Comprehensive Lupus Prevention Act

Senate Difice of the erectary TWENTIETH CONGRESS OF THE REPUBLIC OF THE PHILIPPINES First Regular Session AUG 27 P1:48 SENATE RECEIVED BY: 1281 S. No. _ Introduced by SENATOR CAMILLE A. VILLAR AN ACT INSTITUTING A NATIONAL HEALTH PROGRAM TO COMBAT SYSTEMIC LUPUS ERYTHEMATOSUS (SLE) DISEASE, AND APPROPRIATING FUNDS THEREFOR EXPLANATORY NOTE The Philippine Constitution, in Article II, Section 15, declares the State policy that - "The State shall protect and promote the right to health of the people and instill health consciousness among them". Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disorder for which no cure currently exists, characterized by the immune system mistakenly attacking healthy tissues and affecting various organs, including the skin, joints, and major body systems.! According to a report, lupus affects over five (5) million people worldwide, with women being disproportionately impacted. In the Philippines, an estimated 30 to 50 individuals per 100,000 population live with this chronic illness, fighting with significant daily challenges. SLE represents approximately 70% of all lupus cases.2 Despite this burden, public awareness and understanding of lupus remain limited. Many patients endure prolonged suffering due to delayed diagnosis, high costs 1 https://medlineplus.gov/ency/article/000435.htm 2 https://www.unitednews.net.ph/en/article.php?post=114567

of lifelong treatment, and lack of specialized care. The stigma associated with chronic illnesses further aggravates the difficulties faced by persons living with lupus. This bill seeks to establish a National Health Program for Lupus to promote early diagnosis, raise public awareness, support research, and ensure accessible treatment. In view of the foregoing, the immediate passage of this measure is earnestly sought. Camillios mucia CAMILLE A. VILLAR

Senate Difice of the secrelarp TWENTIETH CONGRESS OF THE ) REPUBLIC OF THE PHILIPPINES First Regular Session 25 AUG 27 P1:48 SENATE RECEIVED BY: S. No. 1281 Introduced by SENATOR CAMILLE A. VILLAR AN ACT INSTITUTING A NATIONAL HEALTH PROGRAM TO COMBAT SYSTEMIC LUPUS ERYTHEMATOSUS (SLE) DISEASE, AND APPROPRIATING FUNDS THEREFOR Be it enacted by the Senate and House of Representatives of the Philippines in Congress assembled:

Sec 1. Short Title. - This Act shall be known as the "Comprehensive Lupus

Prevention Act

Sec. 2. Declaration of Policy. - It is the policy of the State to protect and

5 promote the right to health of the people. As such, the State shall promote awareness 6 of the health programs focusing on Systemic Lupus Erythematosus (SLE) to empower 7 citizens suffering therefrom to become, to the best of their potential, independent, self-reliant, and productive members of society.

Sec. 3. Definition of Terms. - For the purpose of this Act, "Systemic Lupus

Erythematosus" (SLE) or "Lupus" shall be construed to mean a chronic autoimmune disease where the immune system attacks the body's cells and tissue, resulting in inflammation and tissue damage in different parts of the body, but most often affecting the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system, as diagnosed by a competent medical practitioner.

Sec. 4. National Survey and Research. - The National Institutes of Health (NIH)

2 created under Republic Act No. 8503 shall conduct an annual survey to determine the 3 extent and total incidence and prevalence of persons with SLE in the country for the 4 government to provide the necessary health interventions to address the needs faced 5 by persons with lupus.

Sec. 5.

Integrated Approach to Research in Cooperation with Concerned 8 Research Agencies. - Within six (6) months from the date of effectivity of this Act, the 9 DOH shall ensure that there is no conflict of interest between the NIH's research 10 agenda and that of pharmaceutical corporations or other government agencies addressing the issue of lupus.

Sec. 6. National Program for Lupus Prevention and Treatment. - The DOH shall

implement a comprehensive and nationwide program on lupus prevention and treatment with the following objectives: a) to promote and provide mechanisms for early identification, screening, and diagnosis of persons suffering from lupus; b) to promote public awareness, education, and information on issues concerning lupus; c) to establish sustainable support network for families of persons diagnosed with lupus; d) to provide referral services to patients for appropriate educational and medical expertise and to identify appropriate education or medical facilities suited to the needs of patients; e) to undertake research and collaborate with other institutions for the conduct of research activities pertaining to the disease; f) to promote an advocacy discouraging bias against and stereotyping of afflicted persons; g) to provide an avenue for the sharing of best practices on issues relating to early detection, prevention, cure, treatment, and rehabilitation of persons diagnosed with lupus; and

h) to network with other organizations, institutions, and professionals working on public programs for persons diagnosed with lupus.

Sec. 7. Programs and Service for Lupus Prevention. - The programs and services

5 that will be provided by the DOH shall include, but not be limited to, the following: a) orientation and counseling services for families of newly-diagnosed persons with lupus; b) establishment of national and regional referral services where the DOH shall maintain an updated list of health care institutions and practitioners concerned with the treatment of lupus; c) publish a newsletter on current developments and research on lupus, as well as other reading materials on the early detection, prevention, and treatment of lupus, and best practices for the care of diagnosed persons with lupus; d) conduct of continuing education and training programs on the proper care of diagnosed persons with lupus; and e) establishment of a databank and an information and monitoring system on country-specific statistics pertaining to lupus.

Sec. 8. Lupus Early Detection and Screening Fees. - The Philippine Health

Insurance Corporation shall include the cost of early detection and screening programs for lupus as one of the available benefits to its members. The early detection and screening fees shall be applied to, among others, testing cost, education, follow-up, and readable overhead expenses.

Sec. 9. Donations and Grants. - The DOH, NIH, and other departments of

the DOH that may thereafter be tasked with the implementation of this Act shall have the power to receive donations and grants from local and international donor institutions, foundations, and foreign donor agencies, provided that pertinent laws and rules on the receipt, accounting, and disbursement thereof shall be complied with.

Sec. 10. National Lupus Awareness Week. - In order to grow national interest

2 and participation in the issues and concerns of lupus patients, the first week of May 3 shall annually be celebrated as "Lupus Awareness Week." This week-long activity 4 will be spearheaded by the DOH, in coordination with other concerned agencies, 5 institutions, and stakeholders.

Sec. 11. Continuing Education and Training of Health Personnel and Service

Providers on Lupus Prevention and Treatment. - All DOH staff and health providers 9 providing health services to persons diagnosed with lupus shall undergo a 10 mandatory continuing education and training program to ensure the delivery of up- to-date and relevant services.

Sec. 12. Protection Against Forcible Administration of Medical Treatment or

Enrollment in Programs. - All persons administering treatment, counseling, or medication as well as all persons involved in the implementation of the DOH programs as mandated in this Act shall respect the right of each patient to determine for himself or herself the medical treatment to be administered as well as the programs wherein he or she will participate, if any.

Sec. 13. Appropriations. - The amount necessary to carry out the provisions

of this Act shall be included in the annual general appropriations of the DOH.

Sec. 14. Implementing Rules and Regulations. - Within six (6) months from

the date of effectivity of this Act, the DOH shall promulgate the necessary implementing rules and regulations to carry out the provisions of this Act.

Sec. 15. Repealing Clause - All laws, presidential decrees, executive orders,

rules and regulations or parts thereof inconsistent with provisions of this Act are hereby repealed, amended or modified accordingly.

Sec. 16. Separability Clause. - If any provision or part of this Act is declared

unconstitutional or invalid, the remainder of this Act or any provision not affected shall remain in full force and effect.

Sec. 17. Effectivity Clause. - This Act shall take effect fifteen (15) days after

its publication in the Official Gazette or two (2) newspapers of general circulation. Approved,