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Venturing Into The Future Plan of Genetic Pharmacy Services in Hospital Kuala Lumpur

Azhani Binti Kamarudin

Pharmacist

Genetic Pharmacy Unit HKL

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CONTENTS

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INTRODUCTION

CURRENT SERVICES

FUTURE PLAN

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Introduction to Genetic Pharmacy

Hospital Kuala Lumpur

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Organisation Chart

Staffs:

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2 Pharmacist

1 Assistant Pharmacist

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History

The first Pharmacy Unit in Malaysia that offer pharmacy services to Genetic & Rare Disease patients

2009-2013

2013-2019

2020-2025

Established under Pediatric Pharmacy in HKL to supply Genetic & Rare Disease medications

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Located in Pediatric Institute of HKL

Separated from Pediatric Pharmacy as a standalone unit, Genetic Pharmacy

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Moved to Institut Kajisaraf Tunku Abdul Rahman (IKTAR) HKL

As services offered expanded & patients increased, bigger space is required to accommodate patients

Moved back to Pediatric Institute of HKL

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2020-2025

2009-2013

2013-2019

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What We Aim For in Genetic Pharmacy

Vision:

Provide innovative pharmaceutical care to achieve optimal health through global standard pharmaceutical services.

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Mission:

To collaborate with other health professionals in providing optimal pharmaceutical care, instill pharmaceutical knowledge through continuous pharmacy education and amplify positive impact on our clients.

Objectives:

  1. Provide effective and efficient pharmaceutical care services to patients and hospital customers
  2. Provide quality clinical pharmacy services to further strengthen patient care
  3. Ensuring the management of procurement of drug and non-drug supplies is efficient.
  4. Ensure members receive continuous training and learning
  5. Implement an outstanding work culture, environment and appropriate condition to achieve the objectives of quality service.

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Emergency Treatment

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For patients in ward experiencing acute issues such as metabolic crisis

Enzyme Replacement Therapy (ERT) Infusion Clinic

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Done in Genetic Daycare Center daily

Multi-disciplinary Specialist Clinic

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Together with departments, institutions, and other experts including the National Heart Institute (cardiogenetic services), Neurology (adult and children's neurogenetic services), etc.

Genetic Cancer Specialist Clinic

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Providing genetic counseling and conducting appropriate genetic testing for patients and at-risk family members

Outpatient Clinic

(new & follow-up cases)

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Providing treatment, genetic counseling services, and conducting appropriate genetic testing

provides comprehensive clinical management to patients and families who have or are at risk of genetic diseases.

MAIN SERVICE BY GENETIC DEPARTMENT

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Genetic Pharmacy Services

Where does Genetic Pharmacy fits into Genetic Department Services?

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Genetic Pharmacy Services

Inpatient

Services

Sourcing rare disease and genetic medications for patients in Genetic Department

Outpatient Services

Supplying medications to patients who are warded in HKL and for any emergency cases that require medications

Medication Procurement

Supplying safe, accurate & quality medications to patients in outpatient setting and providing counselling to ensure safe use of medication

Drug Information Center

Answering drug queries for genetic drugs from healthcare professionals and public

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GENETIC MEDICATIONS AVAILABLE IN HKL (ERT)

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GENETIC MEDICATIONS AVAILABLE IN HKL (NON-ERT)

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Medication Procurement - Special Approval Medicine

  • Genetic & Rare Disease medicines require special approval before purchasing - not registered/listed under Ministry of Health Medicines Formulary (MOHMF) / Formulari Ubat Kementerian Kesihatan Malaysia (FUKKM)
  • More than half of genetic and rare disease medications require import permit before they are allowed to be shipped/imported into Malaysia

Guideline for Special Approval Medicine (SAM) Applications

Pharmaceutical Services Programme, Ministry of Health Malaysia

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Medication Procurement - Special Approval Medicine

Special Approval Medicine application flowchart

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Outpatient Services - Dispensing Medications

Preparing Medicines

Counter-

checking

Recording

Issuing Medicines to Patient

Receiving Prescriptions

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Outpatient Services - Preparing Medications

  • Each medication require meticulous screening and preparation to ensure they are safe for consumption especially for pediatric patients
  • Different types of dosage form need to be personalized and adjusted according to correct dose and patient’s body weight

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DRUG POWDER THAT REQUIRES DILUTION IN GENETIC & RARE DISEASE MANAGEMENT IN HKL

List Of Drug Powder Available For Genetic & Rare Disease In HKL

Sodium Benzoate Powder 5g

L-Arginine Powder 5g

L-Citrulline Powder 5g

Sodium-4 Phenylbutyrate Powder 5g

Biotin Powder

Betaine Powder

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Outpatient Services - Counselling

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Inpatient Services - Supplying for Enzyme Replacement Therapy

  • Patients will come to Genetic Daycare Center for enzyme infusion at weekly/monthly interval
  • Required medicine supply from Genetic Pharmacy

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Inpatient Services - Supplying Emergency Medications

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Drug Information Center for Rare Disease & Genetic Medications

My child is given XX medication from another hospital at the moment. Does it have any interactions with this new genetic medication you are giving now?

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-Concerned Mother-

May I know the dosage for these genetic medications for XX indication at XX body weight for this warded genetic patient?

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-Hospital B Pharmacist-

Is there any stability data of this genetic medication once the container/blister pack/vial is opened?

-Doctor A-

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What is in the future of Genetic Pharmacy?

How are we planning to expand our services

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Future Plan: Genetic & Rare Disease Pharmaceutical Services Training

Genetic &

Rare Disease Pharmaceutical Services

Training Module

Related documents – ongoing process

Genetic &

Rare Disease Pharmaceutical Services

Protocol

Plan 1

Development & publication of guidelines, protocol & training module

First guideline publication

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Done

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  • Phase 1: HKL In-house training for PF & PPF
  • Phase 2: Other hospitals that received Genetic & Rare Disease items & manage the patients.

Introducing Genetic & Rare Disease Pharmaceutical Services to healthcare personnels via conferences/project

Plan 2

Genetic Literacy Opening Windows to Personalized Medicines (GLOW), 12-13 July 2025

4th Pharmacist Annual Conference. Access, Pharmaceutical & Health Economics Conference (ASPIRE), 17-18 May 2025

Quality Assurance project:

Increasing Appropriateness of Drug Management of Genetic & Rare Disease Patients in HKL

Training plans for Pharmacists (PF) & Assistant Pharmacists (PPF)

Plan 3

✅

Done

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Done

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Genetic Pharmacy Services Development Plan

Genetic

Pharmacogenomic Services

Pre-emptive Pharmacogenomic

Reactive Pharmacogenomic

Rare Disease Therapy

Small Molecule Disorders

Disorders Involving Energy Metabolism

Complex Molecule Disorders

New services being planned

Existing services

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Take Home Message

Genetic Pharmacy services play a pivotal role in ensuring patients getting safe, accurate & quality medicines at all times

As more genetic and rare disease medicines become available in the market, it is crucial to align current pharmacy services with the latest genetic advancements & therapy in order to provide best pharmaceutical care to patients

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Future Plan Of Genetic Pharmacy Services in HKL

HKL Pharmacy Conference 2025 - B.P.C 2.0: GLOW (Genetic Literacy Opening Windows to Personalized Therapy)