Researchers to Congress: We Need More Funding to Fight Alzheimer’s

The disease is the sixth-leading cause of death in the U.S. and the only one of the top 10 without a treatment.

National Journal
Sarah Mimms
Feb. 27, 2014, midnight

Sen. Tom Har­kin led mem­bers of a Sen­ate Ap­pro­pri­ations sub­com­mit­tee in a hear­ing Wed­nes­day on the eco­nom­ic im­pact of Alzheimer’s dis­ease, as Con­gress works with the med­ic­al com­munity to real­ize the Obama ad­min­is­tra­tion’s am­bi­tious goal of cur­ing the ail­ment by 2025.

The sub­com­mit­tee ques­tioned lead­ers from the Na­tion­al In­sti­tutes of Health and the Na­tion­al In­sti­tute of Aging, along with oth­er ex­perts. Oth­er wit­nesses in­cluded a comedi­an and Alzheimer’s act­iv­ist Seth Ro­gen, who brought a little star power — and lev­ity — to the pro­ceed­ings which were, need­less to say, pretty grim.

Though Alzheimer’s is the sixth-lead­ing cause of death in the United States, it isn’t as com­monly dis­cussed or as well fun­ded as some of the oth­er dis­eases, sev­er­al re­search­ers test­i­fied. Worse, it is the only one of the top 10 dead­li­est dis­eases in the na­tion for which there is no treat­ment to slow its pro­gress. There is no cure and it is al­ways fatal.

And the dis­ease is grow­ing rap­idly, as are the costs as­so­ci­ated with caring for pa­tients. Care for those suf­fer­ing from Alzheimer’s and oth­er types of de­men­tia is ex­pec­ted to grow from $203 bil­lion last year to $1.2 tril­lion by 2050, ac­cord­ing to Har­kin’s of­fice. Medi­care and Medi­caid costs as­so­ci­ated with the dis­ease could grow by as much as 500 per­cent over the same peri­od.

As such, ap­pro­pri­at­ors in­cluded ma­jor fund­ing for med­ic­al re­search in their fisc­al year 2014 spend­ing bill, which passed both cham­bers in Janu­ary. The bill in­cludes an $80 mil­lion in­crease, com­pared with 2012, in fund­ing for Alzheimer’s pre­ven­tion and re­search at the Na­tion­al In­sti­tute on Aging, which is part of NIH.

Sen. Bar­bara Mikul­ski, D-Md., who chairs the Ap­pro­pri­ations Com­mit­tee, noted in her ques­tion­ing that her own fath­er died of Alzheimer’s. She asked them what Con­gress could do to help find a cure.

“I think we are not at the mo­ment lim­ited by ideas. We’re not lim­ited by sci­entif­ic op­por­tun­it­ies, we’re not lim­ited by tal­ent, we’re un­for­tu­nately lim­ited by re­sources to move this en­ter­prise for­ward at the pace that it could take,” NIH Dir­ect­or Fran­cis Collins told the sen­at­or. He poin­ted out that the fund­ing for Alzheimer’s re­search is min­im­al poor that just one out of every six sci­ent­ists with a prom­ising re­search idea will ac­tu­ally get the money for it.

That got Ro­gen — who peppered the story of his moth­er-in-law’s early dia­gnos­is at the age of 55 with jokes — go­ing. He warned that without bet­ter fund­ing, re­search­ers with ideas for an Alzheimer’s cure might choose to study something “sex­i­er,” like heart dis­ease. The lack of fund­ing shows “people of my gen­er­a­tion,” Ro­gen said, “that it’s just not that high a pri­or­ity on the na­tion­al level.”

Former Rep. Den­nis Moore, D-Kan­sas, also called for more re­search fund­ing at the hear­ing. Moore, who left Con­gress in 2011, was dia­gnosed with Alzheimer’s dis­ease him­self shortly there­after and has since be­come an ad­voc­ate. He noted that NIH spend­ing for Alzheimer’s re­search has lagged (a point that also found its way in­to a de­bate on this sea­son’s House of Cards, as the dis­ease be­gins to gain more prom­in­ence). “The dir­ect cost of Alzheimer’s and re­lated de­men­tia is great­er than any oth­er con­di­tion in the United States, in­clud­ing heart dis­ease and can­cer,” Moore said, cit­ing a study pub­lished by the New Eng­land Journ­al of Medi­cine.

But Collins and oth­ers poin­ted to a pos­it­ive sign for re­search­ers: the Ac­cel­er­at­ing Medi­cines Part­ner­ship, which was formed by NIH earli­er this month to com­bat Alzheimer’s and oth­er dis­eases. The ven­ture rep­res­ents an “un­pre­ced­en­ted” level of co­oper­a­tion between 10 phar­ma­ceut­ic­al com­pan­ies — in­clud­ing gi­ants like Pf­izer, Glaxo­S­mithK­line, and John­son & John­son — as well as sev­er­al non­profit groups, NIH, and the Food and Drug Ad­min­is­tra­tion.

The 10 com­pan­ies have kicked in a total of $61.9 mil­lion, with NIH of­fer­ing an­oth­er $67.6 mil­lion, to re­search and pro­duce Alzheimer’s med­ic­a­tions with­in the next five years. Alzheimer’s was one of the few dis­eases that was big enough to bring all 10 usu­ally com­pet­ing com­pan­ies — and their cash — to the table, Collins said.

The pro­ject is part of a lar­ger fed­er­al goal to find a cure for the dis­ease by 2025. Be­fore Con­gress boos­ted its fund­ing in Janu­ary, NIH had planned to spend about $562 mil­lion on Alzheimer’s re­search this year, com­pared to nearly $10 bil­lion for can­cer and al­most $2 bil­lion for heart dis­ease.

Still, Na­tion­al In­sti­tute on Aging Dir­ect­or Richard Hodes said the goal is at­tain­able. “Am­bi­tious as it is, we have no choice,” he said, not­ing the grow­ing “ur­gency” of the is­sue as the Amer­ic­an pop­u­la­tion ages.

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