1.This Act may be cited as the
Pediatric, Adolescent, and Young Adult
Cancer Survivorship Research and Quality of Life Act of
2011
.
2.Congress finds the following:
(1)An estimated
12,400 children and adolescents under age 20 are diagnosed with cancer each
year.
(2)In 1960, only 4
percent of children with cancer survived more than 5 years, but today, cure
rates have increased to 78 percent for children and adolescents under age
20.
(3)The population of
survivors of childhood cancers has grown dramatically, to over 300,000
individuals of all ages as of 2007.
(4)Whereas as many as
two-thirds of childhood cancer survivors are likely to experience at least one
late effect of treatment, with as many as one-fourth experiencing a late effect
that is serious or life-threatening. The most common late effects of childhood
cancer are neurocognitive, psychological, cardiopulmonary, endocrine, and
musculoskeletal effects and secondary malignancies.
(5)According to the
Intercultural Cancer Council, because of disparities in health care delivery
throughout the cancer care continuum, minority, poor, and other medically
underserved communities are more likely to be diagnosed with late stage
disease, experience poorer treatment outcomes, have shorter survival time with
less quality of life, and experience a substantially greater likelihood of
cancer death.
(6)The late effects
of cancer treatment may change as treatments evolve, which means that the
monitoring and treatment of cancer survivors may need to be modified on a
routine basis.
(7)Despite the trauma
caused by childhood cancer, there is a lack of standardized and coordinated
psychosocial care for the children and their families, from the date of
diagnosis through treatment and survivorship.
(8)The Institute of
Medicine, in its reports on cancer survivorship entitled Childhood Cancer
Survivorship: Improving Care and Quality of Life, states that an
organized system of care and a method of care for pediatric cancer survivors is
needed.
(9)Focused and
well-designed research and pilot health delivery programs can answer questions
about the optimal ways to provide health care, follow-up monitoring services,
and survivorship care to those diagnosed with childhood cancer and contribute
to improvements in the quality of care and quality of life of those
individuals.
3.Cancer
survivorship programs
(a)Cancer
survivorship programsSubpart 1 of part C of title IV of the
Public Health Service Act (42 U.S.C. 285 et seq.) is amended by adding at the
end the following:
417G.Pilot programs
to explore model systems of care for pediatric cancer survivors
(a)The Secretary shall
make grants to eligible entities to establish pilot programs to develop, study,
or evaluate model systems for monitoring and caring for childhood cancer
survivors.
(b)In this section, the term eligible entity
means—
(1)a medical
school;
(2)a children’s
hospital;
(3)a cancer center;
or
(4)any other entity
with significant experience and expertise in treating survivors of childhood
cancers.
(c)The Secretary may make a grant under this section to an
eligible entity only if the entity agrees—
(1)to use the grant
to establish a pilot program to develop, study, or evaluate one or more model
systems for monitoring and caring for cancer survivors; and
(2)in developing,
studying, and evaluating such systems, to give special emphasis to the
following:
(A)Design of
protocols for different models of follow-up care, monitoring, and other
survivorship programs (including peer support and mentoring programs).
(B)Development of
various models for providing multidisciplinary care.
(C)Dissemination of
information and the provision of training to health care providers about how to
provide linguistically and culturally competent follow-up care and monitoring
to cancer survivors and their families.
(D)Development of
support programs to improve the quality of life of cancer survivors.
(E)Design of systems
for the effective transfer of treatment information and care summaries from
cancer care providers to other health care providers (including risk factors
and a plan for recommended follow-up care).
(F)Dissemination of
the information and programs described in subparagraphs (A) through (E) to
other health care providers (including primary care physicians and internists)
and to cancer survivors and their families, where appropriate.
(G)Development of
initiatives that promote the coordination and effective transition of care
between cancer care providers, primary care physicians, and mental health
professionals.
(d)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated $15,000,000 for each of fiscal years 2013 through 2017.
417G–1.Workforce
development collaborative on medical and psychosocial care for childhood cancer
survivors
(a)The Secretary shall, not later than 1 year after the date
of enactment of this Act, convene a Workforce Development Collaborative on
Medical and Psychosocial Care for Pediatric Cancer Survivors (referred to in
this paragraph as the Collaborative). The Collaborative shall be a
cross-specialty, multidisciplinary group composed of educators, consumer and
family advocates, and providers of psychosocial and biomedical health
services.
(b)The Collaborative shall submit to the Secretary a report
establishing a plan to meet the following objectives for medical and
psychosocial care workforce development:
(1)Identifying,
refining, and broadly disseminating to health care educators information about
workforce competencies, models, and preservices curricula relevant to providing
medical and psychosocial services to persons with pediatric cancers.
(2)Adapting curricula
for continuing education of the existing workforce using efficient
workplace-based learning approaches.
(3)Developing the
skills of faculty and other trainers in teaching psychosocial health care using
evidence-based teaching strategies.
(4)Strengthening the
emphasis on psychosocial health care in educational accreditation standards and
professional licensing and certification exams by recommending revisions to the
relevant oversight organizations.
(5)Evaluating the
effectiveness of patient navigators in pediatric cancer survivorship
care.
(6)Evaluating the
effectiveness of peer support programs in the psychosocial care of pediatric
cancer patients and survivors.
(c)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated $5,000,000 for each of fiscal years 2013 through
2017.
.
(b)
(1)Section 3 of the Hematological Cancer Research Investment
and Education Act of 2002 (Public Law 107–172; 116 Stat. 541) is amended by
striking section 419C
and inserting section
417C
.
(2)The amendment made by paragraph (1) shall take effect as if
included in section 3 of the Hematological Cancer Research Investment and
Education Act of 2002 (Public Law 107–172; 116 Stat. 541).
4.Grants to improve
care for pediatric cancer survivorsSection 417E of the Public Health Service
Act (42 U.S.C. 285a–11) is amended—
(1)in the heading, by
striking research and
awareness
and inserting research, awareness, and
survivorship
;
(2)in subsection
(a)—
(A)by redesignating
paragraph (2) as paragraph (4); and
(B)by inserting after
paragraph (1) the following:
(2)Research on
causes of health disparities in pediatric cancer survivorship
(A)The
Director of NIH, acting through the Director of the Institute, in coordination
with ongoing research activities, shall make grants to entities to conduct
research relating to—
(i)needs and outcomes
of pediatric cancer survivors within minority or other medically underserved
populations;
(ii)health
disparities in pediatric cancer survivorship outcomes within minority or other
medically underserved populations;
(iii)barriers that
pediatric cancer survivors within minority or other medically underserved
populations face in receiving follow-up care; and
(iv)familial,
socioeconomic, and other environmental factors and the impact of such factors
on treatment outcomes and survivorship.
(B)In making grants for research under subparagraph (A)(i)
on pediatric cancer survivors within minority or other medically underserved
populations, the Director of NIH shall ensure that such research addresses both
the physical and the psychological needs of such survivors.
(3)Research on late
effects and follow-up care for pediatric cancer survivorsThe
Director of NIH, in coordination with ongoing research activities, shall
conduct or support research on follow-up care for pediatric cancer survivors,
with special emphasis given to—
(A)the development of
indicators used for long-term patient tracking and analysis of the late effects
of cancer treatment for pediatric cancer survivors;
(B)the identification
of risk factors associated with the late effects of cancer treatment;
(C)the identification
of predictors of neurocognitive and psychosocial outcomes;
(D)initiatives to
protect cancer survivors from the late effects of cancer treatment;
(E)transitions in
care for pediatric cancer survivors;
(F)training of
professionals to provide linguistically and culturally competent follow-up care
to pediatric cancer survivors; and
(G)different models
of follow-up care.
;
and
(3)in subsection
(d)—
(A)by striking
this section and
and inserting subsection (a)(1),
subsection (b), and
;
(B)by striking
2013
and inserting 2017
; and
(C)by inserting after
the second sentence the following: For purposes of carrying out
subsections (a)(2) and (a)(3), there is authorized to be appropriated
$10,000,000 for each of fiscal years 2013 through 2017.
.
5.Comprehensive
long-term follow-up services for pediatric cancer survivorsPart B of title III of the Public Health
Service Act (42 U.S.C. 243 et seq.) is amended by inserting after section 317T
the following:
317U.Clinics for
comprehensive long-term follow-up services for pediatric cancer
survivors
(a)The Secretary shall
make grants to eligible entities to establish and operate a clinic for
comprehensive long-term follow-up services for pediatric cancer
survivors.
(b)In this section, the term eligible entity
means—
(1)a school of
medicine;
(2)a children’s
hospital;
(3)a cancer center;
or
(4)any other entity determined by the
Secretary to have significant experience and expertise in—
(A)treating
pediatric, adolescent, and young adult cancers; or
(B)integrating
medical and psychosocial services for pediatric, adolescent, and young adult
cancer survivors and their families.
(c)The Secretary may make a grant under this section to an
eligible entity only if the entity agrees to use the grant to pay costs
incurred during the first 4 years of establishing and operating a clinic for
comprehensive, long-term, follow-up services for pediatric cancer survivors,
which may include the costs of—
(1)providing medical
and psychosocial follow-up services, including coordination with the patient’s
primary care provider and oncologist in order to ensure that the medical needs
of survivors are addressed, and providing linguistically and culturally
competent information to survivors and families with appropriate outreach to
medically underserved populations;
(2)the construction,
expansion, and modernization of facilities;
(3)acquiring and
leasing facilities and equipment (including paying the costs of amortizing the
principal of, and paying the interest on, loans for such facilities and
equipment) to support or further the operation of the grantee; and
(4)the construction
and structural modification (including equipment acquisition) of facilities to
permit the integrated delivery of ongoing medical and psychosocial care to
pediatric cancer survivors and their families at a single service site.
(d)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated $10,000,000 for each of fiscal years 2013 through
2017.
.