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Assembly Democratic Legislation to Document Alzheimer’s Disease-Related Deaths Heads to Gov’s Desk

Garcia, Lagana, Taliaferro, Vainieri Huttle, Danielsen, Holley, Benson & Jimenez Bill Would Permit Illness to Be Cited as Secondary Cause of Death on Official Records

Legislation sponsored by Assembly Democrats Carmelo G. Garcia, Joseph Lagana, Adam Taliaferro, Valerie Vainieri Huttle, Joe Danielsen, Jamel Holley, Daniel Benson and Angelica Jimenez to ensure that fatalities linked to Alzheimer’s disease are properly recorded in official records now heads to the governor’s desk.

The bill (A-4188) stipulates that Alzheimer’s disease and related disorders may be listed as a secondary cause of death on a certification of death. Often, the primary cause of death on a death certificate is identified as an acute condition, such as pneumonia or heart failure. Alzheimer’s disease and related disorders, however, cause a decline in brain function that may lead to problems with feeding and swallowing and can put an individual at risk for poor nutrition, dehydration and infection. This may significantly increase the risk of developing, and exacerbate the effects of, the acute condition that ultimately is listed as the primary cause of death on the person’s death certificate.

“Although recent research suggests that Alzheimer’s disease may be among the top three causes of death in the U.S., it’s difficult to substantiate that without citing Alzheimer’s on death certificates,” said Garcia (D-Hudson). “Having Alzheimer’s listed in addition to the immediate cause of death will help improve the accuracy of records and, hopefully, draw greater attention to an illness that impacts millions of Americans.”

Detaching Alzheimer’s disease from the immediate cause of death in official records undermines the reality that it is a grave illness that requires urgent action, Garcia noted. As such, under the bill, Alzheimer’s disease may be listed as a secondary cause of death, provided that: (1) the deceased person has been diagnosed with Alzheimer’s disease or a related disorder, and (2) it is determined, in accordance with accepted medical standards and with a reasonable degree of medical certainty, that Alzheimer’s disease or a related disorder was a significant contributing cause of the person’s death.

“Although data indicates that nearly 84,000 people died from Alzheimer’s and related disorders in 2010, studies suggest that the true number of deaths attributable to these conditions may be greater than 500,000,” said Lagana (D-Bergen/Passaic). “This discrepancy is due in part to the way deaths are recorded on death certificates. This bill aims to create a more accurate picture to aid medical professionals.”

“It’s important that we gain a more accurate picture of the number of deaths caused by Alzheimer’s and related disorders, because it can have a significant impact on the way these illnesses are treated, how research is directed, and how funding for all of these things is allocated,” said Taliaferro (D-Cumberland/Gloucester/Salem).

“Having more accurate data available on the number of fatalities related to Alzheimer’s will lead to more awareness, more research and ultimately, a better overall understanding of this disease,” said Vainieri Huttle (D-Bergen). “Something as simple as putting ‘Alzheimer’s’ on death certificates has the potential to transform the way we see this illness.”

“Deaths related to Alzheimer’s disease often are underreported because another complication is listed as the sole cause of death,” said Danielsen (D-Middlesex/Somerset). “Particularly among older populations, there may be more than one illness that leads to death, and it’s important for official records to reflect that.”

“Properly recording how many individuals die due to Alzheimer’s disease is the first step toward having more funding allocated for research,” said Holley (D-Union). “Once we have data available that accurately lays out the impact of this illness, we will be better equipped to move toward a cure.”

“When studies suggest that the actual Alzheimer’s death toll is six times what’s been reported, it’s a signal that we have to change our approach to recordkeeping and data collection surrounding this illness,” said Benson (D-Mercer/Middlesex). “Citing Alzheimer’s disease as a secondary cause of death is a means of more accurately recording its prevalence and acknowledging its seriousness.”

“There is huge discrepancy between the number of deaths actually recorded from Alzheimer’s and related disorders and the real number believed to be attributable to these illnesses,” said Jimenez (D-Bergen/Hudson). “Given that it’s the only major cause of death that can’t be cured or prevented, we need to improve data in order to boost research.”

Nothing in the bill would require Alzheimer’s disease and related disorders to be listed as a secondary cause of death on a death certificate, and the bill provides that no person shall be subject to criminal or civil liability or professional disciplinary action for listing or failing to list Alzheimer’s disease or a related disorder as a secondary cause of death on a certification of death.

The bill received unanimous approval from both the Assembly and the Senate.