The Anti-Alzheimer’s BOLD Act Isn’t. But It Could Be A Step In The Right Direction

Last week, President Trump signed into law the BOLD Infrastructure for Alzheimer’s Act, a measure aimed at building a public health model to fight Alzheimer’s disease and other dementias. The law would authorize up to $100 million over five years to improve public education, support health and social service agencies’ dementia initiatives, and collect and disseminate data about cognitive decline.

There is a very important idea behind this new law: Helping state and local governments, Indian tribes, and the federal government work together to promote dementia education and caregiver support, as well as collect better data on these diseases. But BOLD’s unusual focus on public health, it’s extremely broad mandate, and questions about the adequacy of funding suggest there may be far less to the law than meets the eye.

It gives enormous discretion to the Secretary of Health and Human Services to decide which programs get the money. That worries advocacy groups that focus on the needs of people with dementia and their families. They fear they will be pushed out of the way by more influential organizations such as the Alzheimer’s Association, whose focus is primarily on funding drug research. Past experience with federal dementia initiatives gives them good reason to be concerned.

Will states participate?

BOLD’s benefits also may be limited because states are required to provide a 30 percent match for any federal funding. The Secretary can waive that requirement if he determines it would “result in hardship” but it often is hard for states to come up with matching dollars, especially for programs that don’t show an immediate payoff or, like this, are funded for only a limited period of time.

The law gives authority for operating this initiative to the Centers for Disease Control, which has lots of hands-on experience with building public health programs. As it happens, CDC already runs an Alzheimer’s Disease and Healthy Aging Program.

And, happily, the law gives attention to the need for caregiver support and public education as well as disease “interventions” which could mean, well, almost anything from indirect funding for drug research to improving caregiving practices.

The public health choice

Building a public health framework is in some ways a curious choice. Normally, public health initiatives are aimed at changing the behavior of consumers at a community level or reducing environmental risk factors such as assuring safe drinking water. Public health   often focuses on infectious diseases. For instance, the CDC encourages people to get flu shots or measles vaccines. Or it attempts to improve community health by encouraging people to change their lifestyles. For instance, it has initiatives to reduce smoking, alcohol or opiod abuse, or obesity.

But with BOLD I worry about the square-peg-in-the-round-hole problem. Dementias certainly are not infectious. And if they are affected by behaviors, the connections are poorly understood, at least for most forms of the disease. We know quite a lot about vascular dementia, often caused by strokes that are preventable by changes in lifestyle. But we know much less about what activities or environmental factors trigger Alzheimer’s. And we know even less about behavioral or environmental causes of other dementias such as Lewy Body disease.

So while calling dementia a public health crisis sounds like a positive call to action, it isn’t clear how such a framework will lower the risk of these brain diseases.

A modest shift from drug research

Still, acknowledging the needs of those with dementia and their family members is important. And it is a change from most previous federal initiatives, which have focused on lavishing public money on drug research and largely ignored those who already have the disease and their families.

Last year, the National Institutes of Health funded $1.9 billion in Alzheimer’s research, and Congress gave it more than $400 million more this year. The total of more than $2.3 billion represents about 5 percent of the total NIH budget. Yet despite this massive increase in funding, there remains no drug treatment or cure for Alzheimer’s, to say nothing of dozens of other dementias.

And about money. While supporters promote BOLD as a $100 million initiative, the funds will be spread over five years. And Congress still must separately appropriate the money before anything can be spent. And if this law is typical, the program will receive much less than the maximum.

Still, those living with dementia and their families desperately need support, including caregiving training, respite care, and better information about managing these diseases. If used properly, the BOLD Act could take some first steps towards those goals.

 

By |2019-01-09T11:00:47+00:00January 9th, 2019|dementia|0 Comments

Leave A Comment