FAIR's Recommended Research Allocation
Policies
1.
A
disease’s mortality rate shall be given emphasis in determining allocations.
Secondary factors shall then apply to
insure appropriate funding increases for all
non-AIDS illnesses. (see
below).
2. The emphasis on mortality
shall be used to establish the order of funding, not the
amounts.
a. For example, cardiovascular disease has the highest mortality rate and will
receive the largest allocation. Lung cancer kills 1/5th as many as heart
disease, but it shall not necessarily receive only 1/5th the allocation.
3. The research allocations shall be determined by consensus of medical
experts and
individual disease representatives from both within and outside
of the NIH.
Secondary
Allocation Factors
Secondary Allocation Factors insure
increased funding when applicable.
- The Degree of
Disability and Suffering Produced by a Disease or
Condition
-
Diseases or conditions that have low mortality rates but cause great disability and suffering, such as
Alpha-1 Antitrypsin Deficiency, Arthritis, Autism, Autoimmune Hepatitis
(AIH), Cerebral Palsy, Chronic Fatigue Syndrome, Crohn's Disease, Cystic
Fibrosis, Fibromyalgia, Huntington's Disease, Hypothyroidism,
Lupus, Multiple Sclerosis, Muscular Dystrophy (Myasthenia Gravis,
ALS, SMA, Duchenne, etc.), Primary Biliary Cirrhosis (PBC), Primary
Sclerosing Cholangitis (PSC), Pseudomyxoma Peritonei, Spina
Bifida, etc. shall
receive increased research allocations prorated up from their present
funding level.
- The rate of
incidence of a disease: morbidity
- The degree to
which a disease cuts short a normal, productive, comfortable lifetime.
- The economic and
social costs of a disease
- The need to act
quickly to stop the spread of a disease
(e.g., a plague spread by airborne
transmission)
-
Qualifying
restriction: This secondary factor shall only apply when preventive
efforts to eradicate a disease are ineffective.
-
If a disease is a
rare or "orphan disease." (An orphan disease is a rare illness which
has not been
"adopted" by the pharmaceutical industry because it provides little
financial incentive for the private sector to make and market new
medications to
treat or prevent it. Examples of the six
thousand rare diseases are
Alagille Syndrome,
Huntington's Disease,
Polycystic Liver and Kidney Disease (PLD & PKD),
Pseudomyxoma Peritonei
[PMP] & Wegener Granulomatosis
etc.)
-
The degree to which a
disease is heavily responsible for deaths, but is frequently
not reported
on the death certificate (e.g. Parkinson’s Disease, diabetes, COPD,
Alzheimer’s
Disease, Hepatitis B & C, Drug & Alcohol Addiction and HIV/AIDS).
A panel of
experts shall assign a reasonable degree of weight in allocating an
appropriately higher allocation status for diseases that fit any of
these
definitions.
Contact Information
The FAIR Foundation
P.O. Box 11991
Palm Desert, CA 92255
Ph: 760-200-2766
Email
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