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| Linda Fisher and Congresswoman Hartzler |
What is it that brings me back to
Washington, D.C., year after year? It’s not the cherry blossoms. It’s not the
Smithsonian or the monuments. It’s not the food, although after a meal with my
besties—Jane, Kathy, and Sarah—at the historic Old Ebbitt Grill, I created a
hashtag: #eatingourwayacrossDC.
The reason I come to D.C. every year
is to join with like-minded advocates who are good and tired of the heartbreak
of Alzheimer’s. We think it’s darned time to find a cure.
Each year we are joined by an influx
of first-timers. The Alzheimer’s Association and those of us with the multiple
stars on our badges do everything we can to make sure they are prepared for the
Hill. Once they have the information and the “collateral” they put on their
comfortable walking shoes and head to the Hill where many voices will share the
same message.
I believe 1,300 purple sashes make
quite a statement on Capitol Hill. As I went from appointment to appointment on
Hill Day, we were the most visible group around.
Advocates from across the U.S. visited
the offices of their senators and representative. The 23-member Missouri
advocates first appointment of the day was a coffee at Senator Roy
Blunt’s office.
We boarded the first bus leaving the hotel and arrived at the Hill in time for
the 9:00 appointment. That is, it would have been time enough except for the
long line of people trying to get through security. As we stood in a non-moving
line, we were directed to a different door so that we arrived in the nick of
time. After a photo with the Senator, we visited with his health aide, Desiree Mowry.
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| Desiree Mowry and Betty Johnson |
After our visit with Senator Blunt,
we split up. Some had house appointments and had to travel to the house side of
the Capitol. Others of us, the “A” group (we referred to ourselves as the
A-Team) moved to the Hart building where we would meet with Emma Kenyon, Senator
Claire McCaskill’s legislative aide. After that visit, several of our group
headed home, but I had an appointment with Congresswoman Vicky Hartzler in the
afternoon.
Our “ask” this year was two-fold.
First, we asked for a $414 million increase for Alzheimer’s research. This is
the amount that scientists at the NIH submitted as a “Bypass Budget” proposal.
Based on the Alzheimer’s Accountability Act passed in 2015, this is the amount
to keep us on track to prevent or develop an effective treatment by 2025.
The second ask was for co-sponsors
for PCHETA (Palliative Care and Hospice Education and Training Act). PCHETA (SB
693, HB 1676) is so important that more than 40 groups are working toward
passage. Nursing home residents who receive palliative care at the end of life
are 15 times less likely to die in a hospital. Palliative care reduces
emergency room visits and hospitalization. This Act would (a) increase the
palliative care and hospice workforce by establishing training programs, (b)
launch a national campaign to inform patients, families, and health care
professionals about availability of services, (c) enhance palliative care
research.
Add your voice to our voices. Email,
write, call your senator and representative to support research funding and
PCHETA.
For $20, you can join the Alzheimer’s
Association’s sister organization AIM (Alzheimer’s Impact Movement). AIM
(1) advocates for legislation to advance research and enhance care and support
for those affected by Alzheimer’s, (2) supports the re-election of our
Congressional champions, and (3) speaks on behalf of the Alzheimer’s community
when 501(c)(3) organizations like the Alzheimer’s Association must remain
silent. Join AIM at the link below using my referral code.
Just a few minutes of your time can make a lifetime of
difference for three of your fellow Americans who developed Alzheimer’s in the
time it took you to read this article.
Copyright © April 2017 by L.S.
Fisher
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