Tuesday, September 23, 2014

War on Alzheimer's?

In the last 50 years our country has “declared war” on various societal and health issues such as poverty, cancer, drugs, and HIV/AIDS.  Such “wars” are often announced by the president to create a national sense of urgency, highlighting a need that our country must immediately address before things worsen and become an even more difficult crisis to resolve. 

Each of these “wars” has also been accompanied by federal funding in the billions of dollars.  The war on poverty resulted in massive funding for head start, free and reduced school lunch, and food stamps.  The war on cancer resulted in billions of dollars for research and programs for those suffering with cancer.  The war on drugs resulted in billions of dollars in funding for border patrols, anti-drug task forces, miles of border fencing, and new technology to aid in protecting our borders.  The war on HIV/AIDS resulted in billions of dollars for research, for vaccines, to promote effective means of prevention, etc.  And now, we supposedly have declared war on Alzheimer’s.  I say supposedly because, unlike previous wars on poverty, cancer, drugs, and HIV-AIDS, there has been no yearly accompaniment of billions of dollars in federal research dollars to try to win this supposed war.

With the unanimous passage of Public Law 111- 375 in 2010 that established the National Alzheimer’s Project Act (NAPA), Congress basically declared war on Alzheimer’s.  Under NAPA, the Secretary of Health and Human Services (SHHS), or the Secretary’s designee, is “responsible for the creation and maintenance of an integrated plan to overcome Alzheimer’s.”  Congress specified several specific goals and objectives, even designating the precise composition of the federal and non-federal members of NAPA’s Advisory Councils.  However, what Congress did not do was empower the Secretary of Health and Human Services to increase funding for federal research or programs for Alzheimer’s.  The Secretary’s charge under the law is to evaluate current programs, establish priorities, and to make annual recommendations.  Nowhere in the law is there authorization for increased funding beyond current levels.  1. 

So we have a “war” against Alzheimer’s with no more funding for research, programs and services than we had before this supposed war was declared.  Our National Institutes of Health (NIH) allocated $457 million to Alzheimer’s in Fiscal Year 2009, $450 million in 2010, $448 million in 2011, $503 million in 2012, and an estimated $484 million in 2013.  This can be contrasted with more than $3 billion of NIH funding for HIV/AIDS research during each of these same 5 years, and more than $8 billion each year for cancer research.  2.  And even these funding levels pale in comparison to the money spent on our wars on poverty and drugs, which are in the many multibillions of dollars each year.  (As but one example, federal spending for “drug control” will exceed $25 billion this year.)  3.

HIV-AIDS is now a disease that can be successfully treated and prevented, a disease not even ranked among the top 15 causes of death in this country since 1997.  However, HIV-AIDS continues to receive six times the research dollars given to Alzheimer’s, the 6th leading cause of death in this country, and the only one among the top ten causes of death with no effective means of prevention, treatment, or cure. 4.

Yet funding for HIV-AIDS research continues to increase while funding for Alzheimer’s remains flat.  Where is this supposed “war” on Alzheimer’s?  The death rate from HIV-AIDS has fallen 42% in the past decade.  The death rate for Alzheimer’s has risen 68% in the same time period.  Where’s the “war” on Alzheimer’s?  Alzheimer’s, already the most expensive medical condition in this country, costs Medicare and Medicaid about $200 million each year.  As expensive as this sounds, costs are expected to grow to more than $1.2 trillion by 2050 when the number of people with Alzheimer’s in this country grows from more than 5 million to 14 million people.  5.  So where is this “war” on Alzheimer’s?

In 2013, the Senate proposed, with President Obama’s support, an additional $100 million for NIH funding for Alzheimer’s research.  However, the House never acted upon this proposal.  In his proposed 2014 federal budget, President Obama allocated an additional $100 million for Alzheimer’s.  But even should congress vote to support an additional $100 million for Alzheimer’s research and programs, money most certainly needed,  this amounts to just a drop in the bucket.  Everyone recognizes we must fight a war against Alzheimer’s, but we are spending money as if we are fighting a backyard skirmish.  $100 million more for Alzheimer’s research and programs is simply not enough.

Senator Tom Coburn (R-OK) issues an annual “Wastebook” each year citing examples, in his opinion, of low priority and wasteful government spending. 
The 2012 and 2013 Wastebooks list expenditures by NIH that Sen. Coburn finds wasteful or of low priority in the past 2 years.  NIH allocated $295,384 to determine if male fruit flies are attracted more to male or female fruit flies, $350,000 to learn how golfers use their imagination to perform better, $548,731 acquiring evidence about how heavy drinking in one’s thirties can have a different effect on feelings of immaturity than heavy drinking in one’s twenties, and $666,905 to learn how fictional characters in the media can make someone feel better about life.  One NIH funded project costing $325,525, ”Emotional Regulation Predicts Marital Satisfaction,” concluded that if wives calmed down faster during arguments with husbands, they would find their marriages more satisfying.  NIH also granted $702,558 to study “the impact of televisions and gas generators in Vietnam.”  6.

If our nation is fighting a “war” on Alzheimer’s, and NIH finds itself with an extra $3 million to spend on research grants, wouldn’t that money be better spent on Alzheimer’s disease research, programs, and services?  Apparently NIH considers money spent studying fruit flies, golfers’ performance, the relationship between drinking and maturity, media characters, and TV/generator usage in Vietnam a more important and higher priority than funding Alzheimer’s research.  I would argue that NIH priorities must be closely re-examined. 

Where is our national commitment to truly wage war against Alzheimer’s?  A closer examination of this year’s federal budget is a perfect example of the disconnect between the impressive rhetoric about the need to increase funding for Alzheimer’s, and proposed federal spending to act upon that need.  First, the rhetoric.  In his “Vision Statement” for the 2013 NAPA Update, President Obama concluded his statement by saying that, “it is essential that we confront the challenge it [Alzheimer’s] poses to our public health.”  7.  And in the “Advancing the Health, Safety, and Well Being of the Nation” section of the 2014 federal budget, under the subheading of “Alzheimer’s Disease Initiatives,” there is this rhetoric:  “In FY2014, the Budget includes a $100 million budget initiative targeted to expanding research, education, and outreach on Alzheimer’s disease, and to improving patient, family, and caregiver support.”  8.  In a $3.8 trillion budget, $100 million is the total amount of new money that the president proposes to spend to confront the challenge Alzheimer’s poses to public health.

However, in that same section of the 2014 federal budget touting this increase of $100 million for Alzheimer’s, one can find on the previous page a subheading, “Ryan White.”  There one learns that “The Budget includes $2.4 billion for the Ryan White HIV/AIDS program to continue its critical role in support of patients across the HIV/AIDS continuum, by linking patients to care, prescribing and improving adherence to antiretroviral medicine, and achieving viral suppression.”  9.
Included in that Ryan White allocation is $943 million for providing “life-saving and life- extending medications to 218,900 individuals.”  Just this amount alone for medications is nearly 70% more than the entire NIH allocation for Alzheimer’s, a disease for which there are no current life-saving or life-extending medications. 

For 2014, NIH estimates spending $3.122 billion for HIV/AIDS ... a disease for which there are already effective methods of prevention and treatment, a disease not among the top killers in this country, and a disease with a rapidly falling death rate. 

For 2014, NIH estimates spending $562 million for Alzheimer’s ... a disease for which there is no effective means of prevention, treatment or cure, a disease that is the 6th leading cause of death in this country, a disease with a rapidly rising death rate, and the most expensive disease to treat.

CDC reports data on deaths and mortality each year.  Their latest data are for the year 2010.  In that year, an estimated 1.1 million people were living in the U.S. with a diagnosis of AIDS, and the estimated number of people who died with an AIDS diagnosis in the United States was 15,529.”  10.  In 2010, however, it is estimated that 5.2 million people were living in the U.S. with Alzheimer’s, and the estimated number of people who died with an Alzheimer’s diagnosis was 83,494.  And the number of Alzheimer’s deaths may actually be much higher.   According to a recent study by the Rush Alzheimer’s Disease Center in Chicago, Alzheimer’s may actually be the 3rd leading cause of death in this country, not the 6th, taking as many lives as heart disease and cancer.  “Alzheimer’s disease and other dementias are under-reported on death certificates and medical records.  Death certificates often list the immediate cause of deaths, such as pneumonia, rather than listing Alzheimer’s as the underlying cause.”  Epidemiologist Brian James, chief study author, said that more than 500,000 people over the age of 75 may have died of Alzheimer’s in 2010, a number that is six times higher than the most recent CDC estimate.  11.

In the 2014 federal budget, spending priorities of The Department of Health and Human Services consumes 9 pages.  The first two pages is a listing of “Funding Highlights,” followed by 7 pages of bold print subtopics giving more information about Department priorities.  One will find mention of HIV/AIDS in both sections.  One will find no mention of Alzheimer’s in either section. 12.

War on Alzheimer’s?  Apparently, not yet.

1.  111th Congress, Public Law 375.  National Alzheimer’s Project Act.  U.S. Government Printing office, p. 124, STAT. 4100-4103.  Available at:
Accessed January 14, 2014.

2.  Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health and Human Services, NIH Research Portfolio Online Report Tools (online).  Available at: www.report.nih.gov/categorical_spending.aspx.  Accessed January 14, 2014.

3.  FY2014 Federal Drug Control Budget.  Get The Facts, DrugWars Facts.org.  Available at:  www.drugwarfacts.org/cms/Economics.  Accessed January 14, 2014.

4.  National Vital Statistics Reports, Vol. 62, No. 6, December 20, 2013, p. 9.  Centers for Disease Control and Prevention.  Available at:  www.cdc.gov/nchs/data/nvsr/nvsr62/nvsr62_06.pdf.  Accessed January 14, 2014.

5.  Alzheimer’s association 2013 Alzheimer’s Disease Facts and Figures.  Alzheimer’s Association (online).  Available at:  www.alz.org/downloads/facts_figures_2013.pdf.  Accessed January 14, 2013.

6.  Wastebook No. 3, November 2012 and Wastebook No. 4, December 2013.
Accessed, January 14, 2014

7.  National Plan to Address Alzheimer’s Disease: 2013 Update, p.2.  Available at:
www.aspe.hhs/gov/daltcp/napa/NatlPlan2013.shtml.  Accessed, January 14, 2014.

8.  Fiscal Year 2014 Budget in Brief.  Strengthening Health and Opportunity for All Americans.   U.S. Department of Health and Human Services, HHS.GOV, p. 5. Available at:  www.hhs.gov/budget/fy2014/fy-2014-budget-in-brief.pdf.  Accessed, January 14, 2014.

9.  Fiscal Year 2014 Budget in Brief.  Strengthening Health and Opportunity for All Americans.   U.S. Department of Health and Human Services, HHS.GOV, p. 4. Available at:  www.hhs.gov/budget/fy2014/fy-2014-budget-in-brief.pdf.  Accessed, January 14, 2014.

10.  HIV in the United States: At A Glance.  Centers for Disease Control.
Available at:  www.cdc.gov/hiv/statistics/basics/ataglance.html.  Accessed, January 14, 2014.

11.  Alzheimer’s may kill as many people as heart disease, cancer: Study.  Available at: www.cbsnews.com/news/alzheimers-may-kill-as-many-people-as heart-disease-cancer-study/.  Accessed, March 6, 2014.

12.  Budget of the United States Government, Fiscal Year 2014.  Department of Health and Human Services, pp. 93-101.  Available at:

Published in Journal of the American Geriatrics Society, September, 2014, Vol. 62, No. 9, pp. 1819-1820.  Access at: www.onlinelibrary.wiley.com/doi/10.1111/jgs.12980/full.

Thursday, September 11, 2014

New York Can be Our Center for Alzheimer's Research


More than 5 million people in this country have Alzheimer’s disease, and more than 300,000 of those with Alzheimer’s live in New York.   By 2025, it is estimated that there will be 350,000 residents living with Alzheimer’s in New York. 1.  Congressman Steve Israel and New York Assemblyman Charles Lavine issued a joint proposal in June, 2013 suggesting that New York should become this country’s center for Alzheimer’s research.  Noting that caring for people with Alzheimer’s is already costing this nation more than $200 billion a year ... costs expected to exceed $1 trillion by 2050 ... and further noting that New York is home to some of the finest universities, health centers, and research facilities in the nation ... Israel and Lavine have proposed a state bonding initiative to secure sufficient funding to tackle this disease.  Their bond proposal would provide a dedicated funding stream to support research to find effective means to treat, cure, and eventually prevent Alzheimer’s, as well as consider new programs to help people with Alzheimer’s and their caregivers.  According to Israel and Lavine, “Today’s investment in Alzheimer’s research could save millions of lives and billions of dollars for the nation’s public health programs, as well as create jobs.” 2.

New York ... this nation’s center for Alzheimer’s research?  Shouldn’t we depend on the federal government to take the lead in such research?  Unfortunately, we cannot depend on the National Institutes of Health (NIH) to take the lead in such research given their track record.  Alzheimer’s research continues to be underfunded and of a relatively low priority when compared to NIH funding for other diseases.  For example, in 2013-2014, NIH estimates it will spend about $1 billion on Alzheimer’s research, $6 billion on HIV/AIDS research (and $12 billion on cancer research). 3.  Recent and projected NIH funding for Alzheimer’s will simply not be enough to meet the expectation of finding effective means of prevention or treatment, let alone a cure, in the near future. 

It is hard for a caregiver like me to make sense of this NIH funding imbalance.  For example, HIV/AIDS has not been among the top 15 causes of death in this country since 1997 whereas Alzheimer’s is the 6th leading cause of death in this country. 4.  From 2000-2010, deaths due to HIV/AIDS decreased 42%, but during this same period deaths due to Alzheimer’s increased 68%. 5.  Alzheimer’s is now the only disease among the top causes of death with no means of prevention, treatment, or cure. 6.  And yet, HIV/AIDS research will receive $6 for every $1 going for Alzheimer’s research.

So what do Congressman Israel and Assemblyman Lavine propose be done to come up with more funding Alzheimer’s research?  Obviously, they would both like to see increased federal funding, but they also know that we cannot count on that happening, especially now with federal sequestration budget limits in place.  Their solution is a state bonding initiative, one similar to those that have made California this nation’s center for stem cell research, and Texas this nation’s center for cancer research. 

The 2004 California initiative, known as Proposition 71, provided for $3 billion in state general obligation bonds to fund stem cell research “and provide funding, through grants and loans, for such research and research facilities.”  7.  The 2007 Texas bond issue, known as Proposition 15, was also for $3 billion in general obligation bonds to finance research grants with the hope of finding cures, treatments, and preventative measures for cancer. 8.  Both bonding initiatives hold the promise of attracting the best researchers in those fields to come to their states to conduct their research. 

New York already has in place some of the major “ingredients” to make an Alzheimer’s bond initiative a success.  Major research universities are based in New York, including 3 of our nation’s 29 Alzheimer’s Disease Research Centers ... at Columbia University, NYU, and the Mount Sinai School of Medicine. 9.  New York also has some of the finest research facilities in the nation, such as Long Island’s Cold Spring Harbor Laboratory, one of the world’s leading centers for genetic and neuroscience research.  One can only imagine the synergy of having these world class institutions working on cooperative grants and projects with sufficient funding to attract even more world class researchers and scientists to find ways to prevent, treat, and cure Alzheimer’s. 

Both the California and Texas models also involved “ordinary” citizens in committee leadership roles so their voices could be heard.  With Alzheimer’s, too often doctors and researchers ignore caregivers’ observations about diagnosis and treatment, and their voices are not heard.  The Advisory Committee for the National Alzheimer’s Project Act, NAPA, signed into law in 2011 to set national priorities for Alzheimer’s research and programs, has only one member who is a full-time 24/7 caregiver. 10.  More caregiver voices need to be heard when it comes to setting funding priorities to help those with Alzheimer’s and their caregivers.  A state bond issue could make sure that Alzheimer’s caregivers’ voices are heard.

We must invest in research to find methods of effective prevention and treatment, as well as a cure.  But we also must invest in more effective programs to help those already dealing with Alzheimer’s.  A New York research model that involved caregivers to help set funding priorities would hear suggestions that too often do not reach those setting funding priorities.  Caregivers would suggest the need for grants to local non-profit organizations such as LIAF, the Long Island Alzheimer’s Foundation, to enable them to provide more support groups for people with Alzheimer’s and their caregivers, and more social day care model programs for those with early to moderate stage Alzheimer’s.  Caregivers could explain why ongoing training is needed for those who work each day with Alzheimer’s residents in assisted living facilities and nursing homes.   Caregivers could offer many helpful suggestions for new program initiatives if given an opportunity to have their voices heard at the state level.

For caregivers already dealing with loved ones experiencing moderate to severe Alzheimer’s, helpful discoveries through such research may come too late.  Therefore, in addition to funding research on prevention, treatment, and a cure for Alzheimer’s, we must also provide funding for more effective programs to support those already dealing with Alzheimer’s right now. 

Hopefully, Congressman Israel and Assemblyman Lavine can make their proposal become a reality.  A $3 billion bond issue, spread out over 20-30 years, can make New York our nation’s center for Alzheimer’s research and innovation.  A bond issue could create new jobs and over time save the state money that otherwise would have been spent on Medicaid costs to care for New Yorkers with Alzheimer’s.  And discoveries through research would benefit all people with Alzheimer’s wherever they live.

New York ... our nation’s center for Alzheimer’s research?   It’s a big idea for a big state.  It’s an idea whose time has come.

1.  2013 Alzheimer’s Disease Facts and Figures, p. 22.  Alzheimer’s Association.  Available at: www.alz.org/downloads/facts_figures_2013.pdf.   Accessed on November 26, 2013.
2.  Pols call for statewide Alzheimer’s effort.  Newsday, June 17, 2013.  Available at: www.newsday.com/news/health/pols-call-for-statewide-alzheimer-s-effort-1.5505713.  Accessed on November 26, 2013.

3. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health & Human Services, NIH Research Portfolio Online Report Tools.  Available at: www.report.nih.gov/categorical_spending.aspx.  Accessed on November 26, 2013. 

4. National Vital Statistics Report, Vol. 61, No. 6, October 10, 2012.  Centers for Disease Control and Prevention.    Available at: www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_04.pdf.  Accessed on November 26, 2013. 

5.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures.  Available at:  www.alz.org/downloads/facts_figures_2013.pdf.  Accessed on November 26, 2013.

6.  Alzheimer’s Facts and Figures.  Alzheimer’s Association.  Available at: www.alz.org/alzheimers_disease_facts_and_figures.asp.  Accessed on November 26, 2013.

7.  Proposition 71, Stem Cell Research.  Funding.  Bonds. – California State Government.  Available at: www.smartvoter.org/2004/11/02/ca/state/prop/71/.  Accessed on November 26, 2013.

8. Cancer Research Initiative.  Available at: www.governor.state.tx.usd/priorities/families/healthier_citizens/cancer_research_initiative.  Accessed on November 26, 2013.

9. Alzheimer’s Disease Research Centers.  National Institute on Aging.  Available at: www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers.  Accessed on November 26, 2013.

10.  National Alzheimer’s Project Act.  U.S. Department of Health & Human Services.  Available at: www.aspe.hhs.gov/daltcp/napa/.  Accessed on November 26, 2013.

Published in American Journal of Alzheimer's Disease & Other Dementias. September, 2014,  Vol. 29, No. 6, pp. 489-491.  Access at: http://.aja.sagepub.com/content/29/6/489.