Funding Anyone?

Alzheimer's funding, alzheimer's disease

Last month I was driving to work in the early hours of the morning and I got angry. I was listening to a story on NPR about how in the 2003 State of the Union address, President George W. Bush committed 15 BILLION dollars to help fight AIDS world wide. I commend him and think that those efforts a decade ago are being felt now in the accomplishments seen in the fight against AIDS. Yes, I understand there are still people dying from AIDS, but the numbers are down. People are able to live productive, relatively healthy lives after a diagnosis. There is now hope, where there once was none. Truth be told, the US has spent more than $50 BILLION worldwide since that speech on the global AIDS fight.

Do you know how much our government has budgeted right now for Alzheimer’s Disease research? $480 MILLION. That is a long way from a billion and certainly an even longer way from $15 BILLION, let alone $50 BILLION.

Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care. Are you getting the picture here?

WHY CAN’T WE COMMIT THE SAME AMOUNT OF MONEY FOR A DISEASE THAT HAS NO CURE, IS GUARANTEED TO BANKRUPT NOT ONLY OUR COUNTRY BUT DOZENS OF OTHER COUNTRIES AND DRAINS FINANCES, EMOTIONS AND FAMILIES FOR YEARS AND DECADES?

It is hard to compare apples to apples. You never want to have your words misunderstood. I am not, in any way saying we shouldn’t support the fight against AIDS or any other disease. If you are someone who is fighting that fight or losing a family member to it, the last thing you want is some blowhard talking about cutting funding and moving it to another worthy cause. I am not asking for any cuts to be made for other disease research.

They are all worthy causes.

alzheimer's disease, funding for research

My mother suffered a heart attack not that long ago. I was scared. I was completely taken by surprise and rushed to be by her side. But after a few days she was home, taking it easy and a year later she is enjoying celebrating 50 years of marriage to my father. I still worry and I still harp on her about taking care of herself, but somehow it is so completely different than watching Jim succumb to the overall evils of Alzheimer’s Disease. She was able to go back to her “normal” life and not lose any mental or physical capacities. There are not financial implications. There are no long term plans needed. She has a warning, she has doctors orders, she has hope.

My father is a prostate and skin cancer survivor many times over. Again, with each diagnosis, surgery and waiting game, I have gone through an array of emotions, which always includes lots of worrying, crying and plain terror. So far, he has remained cancer free, only needing large chunks of skin removed every couple of years. His prostate cancer seems to be in check. Over all, I think that having these scares has made me that much more grateful to still have both of my parents in my life. I am thankful each and every day they are here to help me because they are, at times, my saving grace and my shelter from this storm.

Cancer and heart disease run in my family. Both sides. 3 out of 4 grandparents have succumbed to one form or another of cancer. 3 cousins have been diagnosed, 2 are still with us; Because of advances in treatments which came directly from research. I have lost family members that I loved dearly to cancer. I raised over $4800 while training for and eventually running a half marathon for the Leukemia and Lymphoma Society in San Francisco. I dedicated that run to my cousin Jay, who passed away much too young, at 14, of leukemia.

I have seen the fight and the inability to win. But along the way, I believe the difference is in the ability to have hope. To have the chance to fight. The chance to win. With Alzheimer’s Disease, victims are not given any of those things. You are given a diagnosis and sent home to do research or not. To cry, or not. To tell others, or not. To raise awareness, or not. To see the doctor in 6 months, or not. To make financial plans, or not. To seek spiritual help, or not. There are NO rules, guidelines, or definitive game plans. You are left to your own devices.

I am beyond grateful for the fact that others before me took up other causes that needed research, funding, awareness and cures.  People that lost loved ones. People that were hurt, angry, sad, lost and eventually found by their hard work and dedication to a cause that had taken from them someone that could not be replaced.

Can anyone explain to me why we can’t do the same for Alzheimer’s Disease? Why can’t more people speak up? Why can’t more funds be allocated and disbursed? Is it going to take another Rock Hudson, Elizabeth Taylor and marches in the streets?

The problem arises with the simple fact that Alzheimer’s Disease isn’t contagious (though it can be hereditary).  It affects “old people” (tell that to the thousands of Younger Onset patients). No children are affected (except for the children and grandchildren that are scarred for life by witnessing the Long Goodbye).There doesn’t seem to be a lot of outrage at the lack of answers or cures.

Well, there is outrage with a few of us. I am mad. I am mad that there are people that can speak up and don’t. I am mad that people whisper and try to hide what they are going through. I am mad that frivolous things are funded but more research and programs to help families dealing with this horrible plight are not. I am mad that there are so many of us who have no help or hope or support.

Which would you rather be diagnosed with? Cancer, AIDS, Heart Disease or Alzheimer’s Disease? 3 out of those 4 have treatments and survivors. 1 does not.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

10 Responses to “Funding Anyone?”

  1. Allan says:

    Karen, you are “right on.” Let me add that *** I would be fine with a “temporary” increase to the current level of spending for HIV/AIDS ($3.5 Billion) to be reduced the year after the FIRST “Alzheimer’s Survivors Walk”!

    I’ve stopped ASKING my members of Congress (2 Senators and 1 Representative) and started DEMANDING!! It will take many more SHOUTING to be heard.

  2. Rina Morle says:

    Please forward info to me, my Dad has Alzheimer’s ,
    I would like to get all my family and friends to sign a petition so we can share in getting more funds.

    • Allan says:

      Rina Morle – A hundred personal letters written by constituents have FAR MORE impact on a Member of Congress than a petition with a thousand signatures. It takes more time to write a letter. Members of Congress know that. It takes no effort to simply sign a petition (and how many “signatures” are simply bogus?). Write or call your US Senators and your Representative – and have your friends and relatives do the same!!

    • Karen says:

      Rina,
      Thank you for wanting to help. Please read my post, The Ask and click on the links located there to find your representatives and for more information.

  3. Kim says:

    An EXCELLENT! post. I will be sharing.
    Thanks

  4. Melissa says:

    It’s astounding, what you say:
    “Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care….” Yet, there’s not more money spent on research. Crazy. Keep up the good work, Karen. Thank you.

  5. sherri williams says:

    You are so right and the problem is no one knows what we are going threw or they don’t care until it happens to them. My mother-in-law died in the last stages of Alzheimer’s Disease and now I am facing the life with her son with early onset AD and I don’t know where to turn for help. People don’t believe you when you tell them the things that are happening in your life until they see the changes for themselves. Where is the money for early diagnosis? Where is the financial help to keep a roof over our heads, pay for medical help, or keep food on the table? I am sure that if any of us that is looking after a loved one with AD would do anything we could to take the disease away and restore our lives. I wouldn’t wish this on my worst enemy.You would think they would learn that $1 spent to research/prevent saves $100 or more. This is just basic math!

  6. Wendy says:

    As a caregiver we are not given the luxury of being tired, but we are. I really admire those who are dealing with this disease in their lives and can still find the time and energy to raise money and awareness. I will be grateful if I can get through school and find a job to supplement my husband’s social security. I’m tired and wish I had some fight in me to do those other very important things. Thank you Lord for those that do! Perhaps I will have the time and energy someday…

    • Karen says:

      Wendy, you can call your representatives or send them handwritten notes. It takes just a few minutes. We need you and I believe you can do this. If you need help, ask your local Alzheimer’s Association to help you. They will. Thank you!!! Stay strong and remember to take care of you.

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