A huge thank you to both U.S. Rep. Billy Long and Sen. Roy Blunt for co-sponsoring the legislation in the House and Senate for Improving HOPE for Alzheimer’s (S. 880 / H.R. 1873).

Alzheimer’s and related dementias are a public health crisis that we can no longer afford to ignore, and many members of Congress, including several of our representatives from Missouri, are “on board” to address this crisis.

Every case of Alzheimer’s and related dementias is different, and care that meets the needs of these wonderful patients reflects this challenging symptom variety. 

My mom was diagnosed some 10 years ago at 65 with a “mild case of dementia” that slowly, over time, evolved into a diagnosis of Alzheimer’s disease. Without the help of the Alzheimer’s Association and our local area agency on aging, SeniorAge, we were a hopeless arrow without the feathers as far as how to get the best help for her. 

With the help of these two agencies, we were able to keep mom in her home for at least an extra year, improving her quality of life (and saving the taxpayers money in the process). 

In the fall, we had to place her in a memory unit of a local nursing home, where she is in final stages of the disease today.

Legislatively, the HOPE for Alzheimer’s Act worked its way through three Congressional sessions before it became obvious to CMS/Medicare that there needed to be a new code to reimburse costs for medical consultations regarding care planning upon a diagnosis of Alzheimer’s.

The Billing Code #99483 was implemented by CMS/Medicare in late 2016.  However, few medical practitioners were made aware of it, so it was rarely used, and care planning after diagnosis did not happen as the HOPE Act had intended. 

At the time, my family had not heard of its provisions.

Improving HOPE for Alzheimer’s will require CMS/Medicare to educate/train appropriate medical staff about the code and encourage its use to help families impacted by this horrible disease to learn about resources they can access and the important life considerations they must address: financial, legal, care planning, safety, etc. 

It is so critical in Alzheimer’s and related dementias for care teams to start planning early — at diagnosis — in these areas while the patient can best offer input and guidance and so that the family and friends can build a support structure that undergirds their care effort throughout the long haul of treatment. The training this bill supports gives confused families guidance that they desperately need when they need it.

Only six months into this 116th Congressional Session, there are now 33 members of the Senate and 59 members of the House as co-sponsors of this legislation.  Many thanks to U.S. Rep. Luetkemeyer for co-sponsoring Improving HOPE for Alzheimer’s, as well.

Thanks to our Congressional representatives and Alzheimer’s advocates from Missouri, we have made amazing progress in funding for Alzheimer’s and related dementias at the National Institutes of Health, as well as implementing NAPA, the Alzheimer’s Accountability Act, and the HOPE for Alzheimer’s Act. 

Mark Applegate is an Alzheimer's Association Greater Missouri Chapter advocate and a resident of Bolivar.

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