Confronting Alzheimer's

On Wednesday evening, I attended the Alzheimer's Association's annual gala as a trustee of the Geoffrey Beene Foundation's Alzheimer's Initiative. Familiar public figures--Phyllis George and Chris Matthews, Maria Shriver, and Jay and Sharon Percy Rockefeller--all shared their experiences of caring for a parent with the disease. Robert Blackwell, a former senior CIA officer and expert on the Soviet Union, described his own battle with Alzheimer's and his efforts to educate the public through his speeches, lectures, and USA Today blog. This was the up-close and personal face of a tragic disease that demands the very best human qualities of love, compassion, and care.
  
At the same time, a broader vision emerged. The recipient of the Chairman's Leadership Award, French President Nicolas Sarkozy (represented by his ambassador), was honored for his $2.4 billion dollar strategic plan to establish a new Alzheimer's research foundation, improve diagnosis, enhance care, and change perceptions about the disease. As president of the European Union, Sarkozy put Alzheimer's patients on the European agenda. The award's presenters called upon President Obama to exert similar leadership in the fight against Alzheimer's disease here in the United States.
  
In fact, earlier that same day, a congressional Alzheimer's Study Group had released a final report calling for just such a plan. The Study Group, established in June of 2007 by the Congressional Task Force on Alzheimer's disease, is chaired by Newt Gingrich and Bob Kerrey. The group's conclusion is sobering:
  
Despite the grave implications of the mounting Alzheimer's disease crisis for America's future, the Federal Government has no comprehensive strategy to guide its efforts against this disease. There is no integrated statement of the vision, assumptions, objectives, strategies, measures of success, assignment of responsibilities, timelines, and anticipated resource requirements to guide and explain the Federal Government's overarching efforts to address the Alzheimer's crisis. In fact, our review indicates that there exists nothing even close.

The Study Group report presents the chilling statistics of the disease. Over 5 million people in the United States and more than 30 million people worldwide are living with Alzheimer's. The numbers are projected to rise dramatically, more than doubling to 13 million by 2050. Alzheimer's is primarily a disease of the elderly: it affects fewer than 2 percent of those between the ages 65-74, but 20 percent of those between 75 and 85, and more than 40 percent of those 85 and older. The problem will soon be compounded by the aging of the U.S. population. By 2050, 90 million people are expected to be over 65, and more than 50 million over 75. According to the report, Alzheimer's disease is now the sixth most rapidly growing cause of death in the United States.
  
The costs are also staggering. This year the federal government will spend more than $100 billion on Alzheimer's treatment through Medicare and Medicaid programs. Following current trends, the total spent by the federal government between now and 2050, measured in today's dollars, will be $20 trillion, $1 trillion of which will be spent in 2050 alone. These figures do not include the cost to family members who will bear so much of the caregiving responsibility. On average there are two family caregivers per patient. The Study Group estimates that each family will spend about $215,000 to care for a patient with the disease--about $40,000 to purchase on medications and services and $175,000 on uncompensated caregiving. The real cost to society over the next 40 years will be about $100 trillion. In the words of the Study Group, "Unless we take decisive action now, the Alzheimer's crisis could very easily surpass even the current economic crisis in the damage it inflicts on individuals and our economy."

What can be done? At present there is no universally accepted method of early diagnosis and no approved method to prevent, treat, or reverse the course of the disease. The Study Group makes an extraordinary recommendation, one intended to cut through much bureaucratic red tape and highlight the unique importance of Alzheimer's disease: It calls upon the president to create an Alzheimer's Solution Project Office and to appoint a chief executive officer to manage the effort. This new office will be governed by a board of directors, also appointed by the president. This group would be subject to oversight by a new joint committee of Congress that has both authorization and appropriation authority over the project. The work of this group will be monitored by a new committee convened by the secretary of Health and Human Services, composed of independent experts outside of the government, to assess the progress of the Alzheimer's Solutions Project. This committee will report directly to the president and the secretary. The group also recommends a near doubling of the current federal budget for Alzheimer's disease research, an increase of the National Institutes of Health budget from the current $645 million to $1 billion a year, and commensurate increases in the budgets of other agencies that support Alzheimer's research.
  
 There are three pillars to the Alzheimer's Solution Project:
  
1. National research efforts to discover means to delay, and ultimately prevent, Alzheimer's disease
  
The report states: "Many leading Alzheimer's researchers believe that we may be closing in on developing the capability to delay and even prevent Alzheimer's." Specific recommendations include accelerating research, including the development of new models to study and treat the disease in the laboratory, and a search for new "biomarkers" of the disease. Biomarkers are signals the body gives off that allow doctors to know who may get the disease, who has an early stage of the disease, how the disease is progressing, and whether or not drugs are working to reverse the course of the disease. The committee also calls for greater participation in clinical trials by Alzheimer's patients and their families, as well the establishment of new networks that link all major research databases and researchers. These initiatives are all to be supported by increased funding.
  
2. Replace the Medicare Fee-for Service with Value-Based Reimbursement
  
Reform of Medicare payments is the boldest and most innovative of the Study Group proposals. The Report leads with the statement: "Nothing shapes practice as profoundly as payments. From workforce recruitment and retention to procedures and practice patterns, Medicare and Medicaid reimbursement schedules and methods have a significant effect on the care patients do--or do not--receive." The recommendations of the report amount to nothing less than a systematic attack on Medicare's Fee-for-Service policy. The current Medicare system was designed for the treatment of acute not chronic diseases. Fee-for Service rewards health systems for the number of patients seen per hour and per day. Treatment of Alzheimer's requires health professionals and caregivers to spend more time with each patient.
  
Furthermore, Fee-for-a-Service discourages coordinated care, yet Alzheimer's patients very often suffer from a variety of other age related diseases. The current system provides little or no reimbursement for all services including counseling and medication management. Fee-for-Service discourages the use of community services and psychosocial interventions. According to the report, these failures are highlighted by the fact that the diagnosis of Alzheimer's is noted less than half the time on medial records, largely because health systems and doctors "lack the financial incentives to do so."

The Study Group recommends a switch to a value-based payment system that will reward doctors and health services for providing better health and quality of life. A prerequisite for a value-based approach is development of quality care indicators. The report recommends that the Centers for Medicare and Medicaid Services implement a demonstration program to study quality of care indicators for Alzheimer's, beginning with efforts to improve detection and treatment.
  
3. Create Public-Private partnerships to accelerate the discovery of solutions to the Alzheimer's prevention, detection, treatment and cure.
  
The Study Group recognizes the importance of the private sector in translating laboratory advances to practical applications. It calls for the creation of public-private research consortia that speed application of federally supported research programs.
  
The importance of the private sector was also highlighted at the leadership award ceremony by the CEO of Wyeth Pharmaceuticals, who said that his company alone had invested more than $600 million in Alzheimer's research over the past ten years and that private investment by the biotechnology and pharmaceutical industry amounted to several billion more.
  
The Study Group also called on President Obama to lead a national effort to increase awareness of the serious threat that Alzheimer's disease poses to our national wellbeing. The report calls on the president to declare prevention of Alzheimer's a national priority, and to explain to the public key elements of the administration's plan, specifically goals of the Alzheimer's solution project. The report argues that the Alzheimer's Solution Project should achieve iconic status, as worthy of the presidential imprimatur as previous great American projects: the 7-year effort to build the Transcontinental Railroad under President Lincoln, the 10-year Panama Canal Project of Teddy Roosevelt, the 6-year Manhattan Project initiated by Franklin Roosevelt, Kennedy's 8-year Apollo Program, and the 10-year Human Genome Project. By implication, solving the Alzheimer's crisis should be President Obama's great project.
  
For me, the Study Group report raised almost as many questions as it answered:
  

  • Can we muster the national will to address yet another serious problem in this time of grave economic crisis? 

  • Can we reform the care of Alzheimer's disease independent of a more general reform of our health care system? 
  
  • Value-based reimbursement seems reasonable, but what is it exactly? And if value-based reimbursement works for Alzheimer's, shouldn't it be implemented for all chronic diseases? 

  • How will the public-private partnerships work? How will conflicts of interest be addressed? What are models of success? 

  • Where exactly are we in the search for new means to prevent, diagnose, treat, and cure Alzheimer's disease?  

  • Left unmentioned by the Study Group is the war on cancer launched by President Nixon. That war is ongoing, despite 40 years of intense research on prevention and treatment. Is there more hope for preventing Alzheimer's than there has been thus far for preventing cancer?
  
There very fact that so many critical questions remain unanswered is reason enough to launch the Alzheimer's Solution Project.
Presented by

William Haseltine is a former professor at Harvard Medical School, where he researched cancer and HIV/AIDS. He is the founder of Human Genome Sciences, where he served as chairman and CEO, and the president of the William A Haseltine Foundation for Medical Sciences and the Arts. He lives in Washington, D.C.

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