Abstract
A Global Epidemic
A leading public health problem in our aging population are the major neurocognitive disorders, defined as “A substantial cognitive decline from a previous level of performance in one or more of the domains outlined above based on the concerns of the individual, a knowledgeable informant, or the clinician; and a decline in neurocognitive performance, typically involving test performance in the range of two or more standard deviations below appropriate norms (i.e., below the third percentile) on formal testing or equivalent clinical evaluation.” 1 The most common subtype is Alzheimer’s disease (AD), comprising over half. The remainder are considered “related disorders” and include vascular cognitive impairment, Lewy body diseases, and frontotemporaldementia. 1 Alzheimer’s disease and related disorders (ADRD) are a global epidemic. 2
Worldwide, there are 35.6 million people who have dementia (major neurocognitive disorders) of which 24.9 million have AD. 3 The World Health Organization reports “every year, there are 7.7 million new cases of people with the disease” (p. 1). 4 At this rate, “the total number of people with the dementia is projected to almost double every 20 years, to 65.7 million in 2030 and 115.4 million in 2050” (p. 2). 4
Conditions in Pennsylvania are at Crisis Levels
The situation in the United States mirrors the global landscape. It is estimated that 5 million Americans are afflicted with AD. 5 That “number is expected to triple by 2050” (p. 1). 6 In 2010, the medical cost associated with ADRD was a staggering US$215 billion. 7 In many respects, the ADRD conditions in the Commonwealth of Pennsylvania are worse than those reflected on the national and international stage.
The National Alzheimer’s Project Act was signed into law in January 2011. It required the US Department of Health and Human Services to develop a national strategic plan to coordinate efforts among the federal government. The National Plan, however, clearly put the states on the frontline of the battlefield in the war against ADRD.
In response, in part, to the shocking national ADRD statistics, Pennsylvania Governor Tom Corbett signed Executive Order 2013-01 establishing the Pennsylvania Alzheimer’s Disease Planning Committee, which was charged with developing a state plan to address the growing ADRD epidemic in the Commonwealth. 8 Although the Committee operates within the Department of Aging, “appointments are for one year and made by the Governor. Members serve at the pleasure of the Governor” (p. 40). 9
As an initial step, the committee developed an Action Plan, which was comprised of 7 recommendations. Although all 7 recommendations had some merit in addressing the ADRD crisis in the Commonwealth, none of the proposals had any degree of specificity as to how the state would fund and meet financial burdens associated with ADRD, let alone those projected burdens by the year 2050. Most important, the recommendations also fell short of providing a mechanism by which citizens afflicted with ADRD would meet present medical costs associated with the care and treatment for their disease.
This Position Paper proposes 3 methods of funding to meet current and future financial obligations associated with ADRD. They are legally required, incentive based, and innovative financial products.
Legally Required
The newly formed committee under the Wolf Administration should recommend 4 actions to be taken immediately to give some relief to the ADRD financial crisis in the Commonwealth. First, the committee should ensure the Health Insurance Portability and Accountability Act provides for the mobility of ADRD. Second, the committee should recommend the enactment of legislation to provide direct financial support to caregivers. Third, the committee should recommend the enactment of legislation that would provide tuition forgiveness to those medical students who would specialize and provide care to patients who have ADRD. Fourth, the committee should develop a new recommendation that would require all medical insurance providers to cover medical costs associated with ADRD.
Incentive Based
The committee should identify a number of financial resources that could be drawn upon to fund an ADRD pool of monies, which would be made available to caregivers and patients involved with ADRD. Source funding would be determined by financial need with the goal of first assisting the poor and those in financial hardship. To attract funds to the ADRD pool of monies, legislation should be enacted to make available a tax incentive program for donors.
Innovative Financial Products
The committee needs to partner with Pennsylvania-headquartered banking and credit union institutions to develop new financial products that would be tailored to fund ADRD programs. These new financial products should be structured in a way that their investment grade would be considered low risk by rating organizations such as Standard and Poor’s and Morningstar. The products should be made suitable for investment in retirement plans.
The Committee Must Position Itself in a Crisis Action Mode
The ADRD crisis in Pennsylvania is serious. Time is not on the Commonwealth’s side. Pennsylvania has the fourth highest percentage of elderly population in the nation, with the incidence of ADRD rising in line with the aging population. Over 400,000 Pennsylvanians are likely afflicted with ADRD, and the toll of the disease extends beyond those affected to their families, friends and communities. All told, one in 12 Pennsylvania families is affected by ADRD (p. 3).
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Education and training programs dealing with ADRD are important. Research devoted to ADRD is significant. However, what is needed right now is a comprehensive Financial Plan that provides: (1) immediate financial relief for those having ADRD and their caregivers and (2) a roadmap to adequately fund ADRD monetary obligations well into the year 2050.