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National
Hansen’s Disease Program
| |
FY
2007
Actual |
FY
2008
Enacted |
FY
2009
Request |
Increase
or
Decrease |
| Budget
Authority |
$15,972,000 |
$15,693,000 |
$16,109,000 |
+$416,000
|
| FTE |
83
|
83 |
83 |
--- |
Authorizing Legislation: Section 320 of the Public Health
Service Act.
| FY
2009 Authorization |
Indefinite |
| Allocation
Method |
Contract
|
Program Description and Accomplishments
The National Hansen’s Disease Program (NHDP) has
been providing care and treatment for Hansen’s
Disease (leprosy) and related conditions since 1921.
The program provides medical care to any patient living
in the United States or Puerto Rico through direct patient
care at its facilities in Louisiana, through grants
to an inpatient program in Hawaii and by contracting
with 11 regional outpatient clinics. Currently there
are an estimated 3,000 patients cared for through the
NHDP’s outpatient clinics. The program also provides
training to health professionals, and conducts scientific
research at the world’s largest and most comprehensive
laboratory dedicated to Hansen’s Disease. The
Program is the only dedicated provider of expert Hansen's
disease treatment services in the United States and
a crucial source of continuing education for providers
dealing with the identification and treatment of the
disease in the United States.
Increasing Quality of Care: Early diagnosis
and treatment helps reduce Hansen’s Disease-related
disability and deformity. This can only be achieved
if there are enough healthcare providers in the U.S.
with knowledge of the disease and access to the support
provided by the NHDP though its function as an outpatient
clinic, training, education, and referral center. Increasing
knowledge about Hansen’s Disease in the U.S. medical
community is expected to lead to earlier diagnosis and
intervention, resulting in a decrease in Hansen’s
Disease-related disabilities. In 2007, the NHDP exceeded
its program performance target of 40, and trained 135
private sector physicians.
Improving Health Outcomes:
Hansen’s Disease is a life-long
chronic condition which left untreated and unmanaged
will usually progress to severe deformity. Through its
focus on early diagnosis and treatment, the NHDP is
monitoring its impact on improving health outcomes for
Hansen’s Disease patients through the prevention
of increases in the percentage of patients with grades
1 or 2 disability/deformity1. In 2005, the percentage
of Hansen’s Disease patients with
Grades 1 and 2 levels of deformity was 51 percent, a
successful decrease from the 56 percent level seen in
2004.
The Program is also working to improve health outcomes
through advances in Hansen’s Disease research.
The Program is measuring its advances in scientific
knowledge through breakthroughs in genomic and molecular
biology. The key performance measure examines the development
of six protective biological response modifiers (BRMs)
and six white blood cell subtype markers (CMs) that
are important in host resistance to Hansen's Disease
and will ultimately permit development of a full animal
model for human Hansen's Disease. In 2006, the program
met its target and developed the first of the 12 reagents
(BRM-1) needed to produce a relevant animal model.
Promoting Efficiency: The National
Hansen’s Disease Program outpatient care is comprehensive
and includes treatment protocols for multi-drug therapy,
diagnostic studies, consultant ancillary medical services,
clinical laboratory analysis, hand and foot rehabilitation,
leprosy surveillance, and patient transportation for
indigent patients. The National Hansen’s Disease
Program is committed to improving overall efficiency
by controlling the cost of care at all of its outpatient
clinics while keeping increases in the cost per patient
served at or below the national medical inflation rate.
By restraining increases in the cost per individual
served by the Ambulatory Care Program Clinics and at
the NHDP’s outpatient centers below the national
medical inflation rate, the Program can continue to
serve a volume of patients that otherwise would have
required additional funding to serve in the fiscal year.
In 2006, the cost per patient served through outpatient
services was $1,366 and was $160 or 10 percent below
the target of expected growth in cost per patient served.
This can be partially attributed to certain one-time
cost decreases as well as reductions in certain contract
requirements.
Program Assessment Rating Tool: An Office of
Management and Budget (OMB) Program Assessment Rating
Tool (PART) assessment of the National Hansen’s
Disease Program was conducted in 2006, and the Program
received the second highest possible rating of Moderately
Effective. The review found that the program is the
only dedicated provider of expert Hansen's disease treatment,
education, and research in the U.S. and is on track
to meet its long-term goals. The PART noted that the
program lacks an independent evaluation that provides
information on the overall effectiveness of the program.
In response, an independent evaluation of the program
is being conducted. In addition, the Program is expanding
its efforts to train private sector physicians in the
diagnosis and treatment of Hansen's disease and is also
implementing recommendations of a recent Research Advisory
Panel of national and international experts regarding
the NHDP's research activities.
Funding History
| FY
2004 |
$17,413,000
|
| FY
2005 |
$17,251,000 |
|
FY 2006 |
$15,894,000 |
| FY
2007 |
$15,972,000
|
| FY
2008 |
$15,693,000 |
Budget Request
The FY 2009 Request of $16,109,000 is an increase
of $416,000 over the FY 2008 Enacted level. The entire
FY 2009 budget request will support the Program’s
achievement of its ambitious performance targets.
The Program will continue its goals in the area of
increasing quality of care and improving health outcomes
for Hansen’s Disease patients.
Ambitious future targets for FY 2009 focus on increasing
the number of physicians trained and improving their
knowledge and ability to diagnose and treat Hansen’s
Disease. A national promotion effort targeted at physicians
whose practice may include individuals with Hansen’s
Disease (e.g., dermatologists) is underway, as well
as targeted efforts to train health care providers
in Hansen’s Disease where clusters of newly
diagnosed cases are appearing.
In the area of Hansen’s Disease disability/deformity
prevention, it is expected that both the program’s
existing case management efforts as well as its activities
to train more private sector physicians to recognize
Hansen’s Disease and initiate treatment earlier,
will help prevent further increases in the level of
disability/deformity among Hansen’s patients.
The Program's target for its research measure will
assist in such areas as early diagnosis, vaccine development,
and a greater understanding of the transmission of
the disease. These targets are particularly ambitious
because they require breakthroughs in genomic and
molecular biology where currently, no such model for
human leprosy exists. The Program will also continue
to promote efficiency by attempting to keep its cost
per patient increases below the national medical inflation
rate.
The budget request will support the Program’s
continued coordination and collaboration with related
Federal, State, local, and private programs to further
leverage and promote efforts to improve quality of
care, health outcomes and research related to Hansen’s
Disease. Areas of collaboration include a partnership
with the Food and Drug Administration (FDA) Drug Shortage
Program to distribute the anti-leprosy drug clofazimine.
At the request of the FDA, the Program has also agreed
to manage an investigational new drug (IND) distribution
that makes the drug available in the United States.
The Program continues to collaborate with researchers
worldwide to further the study of and scientific advances
related to the disease. The Program continues to share
its expertise in treatment of the Hansen's disease
insensitive foot to the more prevalent insensitive
diabetic foot by providing multilingual training and
education on the prevention and care of the diabetic
insensitive foot.
1 Disability/deformity is measured based on the World
Health Organization scale, which ranges from 0-2.
Patients graded at 0 have protective sensation and
no visible deformities. Patients graded at 1 have
loss of protective sensation and no visible deformity.
Patients graded at 2 have visible deformities secondary
to muscle paralysis and loss of protective sensation.
| # |
Key
Outcomes |
FY
2004 Actual |
FY
2005
Actual |
FY
2006 |
FY
2007 |
FY
2008 Target/ Est. |
FY
2009 Target/ Est. |
Out-Year
Target/ Est.
(2014) |
| Target/
Est. |
Actual |
Target/
Est. |
Actual |
| Long-Term
Objective: Expand the availability of health care,
particularly to underserved, vulnerable, and special
needs populations |
| 3.lII.A.1. |
Prevent increases in the level of Hansen's Disease-related
disability and deformity among patients treated
and managed by the National Hansen’s Disease
Program (NHDP) (Percentage of patients at grades
1 and 2).
[Baseline – 2002]
|
56%
|
51% |
50% |
Nov-08 |
50% |
Nov-09
|
50%
|
50% |
2013:
50% |
| Long-Term
Objective: Promote effectiveness of health care
services |
| 3.lII.A.1. |
Develop an animal model for the full spectrum
of clinical complexities of human Hansen’s
Disease. [Baseline – 2006]
|
|
|
BRM-1 |
BRM-1
|
BRM-2
CM-1 |
Mar-08 |
BRM-3
CM-2,3 |
BRM-4
CM-4 |
2013:
Produce relevant animal model
|
| Notes:
BRM = biological response modifiers; CM = cell
markers (CM). |
| # |
Key
Outputs |
FY
2004 Actual |
FY
2005
Actual |
FY
2006 |
FY
2007 |
FY
2008 Target/ Est. |
FY
2009 Target/ Est. |
Out-Year
Target/ Est.
(2014) |
| Target/
Est. |
Actual |
Target/
Est. |
Actual |
| Long-Term
Objective: Expand the availability of health care,
particularly to underserved, vulnerable, and special
needs populations |
| 3.II.A.2. |
Number
of private sector physicians who have received
training from the NHDP.
[Baseline – 2004]
|
23 |
12 |
35 |
35 |
40 |
135 |
45 |
50 |
N/A |
| 3.II.A.3. |
Continue
to provide outpatient care for Hansen’s Disease
patients through the National Hansen’s Disease
Program.
[Baseline – 2003]
|
3,000 |
3,000 |
3,000 |
3,000 |
3,000 |
Nov
- 08 |
3,000 |
3,000 |
N/A |
| Efficiency
Measure |
| 3.E |
Maintain
increases in the cost per patient served in the
outpatient clinics to below the medical inflation
rate. |
|
$1,456
|
$1,526
|
$1,366
|
$1,599
|
Mar
- 08 |
$1,676
|
$1,756
|
N/A |
| |
Appropriated
Amount
($ Million) |
17.413 |
17.251 |
15.984 |
15.972 |
15.693 |
16.109 |
|
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