Contact: Eben Burnham-Snyder, Rep. Ed Markey, 202-225-2836

Bipartisan legislation helps ensure that Alzheimer’s patients get early diagnosis and appropriate care

WASHINGTON (April 11, 2013) – In an effort to provide support to the estimated 5.2 million Americans suffering from Alzheimer’s disease, Reps. Edward J. Markey (D-Mass.) and Chris Smith (R-N.J.), House Co-Chairs of the Bipartisan, Bicameral Task Force on Alzheimer's Disease today introduced the Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act (H.R. 1507). HOPE for Alzheimer’s aims to increase diagnosis of Alzheimer’s disease and other dementias and provide information for newly diagnosed patients and their families. Companion legislation was also introduced today in the Senate by Sens. Debbie Stabenow (D-Mich.) and Susan Collins (R-Maine).

Alzheimer’s is a progressive, incurable, and fatal disease. Yet despite the accuracy of a clinical diagnosis, about half of the individuals meeting the diagnostic criteria for dementia are never actually diagnosed. In some patients, dementia symptoms can be due to a potentially reversible cause, underscoring the need for an appropriate diagnosis to ensure prompt treatment. Furthermore, lack of a dementia diagnosis inhibits appropriate care planning for patients who, in the majority of cases, suffer from additional chronic conditions.

The HOPE for Alzheimer’s Act will improve access to diagnosis of Alzheimer’s disease and related dementias, as well as care planning services, for newly diagnosed individuals and their families.  The bill enhances Medicare by providing a package of services specifically for the diagnosis and treatment of Alzheimer’s disease that includes a comprehensive diagnostic evaluation and care planning services to help patients manage any other chronic conditions.

“Half of Americans living with Alzheimer’s have never actually been diagnosed with the disease, even though we know that an early diagnosis means patients and caregivers are better able to plan for the challenges that lie ahead. In helping Alzheimer’s patients get a documented diagnosis, the HOPE for Alzheimer’s Act will make sure patients are connected to critical resources about the disease and have help managing other chronic conditions they are likely to face,” said Rep. Markey.

“I am pleased to join my co-chair Ed Markey in introducing the HOPE for Alzheimer’s Act.  A documented medical diagnosis of Alzheimer’s disease is critical so that caregivers can effectively manage treatment of a dreaded disease that has stricken their loved ones, who often suffer from other health conditions,” said Rep. Smith. “The HOPE Act is needed to help the millions of victims and their families cope with the devastation of dealing with Alzheimer’s Disease, obtain and better understand the diagnosis, and seek the best treatments available.”

“Alzheimer’s affects a growing number of Americans, including one out of nine seniors,” said Senator Stabenow. “Too many people suffering with this debilitating illness do not get diagnosed or know all of the treatment options available to them. The HOPE for Alzheimer's Act helps ensure earlier diagnosis and helps give Alzheimer's patients and their families the information and support they need to cope with this heartbreaking disease.”

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 16 million Americans will have Alzheimer’s disease by the year 2050.

"The Alzheimer’s Association is grateful to Representatives Markey and Smith and Senators Stabenow and Collins for their leadership in  improving quality of life for the more than 5 million Americans currently living with Alzheimer's," said Robert Egge, the Alzheimer’s Association’s Vice President of Public Policy. "We must do everything we can to support the growing Alzheimer’s community as we all work to meet the National Alzheimer’s Plan's essential timeline to prevent and effectively treat Alzheimer’s disease by 2025."

Carol Steinberg, acting chief executive officer of the Alzheimer’s Foundation of America said, “The HOPE Act does just what it says:  it provides real hope to people with Alzheimer’s disease and their caregivers by elevating detection and diagnosis of dementia onto the radar screens of both families and clinicians, and giving families the tools to gain a better understanding of the disease, available interventions and care planning. AFA applauds Reps. Smith and Markey for taking steps to address the Alzheimer’s disease crisis in our nation and for recognizing that there must be a more aggressive dialogue about this issue. As the champions of early detection of Alzheimer’s disease, AFA looks forward to working with them to energize Congress to pass this legislation and make a difference in the lives of people impacted by this tragic brain disorder now and the future.”

 Other original co-sponsors include: Rep. Michael Burgess, Rep. Shelley Moore Capito, Rep. Speier, Rep. Hank Johnson, Rep. Tsongas, Rep. Eleanor Holmes Horton, Rep. Chaka Fattah, Rep. Gwen Moore, Rep. Carolyn Maloney, Rep. Jon Runyan, Rep. Adam Schiff, Rep. Peter Roskam, Rep. John Garamendi, Rep. John Tierney, Rep. Steve Israel, Rep. Eddie Bernice Johnson

The HOPE for Alzheimer’s Act has received endorsements from: The Alzheimer’s Association, Alzheimer’s Foundation, Cure Alzheimer’s Fund, and UsAgainstAlzheimer’s.

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