Preparing America for an Alzheimer’s breakthrough 

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Sooner or later, science will deliver medicines to prevent, slow or cure Alzheimer’s disease, but America’s health care infrastructure is woefully unprepared to deliver such innovative treatments to the millions of people who would need access. Unless the health care system accelerates its readiness for a breakthrough treatment, patients could find it difficult or impossible to get access to life-changing, perhaps life-saving, medical advancements when they are ready. 

Currently, there are no disease-modifying treatments, but results from recent trials indicate there could be one or more therapies available as early as 2020. The federal government set a goal in 2012 to achieve prevention and disease-modifying treatment by 2025.
{mosads}Today at least 5.5 million Americans have Alzheimer’s disease or another form of dementia, and that number only continues to grow. A recent study conducted by the Rand Corporation revealed that by the year 2019, nearly 15 million Americans will be living with mild cognitive impairment, which could be an early sign of Alzheimer’s disease. These individuals will need to be evaluated by specialists, undergo diagnostic testing, and work with health providers to develop a care and treatment plan. The analysis shows that the current health care infrastructure is insufficient to handle that expected case load, and could force patients and their families to wait more than 18 months for treatment in the year 2020. America faces a critical, massive and worsening shortage of neurologists, geriatricians, geriatric psychiatrists and treatment facilities.
Imagine the devastation of knowing that science had delivered a proven therapy to prevent or slow Alzheimer’s disease but you or your loved one got the medication too late only because the health care system lacked capacity. The Rand research projects that delayed diagnosis and treatment, caused by waitlists to see specialists and access imaging and treatment centers, would result in over 2 million patients developing Alzheimer’s-type dementia between 2020 and 2040. That is 2 million avoidable cases of dementia, 2 million families put on an unrelenting decades-long road of crushing loss because the health care system failed to be prepared for breakthrough treatments.
The problems facing care delivery are complex and will not be solved by one agency or governing body alone. It will take the collective and purposefully coordinated efforts of national, state and local governments along with professional societies, medical schools, and the private sector to prepare the health care system to provide timely treatment to millions of Americans. It also will take a significant awareness campaign to educate Americans about the need for early detection, diagnosis and intervention.
Our country has taken steps in the right direction, but not fast or comprehensively enough. Since the landmark National Alzheimer’s Project Act (NAPA) became law in 2011, the federal government and non-governmental organizations have focused on developing and aggressively executing against the National Alzheimer’s Plan. Congress has rapidly increased funding for Alzheimer’s research, and strengthened the capacity of federal agencies to accelerate the science while ensuring this science is informed by patient perspectives on how research is conducted along with what that research should deliver. Through Medicare, Congress has given health care providers tools to improve detection and diagnosis of dementia along with support for physicians to help families plan dementia care. Non-governmental organizations have led transformative efforts to bring Alzheimer’s disease and other forms of dementia out of the shadows, combat stigma, and raise public demand for progress in both clinical care and medical science. 
For all the progress in funding science, encouraging physicians to help families plan care, and changing public attitudes about dementia, America lacks the health care infrastructure needed to realize the full potential of such progress. We are no more ready now than when NAPA became law to deliver breakthrough Alzheimer’s treatments when the time arrives. 
America cannot wait until Alzheimer’s breakthrough medicines are on the market before addressing the already desperate shortage of specialists. We know how to train Alzheimer’s specialists but we must begin immediately to ramp up the number of medical students who become such specialists. Federal and state governments must carefully consider medical school tuition and loan repayment incentives along with fundamental improvements to Medicare and Medicaid rates paid to physicians who diagnose and treat Alzheimer’s and other conditions common among older Americans. 
Training the workforce of specialists must emphasize the central importance of timely, accurate, compassionate and actionable detection and diagnosis. The earlier in disease progression that the diagnosis is made – and the more compassionately the news is conveyed by physicians who are prepared to encourage and support their patients – the more able and willing patients and families will be to make informed and proactive medical, legal, financial, spiritual and broader quality of life decisions. 
Public and private funders must redouble efforts to develop more accurate, less expensive, and easier to use diagnostic tests. Whether that is expanding availability of PET imaging, finding more patient-friendly alternatives to lumbar punctures, or developing better blood testing options, the health care system can and must make diagnosis readily available to all Americans. And, if disease prevention and treatment breakthroughs require infusion rather than self-administered pills, the health care system will need to build out rapidly some combination of home-infusion services and a nationwide network of treatment centers that enable meaningful access for people in rural or otherwise traditionally medically underserved communities.
Preparing for a scientific breakthrough cannot wait until after medicines reach the market. Acting boldly, decisively and urgently – beginning now – to build our health care infrastructure will determine whether America will be ready when the time comes to fully meet the opportunity of preventing and effectively treating dementia.
Ian Kremer is the executive director of Leaders Engaged on Alzheimer’s Disease (LEAD Coalition), a diverse and growing national coalition of more than 90 member organizations committed to stopping Alzheimer’s disease and other forms of dementia.  

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