Are all diseases treated equally? – I say no!!!! Alzheimer’s far behind all others

I recently attended the Alzheimer’s Advocacy Forum in DC. I also heard our message that we need to ask for additional funding, but our goal is not to take from any other diseases that are funded by the National Institutes of Health (NIH).

In some regards, I disagree with this! I know my opinion will not be shared by many, if any!

Fact:

Alzheimer’s is the costliest disease in the country! (Medicade/Medicare and family funded)

$140+ Billion paid by Medicaid and Medicare and only $483 Million in research dollars last year. If we invested $14 Billion a year towards Alzheimer’s research, that would only be 10% of what the federal government spends on Alzheimer’s care. I think that is a good investment to reduce our future expenses.

“… Alzheimer’s is the most expensive malady in the U.S….”

“… skyrocketing at a rate that rarely occurs with a chronic disease.”

“… exceeding that for heart disease and cancer…”

In the 2013 budget, there is an additional $80 Million in President Obama’s budget. We also heard at the Alzheimer’s Advocacy Forum that the NIH will add an additional $40 Million.

NIH Research (yearly budget) – 2012

  • Cancer around $6 Billion
  • HIV/AIDS around $3 Billion
  • Hearth Disease around $2 Billion
  • Diabetes around $1 Billion
  • Alzheimer’s around $484 Million

It costs the US more than $200 Billion to care for individuals with Alzheimer’s, but we only spend $483 million on research for a cure.

A great image from USAgainstAlzheimer’s!

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If the federal government is not going to make the NIH budget pie bigger; they should distribute the dollars to the top diseases based on decisions that will help reduce health care costs. The decision for funding should be based on many factors; not just that they had that funding last year and we don’t want to take away the dollars.

I really don’t understand how our government, non-profits, lobbying or federal budgets work! I do understand the business and for profit world!

We should make decisions about where research dollars go, based on the following: # of new cases, # with disease, % of growth, # of deaths, costs to Medicare/Medicaid, costs to private pay, unpaid care, risk to others (i.e. someone with ALZ driving), potential for a cure, potential for a treatment, etc.

Every year, the NIH budget for each disease should go up and down based on many factors. Just because you had X dollars last year, does not mean you get the same next year; without justifying the need and ROI for the investment.

Yes, I have had family members and friends die and/or have all of the top killers! My Mom has Alzheimer’s, but any advances would likely come after my Mom is no longer here! I’m not saying that one life is more important than another. My message is that if the federal government is not going to increase research dollars significantly, they need to distribute the dollars more appropriately. This disease will bankrupt this country, if we do not act now!

Urge Your Members of Congress to Co-Sponsor the HOPE for Alzheimer’s Act http://ow.ly/kccMn #EndALZ

A recent conversation with another Advocate about Alzheimer’s

ALZ Advocate – I just came back from attending the annual Alzheimer’s Forum in Washington, D.C. It was an incredibly inspiring sight to see several hundred people storming the Hill Wednesday wearing purple sashes and to know that virtually every congressman’s and senator’s office heard our message. It was also very flattering, and indicative of the traction we’re starting to get, to have people in hallways and elevators stop us and thank us for the work the Association is doing. 

Yes, indeed, urge your member of congress to co-sponsor HOPE. And if you have a personal story about Alzheimer’s, tell it. They _do_ listen.

Richard Kenny – I was moved after attending my first Alzheimer’s Forum! I still think we have so much work to do and we are not asking for enough from Congress. We need to request reduced funding for other diseases like Cancer and have a more balanced approach to research spending, based on cost to care for the disease.

ALZ Advocate – while I understand and appreciate your passion for Alzheimer’s research, I simply can’t agree with you that we should get there by reducing government spending on the other diseases. Quite frankly, statistical evidence shows that the reduced death rates for cancer, HIV, heart disease, stroke, etc., is due directly to research funding levels for those diseases at NIH. The argument that the Association makes is that we should _NOT_ reduce spending on those other diseases because they still kill people. But we should recognize, from their example, that the way to reduce deaths from Alzheimer’s is to increase spending on research for _OUR_ disease. 

And this is all quite aside from the fact that a strategy of “My disease is worse than your disease” is simply not going to play with either Congress or the American people. Keep in mind that the people who were walking out of your congressman’s office while you were sitting there waiting to go in may very well have been from the Cancer Society, and I’m not _even_ going to try to tell one of them that their wife dying of breast cancer is not as much a loss as my wife who is dying of Younger Onset AD. 

Medical research is not a zero sum game and it doesn’t have to be played by saying we’re going to dip money out of someone else’s research budget to put it into ours. There is money available. The balanced approach you ask for needs to look at things like the drawdown in costs for the wars in Iraq and Afghanistan now that we’re reducing our presence there, not at how to throw someone else under the bus.

Richard Kenny – I do agree with you in some regards with pulling from other areas of the budget! If the pie is only so big, it should be distributed appropriately across the top killing diseases. Why should one get so much more than another? Yes, we have to get funding from other areas of the federal budget, but adding 40 million here and 80 million here; is not enough. If Alzheimer’s is the most costly disease, it should be funded as an investment to reduce our health care costs today and in the future. If they are not going to increase the pie, they should split up the pie more appropriately.

Richard Kenny 

I’m looking at this from a business and financial decision. If we do not get the funding now for research, this disease will bankrupt this country. It’s not about one life being more important than another. It’s about the cost of care and if we do not get it under control; we will not have any money for research for any disease or anything else that is needed in the federal budget. We sometimes have to think of it as a for profit business and make the best business decision. My Mom will likely not be around when we get funding from millions to billions. I’m fighting for the future generations and financial security for this country and the world.

ALZ Advocate – I’m sorry, I really hate to make this an argument, but you’re right that it’s very important, and I really do believe you’re going about this from the wrong direction. If you were truly looking at it as a business and financial decision, you’d also have to look at who you are selling to, because make no mistake, this is a sales pitch you’re making. And there is no way in or out of Hell that you’re going to sell Congress on the proposal that they ought to put the shaft to all their other constituents with some other disease to accommodate other constituents with our disease. 

Your arguments are intellectually correct. Your assessment of the need to invest now to reduce the absolutely incredible cost to the country down the line is intellectually correct. Your arguments are also non-starters to a politician. If you storm around telling them “Take away from all those other diseases and give it all to me”, it just ain’t gonna happen. There is an old saying in business that’s taught to every new salesman before he hits the street for the first time: “Never try to teach a pig to sing. You won’t succeed, and you’ll annoy the pig.” 

As frustrating as it is, you have to work inside the system. My congresswoman is co-sponsoring the HOPE Act. My congresswoman joined the Alzheimer’s Task Force. My congresswoman is writing a letter to the appropriations committee urging them to allocate the $100 million the President asked for, and she’s speaking in favor of increased Alzheimer’s funding for NIH. Because I asked her to. Nicely. Her husband died of cancer a few years ago. Do you think she would have met with me, twice in the last year, and directed her healthcare staffer to work with me on Alzheimer’s issues if I had told her I wanted to cut funding for cancer research? 

And lest you think I’m making these arguments because I don’t understand or I don’t have any skin in the game, let me tell you that while I’m sorry the cure won’t come in time for your mother, my wife is in extreme end stages and will die from Alzheimer’s Disease in the next 6 weeks to 2 months.

Richard Kenny – I’m sorry to hear about your wife being in extreme end stages with Alzheimer’s! I appreciate you sharing your personal story. My thoughts and prayers are with your family and you; and everyone else suffering from this disease and others. 

I do agree with you that it will never happen with our political system. I’m just making the argument that funding should be balanced (I do not think it is balanced today). The federal government either need to increase the size of the pie or distribute the pie appropriately. I’m just trying to look at it from a financial/investment decision. Just because we spent $6 billion on one disease and $400 million on another last year; it does not mean that we have to spend the same this year. It should be based on other factors too (health care costs, death rate, potential for cure or treatment, increasing population with disease, current funding, etc). The NIH funding should evolve every year and not always maintain at the previous years level (up or down). 

I’m happy to see the additional $80 million from the President’s budget and the $40 million from the NIH budget – This is great and a significant increase, over last year! 

Based on my meetings in DC; it’s apparent that every member of congress supports and understands that we need more for Alzheimer’s. Now we just need to move the needle more and more every year. The sooner the better! 

My argument was never based on one life being more important than another; it was also based on the financial costs of the disease and an appropriate balance to funding. 

Alan, I appreciate the discussion and your point of view. I like healthy debates! I’m also swayed by your point of view on some of the points that you made. 

Rich

ALZ Advocate – I think we’ve moved into the “violent agreement” stage. There’s probably no more to be said unless it’s said with feet on a brass rail and hands wrapped around frosty alcoholic beverages. We’re obviously both members of the club no one wants to be a member of, and if we were both in DC this week, we’re in the same army as well. 

Thanks for the kind words.

Richard Kenny – Agreed! Thanks for connecting on LinkedIn as well. I have enjoyed the dialog with you. Much Respect! Rich

We had a continued dialog offline after this via email and will continue to engage in discussion.

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About Richard Kenny

My Mom has Alzheimer's and I help my Dad with caregiving!
This entry was posted in Alzheimer's, Caregiver, caregiving, Dementia, Family, fundraising, Memory Loss. Bookmark the permalink.

6 Responses to Are all diseases treated equally? – I say no!!!! Alzheimer’s far behind all others

  1. Reblogged this on and commented:
    Richard just got back from the Alzheimer’s Advocacy Forum in Washington. He has some really good points about increasing Alzheimer’s research funding. See what you think…

  2. kimjoy24 says:

    Reblogged this on The Memories Project and commented:
    An interesting and thought-provoking perspective. Should the government fund disease research equally across the board? Currently, Alzheimer’s is WAY behind other diseases like cancer and AIDS. Yet, Alzheimer’s care cost the government and society far more. A difficult issue that warrants further discussion.

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