Bill Text: PA SB240 | 2011-2012 | Regular Session | Introduced

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Bill Title: Establishing the Lupus Education and Awareness Program and the Interagency and Partnership Advisory Panel on Lupus; and providing for powers and duties of the Department of Health.

Spectrum: Bipartisan Bill

Status: (Introduced - Dead) 2011-01-31 - Referred to PUBLIC HEALTH AND WELFARE [SB240 Detail]

Download: Pennsylvania-2011-SB240-Introduced.html

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PRINTER'S NO. 321
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE BILL
No. 240 Session of2011
INTRODUCED BY SOLOBAY, FONTANA, RAFFERTY, D. WHITE, BREWSTER, ALLOWAY, GREENLEAF, ORIE, COSTA, LEACH AND FERLO, JANUARY 31, 2011
REFERRED TO PUBLIC HEALTH AND WELFARE, JANUARY 31, 2011
AN ACT
Establishing the Lupus Education and Awareness Program and the
Interagency and Partnership Advisory Panel on Lupus; and
providing for powers and duties of the Department of Health.
The General Assembly of the Commonwealth of Pennsylvania
hereby enacts as follows:
Section 1. Short title.
This act shall be known and may be cited as the Lupus
Education and Awareness Act.
Section 2. Legislative findings and purpose.
(a) Findings.--The General Assembly finds and declares as
follows:
(1) Lupus is an urgent national health issue. Lupus is
the result of an immune system that is unbalanced and can
become destructive to any organ or tissue in the body. Lupus
is unpredictable and potentially fatal, yet no satisfactory
treatment exists. Its health consequences include heart
attacks, strokes, seizures and organ failure.
(2) National data indicates that more than 1.5 million
Americans live with some form of lupus. Lupus affects women
nine times more often than men, and 80% of newly diagnosed
cases of lupus develop among women of childbearing age. An
estimated 65,000 people with lupus reside in this
Commonwealth.
(3) Lupus disproportionately affects women of color. It
is two to three times more common among African Americans,
Hispanics and Latinos, Asians and Native Americans and is
generally more prevalent in minority populations, a health
disparity that remains unexplained.
(4) No new drugs have been approved by the Food and Drug
Administration specifically for lupus in 50 years and, while
current treatments for the disease can be effective, they can
lead to damaging side effects.
(5) The pain and fatigue associated with lupus can
threaten one's ability to live independently, make it
difficult to maintain employment and lead a normal life. One
in five people with lupus is disabled by the disease and
consequently receives support from government programs,
including Medicare, Medicaid Social Security disability and
Social Security Supplemental Security Income.
(6) The estimated average annual total of direct and
indirect costs for an individual with lupus is $21,000. For
people who have the most serious form of lupus, medical costs
can greatly exceed this amount, causing a significant
economic, emotional and social burden to the entire family
and society.
(b) Purpose.--The purpose of this act is to create a
multipronged, Statewide program to promote public and health
professional awareness among State and local health and human
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services officials, physicians, nurses and other health care
providers and increase knowledge concerning the causes and
consequences of lupus, the importance of early diagnosis and
appropriate management and effective treatment and management
strategies by taking the following actions:
(1) Conducting educational and training programs for
health professionals on lupus diagnosis and management.
(2) Disseminating medically sound educational materials
and information on lupus research findings to patients and
health care professionals.
(3) Fostering greater public understanding and awareness
of lupus Statewide.
Section 3. Definitions.
The following words and phrases when used in this act shall
have the meanings given to them in this section unless the
context clearly indicates otherwise:
"Department." The Department of Health of the Commonwealth.
"Panel." The Interagency and Partnership Advisory Panel on
Lupus established under section 5(a).
"Program." The Lupus Education and Awareness Program
established under section 4(a).
"Secretary." The Secretary of Health of the Commonwealth.
Section 4. Program.
(a) Program established.--Subject to appropriation, there is
established within the department the Lupus Education and
Awareness Program. The program shall be composed of various
components, including, but not limited to, public awareness
activities and professional education programs.
(b) Department duties.--The department shall promote and
maintain the program with an emphasis on minority populations
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and at-risk communities in order to raise public awareness,
educate consumers and educate and train health professionals,
human service providers and other audiences.
(c) National lupus organization.--The department shall work
with a national organization that deals with lupus to implement
programs to raise public awareness about the symptoms and nature
of lupus, personal risk factors and options for diagnosing and
treating the disease, with a particular focus on populations at
elevated risk for lupus, including women and communities of
color.
(d) Program initiatives.--The program shall include
initiatives to educate and train physicians, health care
professionals and other service providers on the most up-to-date
and accurate scientific and medical information regarding lupus
diagnosis, treatment, risks and benefits of medications,
research advances and therapeutic decision making, including
medical best practices for detecting and treating the disease in
special populations. These activities shall include, but not be
limited to, all of the following:
(1) Distribution of medically sound health information
produced by a national organization that deals with lupus and
government agencies, including, but not limited to, the
National Institutes of Health, the Centers for Disease
Control and Prevention and the Social Security
Administration, through the following:
(i) Local health departments.
(ii) Schools.
(iii) Agencies on aging.
(iv) Employer wellness programs.
(v) Physicians and other health professionals.
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(vi) Hospitals.
(vii) Health plans and health maintenance
organizations.
(viii) Women's health programs.
(ix) Nonprofit and community-based organizations.
(2) Development of educational materials for health
professionals that identify the latest scientific and medical
information and clinical applications.
(3) Working to increase knowledge among physicians,
nurses and health and human services professionals about the
importance of lupus diagnosis, treatment and rehabilitation.
(4) Support of continuing medical education programs
presented by leading State academic institutions by providing
them with the most up-to-date information.
(5) Providing Statewide workshops and seminars for in-
depth professional development regarding the care and
management of patients with lupus in order to bring the
latest information on clinical advances to care providers.
(6) Development and maintenance of a directory of lupus-
related services and lupus health care providers with
specialization in services to diagnose and treat lupus. The
department shall disseminate this directory to all
stakeholders, including, but not limited to, individuals with
lupus, families and representatives from voluntary
organizations, health care professionals, health plans and
State and local health agencies.
(e) Duties of secretary.--The secretary shall do all of the
following:
(1) Designate a person in the department to oversee the
program.
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(2) Identify the appropriate entities to carry out the
program, including, but not limited to, the following:
(i) Local health departments.
(ii) Schools.
(iii) Agencies on aging.
(iv) Employer wellness programs.
(v) Physicians and other health professionals.
(vi) Hospitals.
(vii) Health plans and health maintenance
organizations.
(viii) Women's health organizations.
(ix) Nonprofit and community-based organizations.
(3) Base the program on the most current scientific
information and findings.
(4) Work with governmental entities, community and
business leaders, community organizations, health care and
human service providers and national, State and local
organizations to coordinate efforts to maximize State
resources in the areas of lupus education and awareness.
(5) Use public health institutions for dissemination of
medically sound health materials.
Section 5. Panel.
(a) Panel established.--Subject to appropriation, the
Interagency and Partnership Advisory Panel on Lupus is
established to oversee the program and advise the department in
implementing the program. The panel shall consist of the
following members, one of whom shall be appointed by the
secretary as chair:
(1) At least three individuals with lupus.
(2) Three representatives from relevant State agencies,
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including the department.
(3) Three scientists with experience in lupus who
participate in various fields of scientific endeavor,
including, but not limited to, biomedical research, social,
translational, behavioral and epidemiological research and
public health.
(4) Two medical clinicians with experience in treating
people with lupus.
(5) Four representatives from relevant nonprofit women's
and health organizations, including one representative from a
national organization that deals with the treatment of lupus.
(b) Nominations.--Individuals and organizations may submit
nominations to the secretary to be named to the panel.
Nominations may include the following:
(1) Representatives from appropriate State departments
and agencies, such as entities with responsibility for health
disparities, public health programs, education, public
welfare and women's health programs.
(2) Health and medical professionals with expertise in
lupus.
(3) Individuals with lupus and recognized experts in the
provision of health services to women, lupus research or
health disparities.
(c) Terms.--All members of the panel shall serve terms of
two years. A member may be appointed to serve not more than two
terms, whether or not consecutive.
(d) Quorum.--A majority of the members of the panel shall
constitute a quorum. A majority vote of a quorum shall be
required for any official action of the panel.
(e) Meetings.--The panel shall meet at the call of the
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chair, but not less than two times per year.
(f) Compensation.--All members shall serve without
compensation, but shall be entitled to actual, necessary
expenses incurred in the performance of their duties as members
of the panel in accordance with the reimbursement policies for
the State.
Section 7. Funding.
(a) Expenditures.--Subject to the availability of funds, the
department may make expenditures of up to $2,500 for fiscal year
2010-2011 for use toward providing educational materials to
clinics serving a high percentage of minorities in this
Commonwealth.
(b) Additional funding sources.--The secretary may accept
grants, services and property from the Federal Government,
foundations, organizations, medical schools and other entities
as may be available for the purposes of fulfilling the
obligations of the program. Any such funds shall only supplement
any appropriations made for the implementation of this act.
(c) Federal waiver.--The secretary shall seek any Federal
waiver that may be necessary to maximize funds from the Federal
Government to implement the program.
Section 8. Staffing.
The department shall provide staffing and administrative
support for the implementation of this act.
Section 20. Effective date.
This act shall take effect in 60 days.
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