Friday, April 18, 2014

Changing the Cause of Death...

The cause of death on Dad's death certificate is still bothering me.  It's actually doing more than that... it brings me to tears of frustration and hurt every time I think about it.  I really thought I could let it go, but it crushes me to know that he suffered from this terrible disease for over 9 years and he is technically not a statistic.  All the hard work we do to make a difference and to find an eventual end to this disease is all because of him and for the millions of families dealing with this disease every day.
When I was in D.C., a friend of mine and fellow Alzheimer's Advocate shared with me that she is fighting to have her Mother's cause of death changed.  I had already come to tears that day thinking about it and felt that it was consuming me because there was nothing I could do.  She has changed my thinking and has offered to help me.  
She sent so many resources to her Mother's Doctor including a link to death statistical data tables from California Dept of Public Health proving that Alzheimer's Disease IS a cause of death and an article similar to the one I shared a few blog posts ago that stated Alzheimer's kills more people than previously thought because the disease is under-reported as cause of death.
I feel like I need to prepare for my day in court in order to convince this doctor, who doesn't even know me or my Dad, to change the cause of death.  

First on my list was to call the Mortuary because they will need to be involved at some point.  The woman was extremely helpful and didn't seem to think I would get much push-back from the Doctor (it sounds like people request changes on the death certificates often and that this specific doctor will usually amend it).  She actually says that many people request that Dementia be REMOVED from the cause of death!  I can't believe that.  The stigma of Alzheimer's still exists.  Birth and Death records are pretty powerful, I guess.  They become History.  They are always the first thing you find when you dig into your ancestry. 

Our plan is this:  She put in the request today and will hear back by Monday or Tuesday, but will call me Tuesday no matter what.  Could it really be this simple?  I don't know....

If that doesn't work, I found out that the Doctor's office is 1/4 mile from my house, so I can always stage a sit-in.  Just kidding... sort of.  Let me just put it this way... I plan to be persistent on the matter.

Sunday, April 13, 2014

Alzheimer's Association Advocacy Forum in D.C.

My Trip to D.C. was everything I hoped it would be and more.  The first two days were spent 'training' for our final day on Capitol Hill.  There was an Advocate or Ambassador from all 50 states and in the case of more populated ones like California, there were even more.  I think our chapter (greater LA area) brought 23 people .  Total there were almost 1000 people there.  Two women in our group just lost their mother to the disease and then there were others who were personally battling the disease themselves.  We met a Father, age 51, who was diagnosed at age 47 with early on-set Alzheimer's.  His 18 year-old son and wife were with him and this was their 3rd year participating in the Forum. 

The emphasis this year was how we desperately need more support and funding from the Government to combat this disease.  Our collateral very clearly points out how Alzheimer's is helping to bankrupt our country -- the graphs and charts say it all.   We presented this collateral to our Congressman or Staff members, walked them through the handout, and then someone would share a personal story (I shared my story in all three meetings because it was the most powerful out of our group) and then we would ASK for what we need.  My spiel went something like this:

If there is one thing that you take away from this meeting today it's this:  Alzheimer's is the most expensive disease in the country with costs set to skyrocket in the years ahead.  Most of those costs are from Medicare and Medicaid.  1 in every 5 Medicare dollars is spent on someone with Alzheimer's.  
This year the disease will cost us $214 Billion with $150 Billion coming from Medicare and Medicaid.  Only 0.25% (a quarter of 1%) is currently committed to research.  That 0.25% is the ONLY way to reduce the costs.  
The Director of the National Institute of Health, Dr. Francis Collins, testified before the Senate Appropriations Committee in February and said "We are not, at the moment, limited by ideas. We are not limited by scientific opportunities.  We are not limited by talent.  We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take."  
The good news is we know that smart government investments in research do work, for example, Cancer, HIV/AIDS, Cardiovascular...  We need that kind of investment to bring the costs of this disease down and to find a way to prevent, slow and cure Alzheimer's. 
(I then shared my story, especially how stressful the financial impact was on our family and then brought it back around to our ASK)
What we are asking for today is $200 million in funding for Alzheimer's research in Fiscal Year 2015.  Will you sign and send a letter to the Appropriations Committee supporting this?  (we got a yes in two meetings and a probably in the third meeting).

Our second ask is this:  in 2010 the National Alzheimer's Project Act (NAPA) was passed and in that Act there are timelines and milestones of how we are going to beat this disease with a goal of effectively treating and preventing Alzheimer's by 2025.  HOWEVER, the plan does not include a projection of the level of funding necessary to reach this goal.  Last week, the Alzheimer's Accountability Act was introduced which would require the scientists at the National Institute of Health to submit an annual Alzheimer's research budget proposal directly to Congress and the President.  This will inform Congress of what is needed to reach our goal of 2025 so that they can make an educated decision when deciding how much funding goes toward Alzheimer's research each year.  Will you be a Co-Sponsor of this bill?  (again we got a yes in two meetings and a probably in our third meeting.)

It sounds like a lot of overwhelming information but we were trained so well and the collateral was put together so precisely.  Our presentations were very clear and we didn't get a lot of clarifying questions.

The next 24 hours were spent exploring D.C.  The city is so clean, so safe, and so inspiring.  I can't wait to go back with Blake and Emry some day.