1Establishing the Lupus Education and Awareness Program and the
2Interagency and Partnership Advisory Panel on Lupus; and
3providing for powers and duties of the Department of Health.

4The General Assembly of the Commonwealth of Pennsylvania
5hereby enacts as follows:

6Section 1. Short title.

7This act shall be known and may be cited as the Lupus
8Education and Awareness Act.

9Section 2. Legislative findings and purpose.

10(a) Findings.--The General Assembly finds and declares as
11follows:

12(1) Lupus is an urgent national health issue. Lupus is
13the result of an immune system that is unbalanced and can
14become destructive to any organ or tissue in the body. Lupus
15is unpredictable and potentially fatal, yet no satisfactory
16treatment exists. Its health consequences include heart
17attacks, strokes, seizures and organ failure.

18(2) National data indicates that more than 1.5 million

1Americans live with some form of lupus. Lupus affects women
2nine times more often than men, and 80% of newly diagnosed
3cases of lupus develop among women of childbearing age. An
4estimated 65,000 people with lupus reside in this
5Commonwealth.

6(3) Lupus disproportionately affects women of color. It
7is two to three times more common among African Americans,
8Hispanics and Latinos, Asians and Native Americans and is
9generally more prevalent in minority populations, a health
10disparity that remains unexplained.

11(4) No new drugs have been approved by the Food and Drug
12Administration specifically for lupus in 50 years and, while
13current treatments for the disease can be effective, they can
14lead to damaging side effects.

15(5) The pain and fatigue associated with lupus can
16threaten one's ability to live independently, make it
17difficult to maintain employment and lead a normal life. One
18in five people with lupus is disabled by the disease and
19consequently receives support from government programs,
20including Medicare, Medicaid Social Security disability and
21Social Security Supplemental Security Income.

22(6) The estimated average annual total of direct and
23indirect costs for an individual with lupus is $21,000. For
24people who have the most serious form of lupus, medical costs
25can greatly exceed this amount, causing a significant
26economic, emotional and social burden to the entire family
27and society.

28(b) Purpose.--The purpose of this act is to create a
29multipronged, Statewide program to promote public and health
30professional awareness among State and local health and human

1services officials, physicians, nurses and other health care
2providers and increase knowledge concerning the causes and
3consequences of lupus, the importance of early diagnosis and
4appropriate management and effective treatment and management
5strategies by taking the following actions:

6(1) Conducting educational and training programs for
7health professionals on lupus diagnosis and management.

8(2) Disseminating medically sound educational materials
9and information on lupus research findings to patients and
10health care professionals.

11(3) Fostering greater public understanding and awareness
12of lupus Statewide.

13Section 3. Definitions.

14The following words and phrases when used in this act shall
15have the meanings given to them in this section unless the
16context clearly indicates otherwise:

17"Department." The Department of Health of the Commonwealth.

18"Panel." The Interagency and Partnership Advisory Panel on
19Lupus established under section 5(a).

20"Program." The Lupus Education and Awareness Program
21established under section 4(a).

22"Secretary." The Secretary of Health of the Commonwealth.

23Section 4. Program.

24(a) Program established.--Subject to appropriation, there is
25established within the department the Lupus Education and
26Awareness Program. The program shall be composed of various
27components, including, but not limited to, public awareness
28activities and professional education programs.

29(b) Department duties.--The department shall promote and
30maintain the program with an emphasis on minority populations

1and at-risk communities in order to raise public awareness,
2educate consumers and educate and train health professionals,
3human service providers and other audiences.

4(c) National lupus organization.--The department shall work
5with a national organization that deals with lupus to implement
6programs to raise public awareness about the symptoms and nature
7of lupus, personal risk factors and options for diagnosing and
8treating the disease, with a particular focus on populations at
9elevated risk for lupus, including women and communities of
10color.

11(d) Program initiatives.--The program shall include
12initiatives to educate and train physicians, health care
13professionals and other service providers on the most up-to-date
14and accurate scientific and medical information regarding lupus
15diagnosis, treatment, risks and benefits of medications,
16research advances and therapeutic decision making, including
17medical best practices for detecting and treating the disease in
18special populations. These activities shall include, but not be
19limited to, all of the following:

20(1) Distribution of medically sound health information
21produced by a national organization that deals with lupus and
22government agencies, including, but not limited to, the
23National Institutes of Health, the Centers for Disease
24Control and Prevention and the Social Security
25Administration, through the following:

26(i) Local health departments.

27(ii) Schools.

28(iii) Agencies on aging.

29(iv) Employer wellness programs.

30(v) Physicians and other health professionals.

1(vi) Hospitals.

2(vii) Health plans and health maintenance
3organizations.

4(viii) Women's health programs.

5(ix) Nonprofit and community-based organizations.

6(2) Development of educational materials for health
7professionals that identify the latest scientific and medical
8information and clinical applications.

9(3) Working to increase knowledge among physicians,
10nurses and health and human services professionals about the
11importance of lupus diagnosis, treatment and rehabilitation.

12(4) Support of continuing medical education programs
13presented by leading State academic institutions by providing
14them with the most up-to-date information.

15(5) Providing Statewide workshops and seminars for in-
16depth professional development regarding the care and
17management of patients with lupus in order to bring the
18latest information on clinical advances to care providers.

19(6) Development and maintenance of a directory of lupus-
20related services and lupus health care providers with
21specialization in services to diagnose and treat lupus. The
22department shall disseminate this directory to all
23stakeholders, including, but not limited to, individuals with
24lupus, families and representatives from voluntary
25organizations, health care professionals, health plans and
26State and local health agencies.

27(e) Duties of secretary.--The secretary shall do all of the
28following:

29(1) Designate a person in the department to oversee the
30program.

1(2) Identify the appropriate entities to carry out the
2program, including, but not limited to, the following:

3(i) Local health departments.

4(ii) Schools.

5(iii) Agencies on aging.

6(iv) Employer wellness programs.

7(v) Physicians and other health professionals.

8(vi) Hospitals.

9(vii) Health plans and health maintenance
10organizations.

11(viii) Women's health organizations.

12(ix) Nonprofit and community-based organizations.

13(3) Base the program on the most current scientific
14information and findings.

15(4) Work with governmental entities, community and
16business leaders, community organizations, health care and
17human service providers and national, State and local
18organizations to coordinate efforts to maximize State
19resources in the areas of lupus education and awareness.

20(5) Use public health institutions for dissemination of
21medically sound health materials.

22Section 5. Panel.

23(a) Panel established.--Subject to appropriation, the
24Interagency and Partnership Advisory Panel on Lupus is
25established to oversee the program and advise the department in
26implementing the program. The panel shall consist of the
27following members, one of whom shall be appointed by the
28secretary as chair:

29(1) At least three individuals with lupus.

30(2) Three representatives from relevant State agencies,

1including the department.

2(3) Three scientists with experience in lupus who
3participate in various fields of scientific endeavor,
4including, but not limited to, biomedical research, social,
5translational, behavioral and epidemiological research and
6public health.

7(4) Two medical clinicians with experience in treating
8people with lupus.

9(5) Four representatives from relevant nonprofit women's
10and health organizations, including one representative from a
11national organization that deals with the treatment of lupus.

12(b) Nominations.--Individuals and organizations may submit
13nominations to the secretary to be named to the panel.
14Nominations may include the following:

15(1) Representatives from appropriate State departments
16and agencies, such as entities with responsibility for health
17disparities, public health programs, education, public
18welfare and women's health programs.

19(2) Health and medical professionals with expertise in
20lupus.

21(3) Individuals with lupus and recognized experts in the
22provision of health services to women, lupus research or
23health disparities.

24(c) Terms.--All members of the panel shall serve terms of
25two years. A member may be appointed to serve not more than two
26terms, whether or not consecutive.

27(d) Quorum.--A majority of the members of the panel shall
28constitute a quorum. A majority vote of a quorum shall be
29required for any official action of the panel.

30(e) Meetings.--The panel shall meet at the call of the

1chair, but not less than two times per year.

2(f) Compensation.--All members shall serve without
3compensation, but shall be entitled to actual, necessary
4expenses incurred in the performance of their duties as members
5of the panel in accordance with the reimbursement policies for
6the State.

7Section 7. Funding.

8(a) Expenditures.--Subject to the availability of funds, the
9department may make expenditures of up to $2,500 for fiscal year
102013-2014 for use toward providing educational materials to
11clinics serving a high percentage of minorities in this
12Commonwealth.

13(b) Additional funding sources.--The secretary may accept
14grants, services and property from the Federal Government,
15foundations, organizations, medical schools and other entities
16as may be available for the purposes of fulfilling the
17obligations of the program. Any such funds shall only supplement
18any appropriations made for the implementation of this act.

19(c) Federal waiver.--The secretary shall seek any Federal
20waiver that may be necessary to maximize funds from the Federal
21Government to implement the program.

22Section 8. Staffing.

23The department shall provide staffing and administrative
24support for the implementation of this act.

25Section 9. Effective date.

26This act shall take effect in 60 days.