By Joan Sutton Straus
Treatment for Alzheimer's disease?
That doesn't mean that we write the patients off. Yes, the patient can and should receive care: There are drugs that may help ease symptoms, for a limited time. And there are medications available that that will make the patient more comfortable, and make life a little easier for the caregiver -- again, for a limited time.
But there is no drug on the market that will stop Alzheimer's from progressing.
There is no cure: No one who has Alzheimer's will survive.
Bald statements, brutal statements, but the truth...
No matter how wealthy you might be, no matter who you know, where you are, what hospital, which city, which doctor, how energetic you are about your research, nothing will alter the fact that, at the moment, there is no proven effective treatment, no cure, no recovery, from Alzheimer's disease.
And, as Nancy Reagan so poignantly said, it is a long goodbye. The journey from diagnosis to death can be years long. Years during which families must deal with very real emotional and financial stress.
The taxpayer too shares the burden. Alzheimer's care in the United States now costs $200 billion a year. There are some who believe that when the baby boomers reach Alzheimer's-age, the costs of their care will break the health care systems in both the United States and Canada.
In the December, 2013, AARP Bulletin, Senator Olympia Snow, the leading Republican on the Senate Aging Committee commented, "$142 billion of the cost of Alzheimer's care comes from Medicare and Medicaid, and yet we invest a measly $520 million in research into Alzheimer's. That makes no sense whatsoever."
If research money was allocated according to the burden imposed on individuals and taxpayers, Alzheimer's would be, if not at the top of the list, very near it. But research money is not allocated according to need or burden. In a National Institute of Health (NIH) paper on Funding Levels and Burden of Disease (Feb 24, 2011), the writer noted, "It is unclear why particular conditions remain under- or over-funded, relative to disease burden." The writer lists strong political influences, charity revenue that leads to group advocacy, lobbying, private resources and the priorities of elected officials, as some of the factors that influence funding choices.
The vast amounts of money made available to Breast Cancer and AIDS is a good example of how effective political pressure and public awareness can be. Nancy Reagan, Rita Hayworth's daughter, Princess Yasmin Khan, the Lauder families, Mel Goodes, the former CEO of Warner-Lamber, and the Alzheimer's Association are among the voices urging more research. All the families touched by Alzheimer's need to join them in speaking out, in insisting, attention must be paid.
Even so, given the millions of men and women diagnosed with AD, and the epidemic that will be the result of the baby boomers coming to Alzheimer's age, one wonders why the pharmaceutical companies with all their expertise have not developed better drugs to treat a guaranteed market. Part of the answer can be found in economics. Forbes magazine (August 15, 2013) estimated that it costs more than $6 billion to bring a drug to market and to make the economic picture even worse, 95 per cent of experimental meds fail.
I suspect that there is a certain amount of age-ism at work as well. The popular view of Alzheimer's is that it is an old person's disease and some people might say "they are going to die anyway, why put resources into that?" Age is indeed a major factor in contracting Alzheimer's, but everyone who gets the disease is not old, and even those who are old surely deserve a better ending.
When my husband was diagnosed in 2006, there were two drugs on the market that we were told might slow the progress of the disease. He was prescribed one which, at that time cost $600 for a three months supply in the United States. Even if you could afford it, that's a lot of money to pay for something that might or might not work. Certainly it was priced way beyond most families.
Eventually, a generic version came on the market making it more accessible. My husband started taking it and, as his progress through the various stages was slow, I have to assume that it had some effect. When the second drug was added, he became so agitated and distressed, that our doctor eliminated it from the protocol.
Today, there are three drugs that are commonly prescribed in the early stages of AD. One of them, Aricept, has also been approved by the FDA for treatment of moderate to severe Alzheimer's, along with Namemba.
What is in the pipeline?
In its 2011-2012 Alzheimer's Disease Progress Report, the NIH listed three areas of research: reducing Beta-Amyloid, Targeting Tau, and Supporting Neurogenesis. For more detailed information on these, I suggest that readers consult the NIH website. Details about clinical trials can also be found on that website, as well as from The Alzheimer's Association, or the neurology department of your local hospital. But, important as these studies are, they do not offer quick solutions. It takes from 10 to 15 years for a drug to pass through all the various stages necessary before it can be made available to the public.
The Alzheimer's Drug Discovery Foundation, founded by Ronald and Leonard Lauder, where I am on the Board of Overseers, is one of the largest sources of funding for Alzheimer's research. The emphasis of its scientific committee, headed by Dr. Howard Fillit, is research into repurposing existing drugs as potential Alzheimer's treatments. One of the most dramatic examples of how a drug created for one thing can have a benefit in another area can be found in the story of Viagra. That began as a drug that was being tested for angina, a heart condition that constricts the vessels that supply blood to the heart. The drug wasn't effective, and the company (Pfizer) was about to abandon it when patients started to report a significant side effect -- the men in the trial were having erections. Needless to say, Viagra is now a much prescribed, and highly profitable medication.
So, is there an Alzheimer's Viagra? In my next blog, I will report on two clinical trials involving drugs already in use that offer some hope.