Dec 28, 2014 7 min read

As the Observer-Reporter’s “No Longer Me” Alzheimer’s initiative draws to a close, we reflect on the victims, caregivers and loved ones whose lives have been forever altered as a result of the disease.

Over the past year, we introduced readers to local families who so graciously and courageously opened their homes to our staff to document their triumphs and tribulations. Their stories were powerful and compelling, and offered consolation and reassurance to others like them. Three Alzheimer’s patients died since the series launch in March, and it is with sorrow that we shared details of their final days.

That there is no cure for a disease that devours the memories and lives of its victims is the cold, harsh reality of Alzheimer’s disease. More than 5 million people are living with the disease at an annual cost of $615 billion. As Americans live longer, and because advancing age is the greatest risk factor for the disease, that number is expected to reach 16 million by 2050. Associated medical costs over the next 40 years are estimated at a staggering $20 trillion.

It is with hope and optimism that we look to the future and a cure. Key to achieving that goal is research.

But research comes at a hefty price. Experts say as much as $2 billion a year is necessary if we are to wipe out and prevent the disease that has become the sixth leading cause of death in America.

How bittersweet that at the close of this series we can report a pivotal development in the crusade for that crucial funding.

Two weeks ago, Congress approved Alzheimer’s legislation with the fiscal year 2015 funding bill, signed into law by President Obama. By incorporating the Alzheimer’s Accountability Act into the bill, lawmakers made a long-term commitment to Alzheimer’s research. The legislation creates a formal process to determine annual funding levels for aggressive research necessary to meet the goal of preventing and treating Alzheimer’s by 2025, as outlined in the National Alzheimer’s Project Act, a strategic plan to address the Alzheimer’s crisis.

The omnibus spending bill also provides an additional $25 million for Alzheimer’s research, which follows an unprecedented 2014 increase of $122 million for research, care and support.

The action was lauded by Alzheimer’s Association advocates, including Washington native David Lusk, who lost his mother to the disease on Oct 3, 2013. As associate director of advocacy for the Alzheimer’s Association Public Policy office in Washington, D.C., Lusk is working to raise awareness – and ultimately government funding – by coordinating a national grassroots advocacy movement, the Alzheimer’s Ambassador Program.

“Tuesday, Dec. 16, was my birthday,” he wrote in a Dec. 18 email. “I believe the president signed the omnibus late that night. What a great birthday gift and how fitting that was the day it was signed. While this second birthday without my mother is proving more painful (I think I was still in shock this time last year, protecting me from the reality of her loss), I can’t help but feel she had a hand in this from above. That was her nature – doing something significant for the benefit of others rather than herself.”

Calling for a “mission to the mind,” U.S. Sen. Edward J. Markey, D-Mass., introduced the Alzheimer’s Accountability Act in April along with Sen. Mike Crapo, R-Idaho. Markey, founder and co-chairman of the Bipartisan Congressional Task Force on Alzheimer’s, which authored NAPA, also lost his mother to the disease.

In a nutshell, the act requires scientists at the National Institutes of Health to submit annual research budgets to the president and Congress to guide funding allocations critical to meeting the 2025 goal.

While jubilant about the victory, advocates say much work remains if reaching that goal is to be met.

“There is still a long way to go,” Lusk said. “But, never before has the Alzheimer’s disease community won so many policy battles in five years as it has since the 2010 passage of NAPA,” referring to the National Alzheimer’s Project Act. “Yet, the recent progress is exciting and leaves great hope in achieving the Alzheimer’s Association’s vision: a world without Alzheimer’s.”

Lusk, in his role as associate director of advocacy, is working to continue to gain lawmakers’ support through the Alzheimer’s Association’s ambassador program. The program employs a “troops on the ground” approach to advocacy, relying on an ambassador, or Alzheimer’s advocate, in each congressional district to build relationships with lawmakers and request action on the association’s legislative goals.

“People need to talk about this disease,” Lusk said. “They need to talk for those who can’t because they’re caring for someone. They need to talk because the disease has taken away (patients’) ability to speak, to ask (lawmakers) to make this a priority, to make research a priority.”

He worries about the impact the November election may have had on inroads Alzheimer’s ambassadors have established in districts in which incumbents were unseated.

“We saw a number of folks lose elections, many of whom were sitting members of Congress,” he said in a phone interview earlier this month. And, two powerful supporters of Alzheimer’s initiatives – U.S. Reps. John Dingell, D-Mich., and Harry Waxman, D-Calif. – did not seek re-election.

“You have these senior statesmen who step down, and you have to start over again. That’s one of the downsides of politics.”

Lusk noted that the federal government’s significant commitments to fighting breast cancer, heart disease and HIV/AIDS have contributed to advancements in treatments and a decline in deaths from those diseases. A similar commitment in funding for Alzheimer’s research could one day yield similar results.

For Lusk, the battle against Alzheimer’s is a personal one.

“Guilt and anger. That’s what drives me every day,” Lusk said during a visit to his hometown earlier this year. “I let my mother down, to be honest. I just wish I could’ve done more.”

He described his mother, Josephine, or Jo, as she liked to be called, as a vibrant woman who loved country music, polka dancing with her husband, Jack, and helping out with Tuesday night bingo at the American Legion. Though she was diagnosed in 2008 at the age of 70, David knew “something was wrong” as early as 2005.

Jack Lusk cared for his wife in their North Franklin Township home for as long as he could before moving her to the Washington County Health Center on June 20, 2013.

“In September, I walked in, and I thought someone else was in her bed,” David said. “I thought hospice was in there feeding someone else, and I thought I was in the wrong room, and said, ‘Excuse me.’ And then I realized it was my mother.

“That’s a devastating feeling when you don’t even recognize your own mother. That’s a memory that will be tough to get over.”

Raising awareness will go a long way in beating Alzheimer’s, Lusk said, offering a two-word message for readers: “Get active.

“Talk to federal and state legislators, and tell them we’ve got to make this a priority.”

He recalled a conversation he had with state Rep. Brandon Neuman, D-Canonsburg, at the Alzheimer’s Walk in Washington in September.

“He told me that he didn’t really hear from many people after last year’s walk, if any,” Lusk said. “If he doesn’t have a stack of letters or notes from thousands of phone calls, how is he to make an argument to his colleagues in the Pennsylvania Assembly, Senate, that this needs to be a big issue?”

And to those who don’t know what to say to their lawmakers, Lusk repeated the advice he offered when he spoke at this year’s walk.

“I held up a torn-out article from the O-R and said, ‘This newspaper, this publication has done a lot to say what you need to say. Just talk about the stories that are taking lives away, taking memories away.'”