Research and Common Sense
Updated: Dec 18, 2019
You know, I'll never understand why non-medical, non-research, non-veterans attempt this kinds of stuff. My best way to explaining it: In trauma medicine, when you have a patient who is actively bleeding, the first thing you think is... "hey, lets stop the bleed" and then you put in blood products? Right? Not, dump blood in and watch it flow though? This is very similar.
For: PUBLIC RELEASE
From: HunterSeven Foundation
CC: Bowman, C., Price, L., Fronabarger, D., Bryant, M., Wheeler, C., Ramos, C., Pitchford, J.
Date: 09 April 2019
Re: OPPOSE: H.R. 1001 – “Family Member Access to Burn Pit Registry Act”
Introduced by Texas Representative Joaquim Castro on February 6, 2019; Referred to Veterans’ Affairs subcommittee on March 1, 2019. As reads: “Secretary of the Department of Veterans Affairs will provide a process by which a family member of a deceased veteran who is eligible for Dept. of Veterans’ Affairs Burn Pit Registry may register for such registry on behalf of the deceased”. 8(1)(c)(2)(c): “…inserting subsection, the following new subsection will provide a process…”.
The National Centers for Biotechnology Information, a subsidiary of the United States National Library of Medicine (NLM); National Institute of Health (NIH) reported directly in-relation-to the Dept. of Veterans’ Affairs Burn Pit Registry that “…when developing a registry, it is important to clearly define its goals and expected benefits while being mindful to its limitations”. Such establishment would require at-minimum 12months to adhere to this specific registries’ complexity. To be an effective medical database and practicum tool, registry conception requires large expenditures of both time and money – substantial levels of technical and scientific expertise to establish a well-functioning exposure-based registry. Additionally, lack of consistency makes results interpretation difficult to evaluate if said registry is meeting its stated intent and suggests lack of focus. Changing registry questions would need to be tailored to the end-state objectives of data collection. Currently, the Burn Pit Registry does not allow for “updates” or “changes in status” e.g. cause of death, age of death. This singular piece is an important oversight, however Dr. Raul Ruiz, M.D. put forth H.R. 1381 with Senate support in S. 554 (SUPPORT).
The Burn Pit Registry has already been deemed “flawed” by veterans, politicians and healthcare professionals alike, lacking evidence-based questions pertaining to toxic exposures relating to deployment(s) to the Middle East but also while only accounting for approximately 4.27% of the veteran population it intends to serve (r = 172,977, g = 650,000 + a/i = 3,500,000). Adhering to proper ethical guidelines, clinical practice standards upheld by 45 Code of Federal Regulation 46, 21 C.F.R. 50 and 21 C.F.R. 56, the anticipated results should yield and justify the performance of the experiment and should yield fruitful results for the good of the cohort, unprocurable by other methods or means of study, and not random and unnecessary in nature.
The HunterSeven Foundation, being comprised of well-educated, versed and cultured in both the healthcare field of patient care and research as well as in the veteran community as evidenced by combined years of military service and deployments, tactfully opposes H.R. 1001 for said reasons above. Combining two vastly different sources of information, i.e. “primary” source (veteran, firsthand), “secondary” source (anyone other than veteran) would be heresy as the veteran themselves would be the only reliable source of data due to their “lived experiences”. Deviating from accurate, reliable, first-hand validated information would be detrimental to the already deficient registry. The current prevalence of burn pit registry self-reported data ranges between 38-91% therefore it is very concerning as well-seasoned researchers that the standard deviation would prove to be too vast for analysis making previously collected data nonexistent.
We suggest on behalf of ethical accuracy and to enact separate databases and registry-entities who have no governmental affiliation and hold subject matter experts in said field, i.e. organizations such as the Tragedy Assistance Program for Survivors (TAPS). Such non-governmental, no-interest/no-benefit agency would have the freedom and leniency to create a through registry for survivors and align said entries with those alike to maintain a smaller deviation and variance.
In closing, the best way to “create” a solution is to first stop the problem, by adding additional information to an already-flawed source of data collection will show costly and detrimental to already-obtained record. We, as veterans and medical professionals with years of veteran-related healthcare research ask you OPPOSE H.R. 1001 as proposed, therein support H.R. 1381 in place in addition to proposing a request for an outside organization to begin data collection on survivors and spouses of Iraq and Afghanistan veterans who’ve believed to have passed related to toxic exposures while deployed.
Tags: Politics, HunterSeven, Legislation, Congress, Burn Pits, TAPS