By Christina Swider
Every 65 seconds, a new patient develops Alzheimer’s disease (a degenerative disease of the brain). There are currently about 5.7 million Americans living with the disease, and it is the sixth leading cause of death in the United States. Clearly, the Alzheimer’s community is a huge community. It is a community not only made up of individuals who have the disease, but also those who have loved ones with Alzheimer’s, caretakers, specialists, and researchers.
On December 31, 2018, President Trump signed the Building Our Largest Dementia (“BOLD”) Infrastructure for Alzheimer’s Act into law. This law authorizes up to $100 million over five years to be allocated to eligible organizations to be used toward building a comprehensive public health model to fight Alzheimer’s. Eligible agencies include organizations who prioritize the following activities: supporting early detection, reducing the risk of cognitive decline associated with Alzheimer’s, improving support to meet the needs of caregivers, reducing healthcare disparities, and supporting care planning for individuals with Alzheimer’s. The new law aims to minimize old attitudes that view Alzheimer’s symptoms as an inevitable part of getting older. It seeks to replace these views with awareness that Alzheimer’s is a serious illness, which results in cognitive decline. To do this, the law proscribes increased education about the disease for both doctors and the public, combined with an increase in social service agencies. By increasing awareness and education about the symptoms of the disease, the law will hopefully result in patients being diagnosed earlier. Early diagnosis is important because it could lead patients to access available treatments, build a team of caretakers, and engage in support services at an earlier stage of the disease.
The law may also have the effect of decreasing disparities in treatment among racial groups. African-American people are twice as likely to develop Alzheimer’s as white people. Hispanic people are one and a half times as likely to develop Alzheimer’s as white people. Delayed diagnosis is also a particularly prevalent problem among African-Americans. The bill is likely to minimize these disparities by mandating that grants be distributed equally based on geographic area and the burden of the disease within sub-populations.
Despite all of the benefits on the face of the bill, as with anything, there are critics. The critics of the bill are concerned that the scope is far too broad. The law is not focused on funding research into causes or cures for Alzheimer’s. Rather, it gives the Secretary of Health and Human Services (“HHS”) the broad discretion to award funds to eligible organizations for the establishment of “Centers” to support patients and their caregivers. The fear is that the Secretary of HHS will choose to distribute the money to the more influential organizations, such as the Alzheimer’s Association, which conducts drug research. Although finding a cure for this devastating disease is, of course, a high priority, it is not the particular goal of this specific law. The law, however, does incorporate research findings. It allows organizations to use the funds for translating research findings into evidence-based programs to support patients and their caregivers. In theory, the goal is to meet the needs of individuals living with the disease, and their caregivers. Hopefully this goal is achieved in the execution of the law.
Another concern with this law is that states will choose not to participate. BOLD Infrastructure for Alzheimer’s Act requires states to provide a thirty percent match for all federal funding. This poses a problem because it is often hard for states to come up with that kind of money, especially for programs what may not show an immediate return for their state. Fortunately, the Secretary can choose to waive the requirement if they determine that the match requirement would “result in a hardship”.
Despite criticism and concerns about this new bill, the BOLD Infrastructure for Alzheimer’s Act is a monumental step in the right direction for individuals battling Alzheimer’s, and their caretakers. After decades of biomedical research for Alzheimer’s, this bill takes the next step toward translating all of that research into practical use that will benefit people every day. Even further, it gives members in the Alzheimer’s community the comfort that they are not alone in the fight against this devastating disease.
Christina Swider is a 3L evening student at Suffolk University Law School. Christina attended Stonehill College for undergraduate school where she earned a degree in criminology and communications. Christina currently works full-time at the Plymouth County District Attorney’s Office and she hopes to practice as a litigator in the Boston area after graduation.
Source Links
https://whyy.org/articles/new-law-may-spur-earlier-alzheimers-diagnoses-in-communities-of-color/