June is Alzheimer’s Aware­ness Month: Work­ing to sup­port those strug­gling and find a cure

The Saratogian (Saratoga, NY) - - OPINION - By U.S. Rep. Elise Ste­fanik

June marks the be­gin­ning of sum­mer, a time to en­joy nice weather and spend more time out­doors with friends, fam­ily and neigh­bors. But it also marks Alzheimer’s & Brain Aware­ness Month, a time that we are re­minded of the mil­lions of Amer­i­cans — in­clud­ing many of those same friends, fam­ily and neigh­bors liv­ing with this dev­as­tat­ing dis­ease, or serv­ing as a care­giver.

There’s a com­mon mis­con­cep­tion that Alzheimer’s is a dis­ease that only af­fects older Amer­i­cans. And while 1 in 3 se­niors will die with Alzheimer’s or an­other form of dementia, the truth is that every­one is at risk of de­vel­op­ing Alzheimer’s, re­gard­less of age.

In fact, ac­cord­ing to the Alzheimer’s As­so­ci­a­tion of the more than 5 mil­lion Amer­i­cans cur­rently liv­ing with the dis­ease ¬ nearly a quar­ter of a mil­lion are younger than 60.

Whether an Alzheimer’s di­ag­no­sis comes be­fore 60, as it has for many of my con­stituents, or af­ter, its im­pact is no less dev­as­tat­ing. Un­for­tu­nately, it is pre­cisely be­cause the dis­ease is so hard on fam­i­lies and loved ones that many pre­fer not to talk about it.

Un­der­stand­able as this may be, how­ever, we can­not help the mil­lions across Amer­ica liv­ing or car­ing for some­one with Alzheimer’s un­less we speak up and share our sto­ries. This is why I, and so many oth­ers, have been in­spired by Bella and Will Doolit­tle’s award-win­ning se­ries in the Post Star: Alzheimer’s Chron­i­cles with Bella Doolit­tle. Will is a jour­nal­ist whose wife, Bella, was di­ag­nosed with younger on­set Alzheimer’s 2 and a half years ago, and they have been chron­i­cling their jour­ney since Novem­ber of 2017. Will and Bella have proved that shar­ing your sto­ries with your com­mu­nity and friends may not al­le­vi­ate the pain and frus­tra­tion of the dis­ease, but it can be incredibly in­for­ma­tive for other fam­i­lies fac­ing sim­i­lar chal­lenges.

As the U.S. Representa­tive serv­ing the peo­ple of New York’s 21st Dis­trict, I rec­og­nize that I have a unique op­por­tu­nity to help the 400,000 New York­ers liv­ing with Alzheimer’s and their more than 1 mil­lion un­paid care­givers — in­clud­ing the 200,000 across Amer­ica who are liv­ing with younger-on­set Alzheimer’s.

Specif­i­cally, I urge my col­leagues in both cham­bers of Congress to sup­port the passage of the Younger-On­set Alzheimer’s Dis­ease Par­ity Act, a bi­par­ti­san bill I was proud to sup­port as an orig­i­nal cospon­sor with Kath­leen Rice (D-NY-4) and Pete King (R-NY-2), and David Trone (D-MD-6); and the Se­nate bill by Sens. Su­san Collins (R-Maine), Bob Casey (D-Penn.), Shelley Moore Capito (R-W.Va.) and Doug Jones (D-Ala.).

En­dorsed by the Alzheimer’s As­so­ci­a­tion and its ad­vo­cacy arm, the Alzheimer’s Im­pact Move­ment (AIM), this bill would en­sure every­one liv­ing with younger-on­set Alzheimer’s will have ac­cess to the same, high-qual­ity care that is cur­rently avail­able to the more than 5 mil­lion aged 65 and older who are also liv­ing with this dev­as­tat­ing dis­ease.

The law would achieve this by amend­ing the Older Amer­i­cans Act (OAA) to serve in­di­vid­u­als aged 60 and younger who are liv­ing with youngeron­set Alzheimer’s dis­ease or other de­gen­er­a­tive dis­eases.

Un­til that happens, how­ever, only those over the age of 60 will re­main OAA-el­i­gi­ble, mean­ing the grow­ing num­ber of Amer­i­cans who are di­ag­nosed with early-on­set Alzheimer’s in their 30s, 40s and 50s will not have ac­cess to crit­i­cal OAA ser­vices that many of Amer­ica’s se­niors liv­ing with the same dis­ease have grown to rely on, such as nu­tri­tional pro­grams, in-home ser­vices, trans­porta­tion, le­gal ser­vices, el­der-abuse pre­ven­tion and care­giver sup­port.

Ear­lier this month, the Se­nate included key pro­vi­sions of the Younger-On­set Alzheimer’s Dis­ease Act into its draft reau­tho­riza­tion lan­guage for the OAA. This is was an en­cour­ag­ing first step but more work re­mains.

At the same time, I can also take de­ci­sive ac­tion against Alzheimer’s by urg­ing my col­leagues across the aisle to join me in sup­port­ing a $350-mil­lion fund­ing in­crease for Alzheimer’s re­search at the Na­tional In­sti­tutes of Health (NIH), where — de­spite his­toric in­creases since the passage of the 2010 Na­tional Alzheimer’s Pro­ject Act — re­searchers re­port cur­rent fund­ing falls far short of what’s needed to en­sure the dis­ease no longer ranks as the sixth lead­ing cause of death in the U.S.

More re­search fund­ing also means that re­searchers will have the tools and re­sources they need to dis­cover break­through treatments and, one day, a cure.

This June, I hope you are able to spend qual­ity time with your friends, fam­ily, and neigh­bors. I also hope you use that time to share your ex­pe­ri­ences around Alzheimer’s, and join me in sup­port­ing the fight to end Alzheimer’s.

U.S. Rep. Elise Ste­fanik is a Repub­li­can who has been rep­re­sent­ing New York’s 21st Con­gres­sional Dis­trict since 2015.

U.S. Rep. Elise Ste­fanik

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