It is truly amazing how many people come up to me as soon as they learn I work for the Alzheimer’s Association and tell me about their mother, father, grandmother or another relative who has Alzheimer’s disease.
It's hard to find anyone who hasn’t been touched by the disease. In fact, the Alzheimer’s Association estimates there are as many as 5.3 million Americans with the disease and about 11 million caregivers supporting them. And that’s just today.
Reliable estimates suggest that by 2050 those numbers could triple and there could be as many as 16 million Americans living with Alzheimer’s.
And there will be many millions more family caregivers who provide unpaid and often unrecognized support. These are caregivers who will experience the unrelenting, year-by-year deterioration of a loved one with Alzheimer’s that eventually leads to death.
In addition to the human toll, Alzheimer’s takes a huge financial toll on families, the economy and our healthcare system, particularly Medicare and Medicaid. This year, the total annual costs of care for people with Alzheimer’s will be $172 billion; this number will soar to more than $1 trillion in 2050, with Medicare costs increasing more than 600 percent and Medicaid costs increasing 400 percent. Driving these exploding costs is that, by 2050, nearly half of all the people with Alzheimer’s will be in the severe stage of the disease, when more expensive, around-the-clock care is often necessary.
When the numbers get to be this big, tens of millions of individuals affected, tens of millions of families devastated, inadequate facilities and manpower to provide care and support, and a seismic impact on the entire healthcare system, they can be hard to understand. It becomes easy to intellectualize the issue because you have no real frame of reference.
It is when you look at the real human tragedy caused by Alzheimer’s disease that you see things that no one should have to stand for. That includes lives, families and plans totally disrupted; exhaustion and depression; life savings run completely through. People try to put Band-aids on the problem, but they will soon burst. The opportunity is here to act decisively and with forethought now. This is the early warning. We need to get going.
Alzheimer’s is clearly the Number 1 public health challenge of the 21st century and research is the only way to solve this problem. Here are the steps to take:
1) Adequate funding for basic research. Government must ensure that funding for Alzheimer research matches the magnitude of the disease and this is something we just haven’t seen. This year the National Institutes of Health is expected to spend less than $500 million on Alzheimer research. This represents less than one-half of one percent of the annual cost of the disease. In fact, for every $25,000 the government spends on care for people with Alzheimer’s and dementia, it spends only $100 for Alzheimer research. This is the equivalent of sending one life boat to save all the passengers on the Titanic. Government must make an investment in Alzheimer research that proves they understand what’s at stake—for individuals, families, the healthcare system, and the nation as a whole.
2) Clear pathways for the investigation and approval of new medications. For example, currently there is no consensus on therapeutic targets in Alzheimer’s, and we don’t know how far we have to move them. How do we know when someone is better, and what is better enough? There is no agreement on what to measure and how to measure it. We are beginning to take steps to address these questions, but regulators, academics, industry and voluntary health organizations must work together. The Alzheimer’s Disease Neuroimaging Initiative, the Coalition Against Major Diseases, and the Alzheimer’s Association’s Research Roundtable are all good examples of collaborations working to share data and experience in order to overcome shared obstacles to developing new therapies. These are good first steps, but we need more.
3) Greater public participation in clinical trials. Recruiting and retaining participants for Alzheimer clinical studies is now one of the greatest obstacles to developing the next generation of treatments. The immediate need for advances in Alzheimer treatment, diagnosis and prevention has led to an unprecedented call for clinical trial participants.
A couple came up to me recently after I gave a talk about Alzheimer’s at a conference. The husband had been diagnosed with younger-onset Alzheimer’s and both he and his wife wanted to know how they could participate in clinical trials. Both of them were ready, willing and able to do what they could to help end this disease. Honestly, I think a lot more people are ready, willing and able, they just don’t know where to go or what to do to become involved in clinical trials. This information needs to be made easily available and accessible to the public.
The Alzheimer’s Association is critically aware of the information needs of people who want to participate in Alzheimer research studies and a new initiative in this area is planned for this summer.
The only way to control costly outcomes is to prevent them in the first place. We know what lies ahead if we continue on with our present course: more lives lost and an unsustainable financial burden on the nation. We know how to solve it: more Alzheimer research, collaboration among stakeholders, and greater clinical trial participation to get to breakthrough therapies.
CNBC will be covering the 2010 International Conference on Alzheimer's Disease (ICAD) July 10 through 15 in Honolulu.
William Thies, Ph.D., is the chief medical and scientific officer of Alzheimer’s Association.