Insights on Scleroderma and Pulmonary Arterial

Insights is an educational program designed exclusively for individuals with pulmonary arterial hypertension and those who care for them

—brought to you by Gilead Sciences, Inc.

2

Goals for this presentation

To teach you how to:

• Recognize a medical emergency

• Prepare yourself for an emergency

• Educate your local emergency medical services

Recognizing a Medical Emergency

4

Understanding some basic emergency terminology

ER

—Emergency Room:

Area of a hospital designated for rapid treatment of people experiencing sudden illness or trauma (the term Emergency Department, or ED, is also used)

EMS —Emergency Medical Services: Community organization that provides on-the-scene medical care in emergency situations, as well as transportation to the ER

EMT —Emergency Medical Technician: A certified healthcare provider who is trained to treat and transport people in need of emergency care

Paramedic: A certified healthcare provider who has more advanced training than an EMT

9-1-1: Telephone number to report an emergency or request emergency assistance from police, fire department, or ambulance

5

What is a PAH emergency?

• Any situation that is serious or life-threatening and demands immediate medical attention

• PAH emergencies may include:

– Severe bleeding

– Sudden worsening of PAH symptoms

– Malfunctioning IV pump or loss of a central line

– Fainting or near fainting

– Fever

• Any medical emergency can become a PAH emergency

• When in doubt, call 9-1-1

Preparing Yourself for an Emergency

7

Being prepared when you have PAH

• EMS and ER staff may be unfamiliar with PAH. You can help them by:

– Wearing a medical alert bracelet

– Knowing your infusion dose if you are on therapy that requires an infusion pump

– Keeping extra supplies, if you can, and bringing them to the hospital

8

Prepare important written information

• Have the following available in case of emergency:

– Current list of your medications

– A list of any medications you are allergic to

– Contact number for your PAH physician

– Written instructions for emergency personnel from your PAH physician

– List of people you wish emergency personnel to contact in case of an emergency

– Written advance directive, if one exists

9

Prepare a fridge kit and program “ICE” into your phone

• Fridge kit

– Emergency personnel are trained to look on your refrigerator for important medical information

– Clearly mark your fridge kit and affix it to the outer door of your refrigerator

– A fridge kit contains

• Written emergency information

• Extra medical supplies, if possible

• ICE

—in case of emergency

– Program emergency numbers into your mobile phone

– Provide your emergency contacts with the information they will need to give to emergency personnel

10

If you use an infusion pump

• It is unlikely that EMS personnel will know how to operate your pump

• The hospital may not have the type of pump you require

– Always bring your backup pump with you

– If possible, have someone familiar with your pump meet you at the hospital and stay with you

• Bring additional supplies, including your backup medication, to the hospital

• Bring contact information for your specialty pharmacy

11

What happens when you call 9-1-1?

Educate Your Local

Emergency Medical Services

13

How to educate EMS and ER personnel

• Speak with personnel from your local EMS and ER before an emergency occurs

– Do not show up unannounced —make an appointment

– Plan to be brief

• Speak with your nurse coordinator about the best way to educate emergency personnel

14

Specific things to explain to EMS

• Advise EMS if you have a front-door sticker and/or a fridge kit

• Ask to be put on the

B e O n the L ook O ut”

(BOLO) list, if one is available in your community

• Inform staff never to turn off your pump or change your medication without speaking to your PAH physician or nurse coordinator

15

Specific things to explain to ER staff

• Give a brief description of your PAH medication, as it may not be familiar to the ER staff

• Emphasize the importance of contacting your PAH specialist immediately

• Ask if your medication is stocked in the hospital’s inpatient pharmacy

• If it is not, speak with your pharmacy about providing information to the hospital’s inpatient pharmacy staff

• Inform staff never to turn off your pump or change your medication without speaking to your PAH physician or nurse coordinator

• Inform staff not to use your central line to administer other medications or solutions (including saline) or to draw blood

16

Useful resources

• Consider reviewing these resources before speaking with EMS and

ER personnel; you may wish to share them during your meetings:

– Insights at www.InsightsOnPAH.com

– The Pulmonary Hypertension Association at www.phassociation.org or 1-800-748-7274

– PHCentral at www.phcentral.org

– The National Institutes of Health at www.nih.gov

– The Scleroderma Foundation at www.scleroderma.org

– Know your PH at www.knowyourph.org

Questions and Answers

Insights is an educational program designed exclusively for individuals with pulmonary arterial hypertension and those who care for them —brought to you by Gilead Sciences, Inc.

© 2010 Gilead Sciences, Inc. All rights reserved. UN2264 March 2010

Gilead and the Gilead logo are trademarks of Gilead Sciences, Inc.