a trip to Capitol Hill…

I visited Capitol Hill yesterday — I was advocating for the Alzheimer’s Association with the chapter staff I used to work with back in California.  This was my first advocacy effort in DC — overall it was my fourth advocacy effort with the Alzheimer’s Association.

What was I advocating for this time you ask?  That’s a great question — a question I have the answer to!

We had two very simple asks this year, of which neither were asking for any amount of funding whatsoever.  That in itself was a first for me — most every year there had been at least one ask that was tied to a need for funding.

This year, our asks were simple — first, it was to hold accountable the NIH to the promises that they made.  Telling the research scientists that we need xx amount of dollars hasn’t worked, not surprisingly.  SO…this year, we wanted the scientists to review what THEY thought the costs would be to help effectively research.  After reviewing the NIH should be going to congress saying that THEY need xx amount of dollars.  Makes sense right?  You said you would look into the allocations — so be true to your word and do just that.  If the allocations are off, ask Congress to adjust them accordingly, if you they they are fine the way they are (which they aren’t btw — which is my opinion) then let the allocations stay as they are with an explanation as to why they are staying.  History has shown…you put money and support into the research, the mortality rate of big diseases goes down.  Cancer — given Billions (notice the B) of dollars…death rates drop.  Heart Disease — given Billions (again, the B) of dollars…death rates drop.  AIDS/HIV — given Billions (I’m sensing a trend here)…death rates drop.  Alzheimer’s Disease — given Millions (huh?) of dollars…death rates increase by 66%.  Alzheimer’s is in the top ten of leading causes of death…it’s the only one without a cure, without a preventative measure, without hope…past efforts show that we CAN get there.  It appears it just isn’t important enough yet — hasn’t been a big enough spotlight — hasn’t affected that ‘right’ person.  (I feel terrible saying that last part…but that is just how I feel)

The second ask, less simple but EXTREMELY important — asking state representatives to support the HOPE act.  Stressing the importance and necessity of early diagnosis, physician education, caregiver education and physician documentation.  So many different things there — let me break it down to the brass tacks.

  • Early Diagnosis:  This is a no-brainer (no pun intended).  The earlier that a person receives a diagnosis of ANY kind, the better their chances to have a better quality of life — REGARDLESS of what disease it is that they have.
  • Physician Education: Going hand in hand with the early diagnosis — Physician’s knowing about the signs, symptoms and treatments that are available of the disease is a must.  Simply saying “I think it’s Alzheimer’s but there is nothing we can do” is no longer acceptable.  It needs to be a priority that our doctors, nurses, surgeons, dentists — everyone and anyone that has any interaction in a medical event know even the BASICS about the disease.
  • Caregiver Education: Another no-brainer.  When you have a baby born with special needs — parents are not just given the news and sent home without any education or any information.  So why is it that when a spouse is told that their spouse has Alzheimer’s they are then sent on their merry way (not so merry really) and left to figure out on her own the next steps (here’s hoping she even KNOWS there are next steps!).  Persons with Alzheimer’s can be cared for at home – extending their lives in the comfort of their own home — for up to 2 years following a diagnosis IF the caregiver is given at least 6 educational (and emotionally supportive) sessions on the basics, what to expect, how to handle and overall resources that are available to them.  Let’s spend the $600 per caregiver to save the $100,000 it would cost per year to have a person with Alzheimer’s living in a facility (not to mention the Medicare and Medicaid savings!).  Again — it seems like another no-brainer.
  • Physician Documentation:  This one is one of the harder ones for me to fathom.  Why we have to advocate for our physicians to DOCUMENT our files with diagnoses is beyond me.  Paint me as being a pain in the ass — but I expect that my Doctor would be compelled to ensure that any other medical attention that I were to get or need would also include in my history a diagnosis of dementia or Alzheimer’s.    Most persons with Alzheimer’s have other medical issues as well — as do most older adults, not surprising right? With multiple medical issues comes multiple medications.  simple — makes sense.   I feel that our pharmacists are getting the crap end of this stick here too.  With all these different medications — they are then left solely responsible for ensuring that these medications don’t interact in a fatal way…not fair considering they have hundreds of other families, individuals and basic customers to tend to.  Why not require that our Doctors use that pen they use to write up prescriptions to write up a simple word or two that would INCLUDE a diagnosis of Alzheimer’s.

My efforts yesterday were uplifting, disheartening (yes, I did mean DIS), frustrating, inspiring, empowering, angering and overall awesome.  I enjoy getting to tell my story (albeit it takes me at least two times to really get it down to being the short – emotion invoking story it really is).  My story is a story that shows that this disease isn’t going away — in fact it’s coming on faster, stronger and it’s not showing any signs of slowing yet.

I’m stepping off the soap box for a wee while — but I still want to encourage people to send $1, $5, $20 — whatever you can afford — to the Alzheimer’s Association (your local or the national office in Chicago) to help speed up the research process.   Let’s give another generation a chance to NOT lose a grandparent, an aunt, uncle, brother, sister or worse a parent to this disease.

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