support, including higher quality of care based on accepted guidelines, increased use of needed community services, reduced patient behavioral and psychiatric symptoms, and reduced caregiver stress and depression. It is estimated that more than 13 million Americans will have Alzheimer’s disease by the year 2050.
Other original co-sponsors include: Rep. Bordallo (D- Guam), Rep. Christensen (D-V.I.), Rep. Grijalva (D-Ariz.), and Rep. Deutch (D-Fla.), Rep. Pierluisi (D-P.R.).
The Alzheimer’s Association, Alzheimer’s Foundation, Cure Alzheimer’s Fund, and UsAgainstAlzheimer’s have endorsed the H.O.P.E. for Alzheimer’s Act.