Republic of the Philippines
HOUSE OF REPRESENTATIVES

Quezon City, Metro Manila

Eighteenth Congress
First Regular Session
434

HOUSE BILL NO.

Introduced by Representatives Fredenil H. Castro, Janette L. Garin, Loren B.
Legarda, Michael B, Gorriceta, Lorenz R. Defensor, Braedan John Q. Biron,
Raul C. Tupas, Teodorico T. Haresco Jr. Carlito S. Marquez, Emmanuel A.
Billones, Ma. Lucille L. Nava, Julienne Baronda, Greg G. Gasataya, Gerardo P.
Valmayor Jr., Leo Rafael M. Cueva, Francisco 'Kiko' B. Benitez, Juliet Marie De
Leon Ferrer, Ma. Lourdes T. Arroyo, Genaro M. Alvarez Jr., Sonny “SL” L.
Lagon, and Joseph Stephen “Caraps” S. Paduano

EXPLANATORY NOTE

According to the paper “Nonmotor features in  sex-linked dystonia
parkinsonism” by Roland Dominic Jamora, Lourdes K Ledesma, Aloysius Domingo,
Alvin Rae F. Cenina, and Lillian V. Lee published in 2014, XDP is an adult-on:
progressive, debilitating movement disorder that manifests with features of dyston
and parkinsonism. It was first described in 1976 as endemic 1o Filipino males from
Panay Island (Philippines).

Ina 2011 study, out of the four provinces of Panay Island, 23.7 persons out of
every 100,000 of the population in Capiz, 7.7 persons out of every 100,000 of the
population in Aklan, 0.8 for every 100,000 of the population in Antique, and 1.4
persons of every 100,000 of the population in Iloilo are affected by XDP.

As of June 2019, there are 251 XDP patients registered with Sunshine Care
Foundation in Roxas City Capiz from all Sver Capiz, Iloilo, Antique, Aklan,
Guimaras, and Negros Occidental. The foundation receives seven (7) to ten (10) new
patients every,month. Other XDP patients have been identified from parts of Luzon
and Mindanao. Unfortunately, the exact number of XDP patients remains a
challenging object of statistical research because many of those who are afllicted do
not avail of basic medical services, or they and their families consider it a shameful
curse, if not a malevolent punishment brought by fate.

It bears noting that as XDP progresses, the mental health of the patients is
affected. In fact, one out of ten deaths of XDP patients is due to suicide. According to
the paper “Suicidality among Patients with Sex-linked Dystonia-Parkinsonism


(XDP)” by Roland Dominic Jamora, Alvin Rae F. Cenina, Rosalia A. Tek
Lillian V. Lee published in Acta Medica Philippina in 2015: “One possible reason
why suicide is prevalent in XDP patients is the nature of the disease. The diagnosis of
XDP can be a family burden because of its genetic basis and the disfigurement it
produces. This may lead the patient to withdraw or be abandoned, or hidden from
others, leading to poor treatment and less than ideal living conditions. In addit
patients who have relatives with the same condition are very much aware of this
situation, These patients may be more vulnerable to depression and suicide after
observing the disease and its effects on their relatives.”

Families of XDP patients inevitably face financial pressures since the
estimated cost in the management of XDP is shown to be thirty (30) times the average
annual health expenditure of an average Filipino, according to the study “Cost-
Analysis of the Different Treatment Modalities in XDP” by Ranhel C. De Roxas and
Roland Dominic Jamora published in Frontiers in Neurology on May 8, 2019. As
such, available long-term treatments for XDP such as Deep Brain Stimulation is out
of reach of the common people who have lost employment due to XDP.

This bill seeks separate and spécial funding for the establishment of the XDP
CENTER OF THE PHILIPPINES TO SPEARHEAD RESEARCH AND PROVIDE
ASSISTANCE TO PATIENTS OF XDP being a movement disorder unique to
Filipinos for reasons still unknown due to limited research. The Center shall serve as a
database for all XDP patients around the country for their proper monitoring and
treatment and for the coordination of all research conducted to find cure for XDP.

Although the figures cited seem to reveal that the number of people afilicted
by the disorder is much smaller compared with that of more widespread and more
familiar diseases and ailments, a significant pro-active step is to arrest the spread of
the condition, and address it with more lasting treatments made available as early as
possible to Filipinos diagnosed with XDP.

It is unfortunate that there have been no government efforts to study XDP"s cause
and find its cure. Rather, a private institution in the country and private institutions
abroad are the ones conducting and leading the research without the Philippine
government’s support.

Moreover, although the Philippine Health Insurance Corporation (Philhealth)
is improving on its benefit schemes for a defined set of services for a predetermined
rate and is currently making great efforts to subsidize the needs of Filipinos, a number
of diseases such as XDP are not covered by Philhealth; even Republic Act 10747 or
the “Rare Disease Act of the Philippines” does not answer the needs of XDP patients.

XDP being a genetic disease attributed by studies to the Filipino race,
particularly those who have roots from the Panay Visayas islands, efforts to find a
cure for it deserve all the government support. Finding a cure for XDP is tantamount
to bringing back to life the XDP patients, many of whom prior to the deterioration of
their health, were productive, skillful, hardworking, and creative citizens of the
‘country.



C)

i

JANETTE L. GARIN Wn \ CASERO
Sasohen

MA. LUCILLE L. NAVA JULL

In view of all the foregoing, approval of this bill is earnestly,

LOREN B. LEGARD.

MICHAEL B. GORRICETA Lot

+ BRAEDAN JOHN Q. BIRON

TEODORI CO IR.
GERARDO JR.
—>
iCisCcO oe
va
IM Ge
JULIET LEON FERRER = MA. LOURDES T. ARROYO,

*GENARO M. ALVARE, SONNY “SI®L. LAGON


Republic of the Philippines
HOUSE OF REPRESENTATIVES
Quezon City, Metro Manila

Eighteenth Congress
First Regular Session

HOUSE BILL NO. 4348

Introduced by Representatives Fredenil H. Castro, Janette L. Garin, Loren B.
Legarda, Michael B, Gorriceta, Lorenz R. Defensor, Braedan John Q. Biron,
Raul C. Tupas, Teodorico T. Haresco Jr., Carlito S. Marquez, Emmanuel A.
Billones, Ma, Lucille L. Nava, Julienne Baronda, Greg G. Gasataya, Gerardo P.
Valmayor Jr., Leo Rafael M. Cueva, Francisco 'Kiko' B. Benitez, Juliet Marie De
Leon Ferrer, Ma. Lourdes T. Arroyo, Genaro M. Alvarez Jr., Sonny “SL” L.
Lagon, and Joseph Stephen *Caraps” S. Paduano

AN ACT
RECOGNIZING X-LINKED DYSTONIA PARKINSONIS!
RARE FILIPINO DISEASE, CREATING THE XDP C HE
PHILIPPINES TO SPEARHEAD RESEARCH AND PROVIDE ASSISTANCE
‘TO PATIENTS OF SAID DISEASE, AND PROVIDING FUNDS THEREFOR

Be it enacted by the Senate and the House of Representatives of the Philippines in
Congress assembled:

SECTION 1. Short Title.- This Act shall be known as the “XDP Act of
2019";

SEC. 2. Declaration of Policy. - \t is' the policy of the

ie lo protect and
promote the right to health of the people, including the right of persons suffering from
rare diseases to survival and full and healthy development as individuals through
access to timely health information and adequate medical care. To this end, the State
shall institutionalize a system that is comprehensive, integrative and sustainable and

will facilitate collaboration among government and nongovernment agencies and

organizations at the national and local levels, private sector, professional health
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organizations, academic institutions, communities and families towards the provision
of early and sustainable care of persons afflicted with the rare disease. ‘The State
recognizes the crucial role of research in defining health programs and activities to
address the needs of patients with a rare disease.' In support of this policy, the
establishment of the XDP Center of the Philippines aims to promote the welfare of
Filipinos suffering from XDP and their families by providing them with readily
accessible information about XDP and the medical care available to XDP patients and
coordinating research efforts towards finding medical solutions for the disease.

SEC. 3. Definition of terms:

a) X-linked Dystonia Parkinsonism (XDP) is an adult-onset,
predominantly male, inherited, debilitating, and progressive disease endemic in the
Philippines manifesting as dystonia and parkinsonism, usually occurring during the
third and fourth decades of life.

b) —_XDP Center refers to the XDP Center of the Philippines created under
this Act.

©) Director refers to the director of the University of the Philippines —
Philippine General Hospital (UP-PGH).

d) Ad hoc committe refers to the body constituted to recommend the
candidates for directorship of the UP-PGH.

©) Local health workers refer to thé midwives or nurses assigned in each
barangay of each Local Government Unit in the Country.

f) Center Director refers to the appointed person who shall head the XDP

Center of the Philippines and shall lead the projects and initiatives of the Center

Taken from RA 10747, the “Rare Diseases Act of the Philippines”
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2) Advisory Council refers to a group of medical spe:
assist the Center Director in the decision making process;

h) Website Administrator refers to the person chosen by the Advisory
Council and approved by the Center Director to maintain and update the XDP
Center’s website, consolidate all information of XDP patients from local health
workers around the country, and collate and compile all published paper on XDP from
around the world;

i) UP PGH Chief Accountant refers to the highest ranking person in the
accounting department of UP-PGH.

SEC. 4. Creation of XDP Center of the Philippines. - There is hereby created
an XDP Center of the Philippines which shall be under the control and supervision of
the Department of Health (DOH). It shall be based in the Philippine General Hospital,
University of the Philippines, Manila (UP-PGH).

SEC, 5. Powers and Functions of the Center. - The XDP Center shall have
the following powers and functions:

a) Consolidate and coordinate research activities, compile all research
information regarding XDP, and collate data of XDP patients in the country;

b) Lead efforts to study the causes of XDP and find effective means for
its prevention, cure and the alleviation of its effects;

c) Provide the public with access to current, reliable, and easy to
understand information about XDP;

d) Enter into memoranda of agreement and receive grants from local and
foreign funding agencies through the DOH upon the recommendation of the Advisory

Council; and


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e) Provide grants or aids to eligible XDP patients for their treatment or
health care needs.
SEC. 6. Director of the XDP Center. - The XDP Center shall be headed by a

Center Director who shall be responsible for the planning, implementation, and

supervision of the programs and activities of the XDP Center.

SEC. 7. Functions of the Center Director, - The Center Director shall:

a) Set the programs and priorities of the Center upon the recommendation
of the Advisory Council;

b) Approve grants or aids to persons eligible to receive such grants or aids
under this Act, upon the recommendation of the Advisory Council.

c) Approve the amount of grant taking into consideration the needs of the
patient, upon the recommendation of the Advisory Council.

d) Upon the recommendation of the Advisory Council, appoint the
Center's personnel including the website administrator and the website assistant.

SEC. 8. Composition of the Advisory Council. - There is hereby created an
Advisory Council, which is mandated to recommend policies and programs for the
attainment of the objectives of this Act, composed of the following: (1) Director of
the UP PGH as chairperson; (2) Executive Director of the National Institutes of
Health (NIH) of the University of the Philippines as vice-chair; (3) the Executive
Director of the Philippine Council for Health Research and Development (PCHRD) of
the Department of Science and Technology (DOST); (4) the UP PGH Chief
Accountant; (5) one neurologist specializing in movement disorder; (6) one
psychiatrist who provides counseling to XDP patients; (7) one neurosurgeon who
operates on XDP patients; and (8) a geneticist. The Director of the XDP Center shall

act as the secretary of the Council. The Director of the UP PGH, the Executive

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Directors of the NIH and PCHRD, and the UP PGH Chief Accountant shall be ex-
officio members of the Advisory Council.

SEC. 9. Functions of the Advisory Council. ~The Advisory Council shall

a) Meet twice every quarter at the place and time approved by the
majority of the members. The Center Director may convene the Advisory Couneil for
a special meeting on urgent matters.

b) Recommend to the Center Director, through a majority vote, the XDP
Center’s priority research programs aimed at finding a cure for XDP, or other related
research that will help XDP patients;

c) Recommend to the Center Director, through a majority vote, the XDP
patients eligible to receive financial or other grants under this Act;

d) Recommend to the Center Director, through a majority vote, the
amount of grant to the eligible XDP patient taking into consideration the financial
capacity of the patient’s family, urgency of the patient’s health care needs, and other
like criteria that may be determined by the Advisory Council;

) Recommend, through a majority vote, who among the eligible XDP
patients shall have priority in receiving the grant in accordance with the foregoing
criteria; and

f) Recommend to the Center through a majority vote the information that
shall appear in the Center’s website. d

SEC. 10. Qualifications of the Center Director and Advisory Council
members. - The Center Director shall be a Filipino citizen and a licensed physician,
The Advisory Council members shall also be Filipino citizens and shall have among

its members at least one (1) neurologist specializing in the field of movement


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disorders who handles XDP patients, one (1) neurosurgeon who conducts surgeries on
dystonia patients, and one (1) geneticist.

SEC. 11. Selection of the Center Director and Members of the Advisory
Council. -

a) Thirty (30) days after the effectivity of this act, the ad hoc committee
established in the UP PGH for the selection and recommendation of the candidate for
Director of PGH shall be reconstituted to select and recommend the candidates for
Director of the XDP Center and the non-ex-officio members of the Advisory Council.

b) Within sixty (60) days from its composition, the ad hoc committee
shall recommend at least three candidates for Center Director from which the said
official shall be selected. They shall also recommend at least three candidates for each
non-ex-officio position of the Advisory Council unless the number of persons
qualified for the position makes such requirement impracticable,

SEC. 12. Appointing Official. - The Director of UP PGH shall appoint the
Director and the non-ex-officio members of the Advisory Council of the XDP Center
within thirty (30) days from the submission by the ad hoc committee of the
candidates.

SEC. 13. Term of office of the Center Director and Advisory Council
members. — The Center Director and Advisory Council members shall serve for a
term of three (3) years and may be reappointed for another two (2) terms, unless
sooner removed for cause.

SEC. 14. Quorum. - Five (5) members of the Advisory Council present during
each meeting shall constitute a quorum.

SEC. 15. Website Administrator. — There shall be appointed a website
administrator who shall be a holder of a college degree in Information Technology or

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related field and highly proficient in the use of computer graphics and presentation
software, He shall be tasked with facilitating the Center’s public information
campaigns.

SEC. 16. Functions of the Website Administrator. — Vhe Website
Administrator shall:

a) Be responsible for creating, designing and maintaining the Center’s
website with the approval of the Center Director; see to it that the contents of the
website are up to date and relevant; forward queries to the persons who have the
expertise and know-how on the subject matter; and shall collate and compile
published papers on XDP from around ‘the world.

b) Make graphical representation of difficult medical concepts for easy
appreciation and understanding of the public especially XDP patients.

) Be responsible for creating an email address or any form of
communication where the local health workers shall send their report of an XDP
patient in their locality and, with the help of at least one assistant, collate all
information from all the LGUs regarding XDP patients in the country.

4) Treat the information received from the local health workers about
XDP patients with utmost confidence, only publish or report information, photos or
videos of XDP patients with their express written permission or permission recorded
ina video. J

The Director of the XDP Center, the Director of the UP PGH, and the PGH
Chief Accountant shall always have access to the user name and password of the
Center’s website.

SEC. 17. Reporting. - Every quarter, the Center Director shall submit a report

to the Secretary of Health on the activities of the Center.

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SEC. 18. Information from Local Health Workers. - ‘The local health workers
shall immediately report to the Center the names and addresses of XDP patients in
their areas of responsibility. If the area is outside the coverage of the internet,
reporting shall be made at least once a month, using the email address or means of
communication provided by the Center for reporting. If the patient permits, through
express written consent or consent recorded on video, the local health worker may
take pictures or videos of the patient to be sent and evaluated by the Center. The
Secretary of the DOH shall institute measures to ensure that local health workers are
informed of their duty under this Act.

SEC. 19. Appropriations. — a) For the first three (3) years after the eflectivity
of this Act, the XDP Center shall have an annual budget of One Hundred Million

Pesos (P100,000,000.00) to be taken from the share of the national government from

the incomes of Philippine Amusement and Gaming Corporation (PAGCOR) and
Philippine Charity Sweepstakes Office (PCSO) as provided under their respective
charters. On the fourth and succeeding years, the annual appropriation shall be
included in the General Appropriations Act (GAA).

b) The Center shall use one-third (4) of its budget for research to find the
cure or treatment for XDP, one-third ('4) for the maintenance medicines of the XDP
patients and the grant of long term pain alleviation such as Deep Brain Stimulation
(DBS), or any surgical procedure that will beyefit the patient, its maintenance, and
other procedures determined by the Advisory Council as effective and poses no
significant danger to the patient, but in no case shall the grant exceed One Million
Eight Hundred Thousand pesos (P1,800,000.00) per patient, and the last one-third

(%) for its operation, training, and information dissemination throughout the country.


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SEC. 20. Donations to the Foundation. - The Center is hereby authorized to
solicit and receive donations, grants, contributions, gifis or endowments, through the
DOH, from all sources foreign or domestic, and whether government or private, without
need of securing a permit, approval or registration. Notwithstanding any provision of law
to the contrary, all grants, contributions, gifts or endowments received by the Center
pursuant hereto, shall be exempt from income, donor’s and all other kinds of taxes, and
shall further be deductible in full for purposes of computing the maximum amount
deductible for tax purposes under the National Internal Revenue Code, as amended.

SEC. 21. Remuneration. — a) The Center Director shall have the same salary
grade and monthly compensation as a "University Professor of the University of the
Philippines.

b) The Advisory Council members shall not receive any remuneration from
the Center but each shall receive a per diem of Ten Thousand Pesos (P 10,000.00) per
meeting, or an amount equal to one-tenth (1/10) of the monthly compensation of the
Center Director, whichever is higher.

©) The foregoing remuneration shall in no way be considered as double
compensation.

d) The Center Director and the non-ex officio members of the Advisory
Couneil are also allowed to continue to practice their profession.

e) The Center Director and the Advisory Council shall decide on the salary of
the employees of the Center keeping in mind the wages received by government
employees.

f) Their remuneration shall be adjusted to account for inflation

SEC. 22. Signatories. - The Center Director and the PGH Chief Accountant

shall be the signatories for the release of all funds from the Center.
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SEC. 23. Independence of the Center.- the XDP Center shall operate
independently from UP PGH.

SEC. 24. Implementing Rules and Regulations. - Within sixty (60) days trom
the appointment of the Center Director and the members of the Advisory Council, the
Advisory Council shall convene to promulgate the Implementing Rules and
Regulations of this Act.

SEC. 25. Interpretation. - All doubts in the interpretation and implementation
of this Act, including its IRR, shall be resolved in favor of the XDP patient.

Nothing in this Act disqualifies the XDP patient from availing of the benefits
provided by RA 11223 or the Universal Health Act, RA 7277 or Magna Carta for
Persons with Disability as amended by RA 10754 or An Act Expanding the Benefits

and Privileges of Persons with Disability (PWD), RA 10747 or The Rare Disease Act

of the Philippines, and other laws.

SEC. 26. Repealing Clause. - All laws, decrees, executive orders, and other
laws including their implementing rules and regulations inconsistent with the
provisions of this Act are hereby amended, repealed or modified accordingly.

SEC. 27. Separability Clause. - If any part or provision is held invalid or
unconstitutional, the remaining parts or provisions not affected shall remain in full
force and effect. ;

SEC. 28. Effectivity. - This Act shall take effect fifteen (15) days from the
date of its publication in full in at least two (2) national papers of general circulation.

Approved,