Frequently asked questions about Ventavis^® (iloprost)

A: PAH is a chronic disease, and the medicines that treat PAH are meant to be taken every day for the long term. Talk with your doctors about how Ventavis fits into their treatment plan for you. Until there’s a cure, taking the treatment prescribed by your doctor is an important way to help you manage your disease. In clinical studies, Ventavis has been shown to help NYHA Class III and IV PAH patients improve PAH symptoms (functional class), walk farther in a timed test, and decrease the worsening of PAH. Every person responds differently to therapy, so it’s important to let your doctor know how you feel when you visit him/her. Keep in mind that with a chronic disease like PAH, not getting worse is considered an important treatment goal.

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A: It’s important to remember that each person responds differently to therapy and some patients may not respond to specific therapies. You shouldn’t expect to feel better overnight. It can sometimes take months to respond to treatment, so it’s important to try to keep a positive attitude. Try setting a goal to help you track your progress on Ventavis. You and your doctor should work together to set a reasonable goal. Some people may want to walk around the block. Others may want to attend their child’s soccer match. Choose something that’s meaningful and realistic for you, and then keep track of how you are doing. Having a goal can be an important part of your treatment plan.

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A: Once you and your doctor decide that Ventavis is the right treatment for you, your healthcare team sends the Ventavis prescription to PAH Pathways, Actelion’s service and support program. Counselors from PAH Pathways will work with your insurance company to select a specialty pharmacy for you. Ventavis is not available at your neighborhood pharmacy, so a specialty pharmacy works with you to train you on the I-neb AAD—the device used to take Ventavis—and send you shipments of Ventavis. A PAH Pathways nurse will also call you to see if you have any questions about Ventavis or the I-neb AAD.

If you ever have questions, PAH Pathways gives you a single point of contact for access to Ventavis, reimbursement support, information about financial assistance programs, and information about taking Ventavis. Call 1-866- ACTELION (1-866-228-3546) or visit PAH Pathways to learn more.

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A: Paying for therapy is a concern for many people. Ventavis is paid for by many different health insurance plans. PAH Pathways and your specialty pharmacy will work with your insurance company to get Ventavis for you. If you don’t have health insurance, Actelion—the maker of Ventavis—may be able to help. PAH Pathways, Actelion’s service and support program, has financial assistance available to help eligible people pay for their therapy. Visit PAH Pathways or call 1-866-ACTELION (1-866-228-3546) to learn more.

You may want to contact the CVC, an independent, nonprofit third-party organization, for information about how to receive financial assistance. If you qualify, the CVC may be able to offer you assistance with insurance policy premiums, emergency financial needs, and peer support programs. Contact the CVC toll-free at 1-888-267-1440 or visit www.caringvoice.org

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A: The I-neb AAD is the small portable device used to take Ventavis. The I-neb AAD is designed to work with you and adjust to how you breathe to make sure you get the right dose. Because everyone breathes differently, individual treatment times will vary and should take between 4 to 10 minutes per treatment. Ventavis is approved for use 6 to 9 times daily. Your doctor will let you know how many times to use it each day. If you have longer treatment times, learning about the ABCs of Ventavis (Angle, Breathing, and Cleaning) can help you manage your treatment time to keep them as short as possible while still giving you the right dose.

Your doctor may prescribe Ventavis 20 mcg/mL if you have long treatment times and are maintained at the 5 mcg dose. The higher concentration of medicine lowers the amount of solution you need to take by 50%, which gives you shorter treatment time.²

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A: Ventavis has convenient once-a-day cleaning to help reduce the time you spend cleaning each day. You can clean your I-neb AAD parts and the chamber (mesh) lids at the end of the day after completing all of your treatments. This should take about 5 minutes. Once a week you boil the parts and chamber lids for 6 to 10 minutes. Visit the I-neb learning center to learn more about once-a-day cleaning of the I-neb AAD parts used to take Ventavis.

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A: Ventavis has been prescribed to thousands of people with PAH like you who have made Ventavis an important part of their lives, because it can help treat their NYHA Class III and IV PAH. Many find that the I-neb AAD’s portability makes it convenient to fit Ventavis into their busy schedules. Because the I-neb AAD is small and lightweight, you can take your treatments almost anywhere at anytime. Some people take treatments while parked in a car, at the office, at a mall, and other places when they are away from home. Take Ventavis as directed by your doctor, but no more often than once every two hours. You can see video clips of actual patients talking about how they have made Ventavis a part of their lives on the Ventavis Patient Stories page.

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A: Chances are that you will have plenty of space because Ventavis doesn’t require a large amount of equipment. The I-neb AAD, charging dock, distilled water, and bowls for cleaning are the main items you need. You should be able to store your medication and equipment in a kitchen cabinet or a small tote bag—your medication needs to be stored in a clean dry place away from extreme temperatures.

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A: Most supermarkets and drugstores carry distilled water. Look in the bottled-water aisle.

It’s important to use only distilled water for your daily cleaning and once-weekly boil. Normal tap water has minerals in it that can clog the tiny holes in the chamber (mesh) lids. Keeping the meshes clear of minerals is key to maintaining the I-neb AAD delivery system and to helping you get the most out of your Ventavis treatments. Be sure you purchase distilled water and not spring water. Spring water can still have minerals in it, while distilled water has had all the minerals removed.

Many supermarkets also offer delivery services, so you don’t have to worry about getting the distilled water to your house. Check with your local supermarket to see if this service is available.

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A: The I-neb AAD is designed to work with you and adjust to how you breathe. Because Ventavis is an inhaled PAH therapy, it goes to the lungs—the site of disease for people with PAH. When taking your treatments, try your best to breathe normally in a slow and steady manner. Try counting one-one thousand, two-one thousand, three-one thousand each time you breathe in. Talk with your doctor if you have problems breathing properly while taking treatments. Your healthcare team can show you tools that will let you know the best way for you to breathe when taking Ventavis.

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A: You don’t have to be a technical person to take Ventavis with the I-neb AAD. Thousands of people have made the I-neb AAD part of their lives, and it’s easy to see why. It’s designed to be easy to use, it adapts to the way you breathe, and it’s fully portable, so you can take it with you when you leave the house. Before starting Ventavis everyone receives training from nurses or respiratory therapists on how to use the I-neb AAD. Keep a positive attitude and you can get the hang of it. If you have any questions about the I-neb AAD, you can call PAH Pathways at 1-866-ACTELION (1-866-228-3546), contact your specialty pharmacy, or learn more on this website at the I-neb Learning Center.

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A: You don’t have to be at home to take your treatments. When fully charged, the I-neb AAD battery will last for up to 40 treatments, so you don’t need to stay at home. Because the I-neb AAD is small and portable, many people take treatments in places such as parks, in an airplane when traveling, or even at the mall. Be sure to plan ahead and bring everything with you when you leave the house so you won’t miss a treatment.

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A: Yes, you can take your treatments at work. You can take treatments wherever you feel comfortable, as long as you can stay still and keep the I-neb AAD at a 90-degree angle. You may find it useful to speak with your supervisor and/or coworkers beforehand to explain your treatments.

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A: You can be flexible and decide when and where you take your treatments each day, but you should always take Ventavis exactly as prescribed by your doctor. For example, if your doctor prescribed Ventavis 6 times a day, take it once when you wake up, once before going to bed, and at 4 other times throughout the day. You do not need to take Ventavis the same time every day, so you have flexibility to fit Ventavis into your schedule as it changes. Make sure that your treatment sessions are spaced at least 2 hours apart.

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A: If you happen to miss a dose, you don’t need to be worried. Simply take a treatment as soon as you’re able to, or continue with your regular dosing schedule and take your next planned treatment. Make sure that you don’t take Ventavis more than once every 2 hours. If you end up taking less than the number of treatments your doctor has asked that you take, go back to the prescribed amount the next day.

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A: Remember you can rest during your treatments. When you take your next treatment try taking a rest after the first 3 minutes for about 30 seconds. Then start breathing on the I-neb AAD System again. You can repeat this until you complete the treatment. Also, when you breathe out, don't push the air out, just relax and let your out-breath happen naturally.

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A: If you experience treatment times longer than 4 to 10 minutes, you should notify your doctor to discuss options to shorten your treatment times. Learning about the ABCs of Ventavis (Angle, Breathing, and Cleaning) can help you manage your treatment times to keep them as short as possible. Because Ventavis is only delivered when you breathe in, you can shorten your treatment times by taking longer breaths. Try counting one-one thousand, two-one thousand, three-one thousand each time you breathe in. Your doctor also has access to tools that can show you how to take longer breaths.

The I-neb AAD can deliver Ventavis fastest when it’s held level. Hold the I-neb AAD at a 90-degree angle to your mouth, like you would when eating a hamburger. You can also rest your elbows on the table while holding your I-neb AAD to make it easier.

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A: No. Most patients do not usually take Ventavis at night. During the original clinical studies for Ventavis, around 90% of patients slept through the night without taking Ventavis. This means you can receive the benefits of Ventavis without waking up at night to take any doses. Some patients may choose to take a dose when they wake up at night. You should talk to your doctor to discuss your specific treatment schedule and what works best for you.

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A: Yes, you can take Ventavis and continue to wear your oxygen in your nose. Remember if you use a pulse oxygen system; turn it to continuous flow when taking your Ventavis treatment.* The I-neb AAD System will deliver Ventavis when you breathe in through your mouth. You will still get your oxygen because your nose acts as a reservoir (you don't have to breathe in through your nose in order to get your oxygen). When you breathe in through your I-neb AAD System, you will receive both your Ventavis and your oxygen. You can turn back to pulsed oxygen delivery after you have finished your Ventavis treatment. Speak with your doctor about the proper oxygen setting you should use while taking your Ventavis treatment.

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The Path Ahead

Q: Where can I go if I have other questions?

A: A PAH Pathways Counselor will be glad to help you with questions about your Ventavis therapy—whether it’s now when you’re first starting up, or if you have questions later on during therapy. PAH Pathways, Actelion’s service and support program, gives you a single point of contact for access to Ventavis, reimbursement support, information about financial assistance programs, and information about taking Ventavis. To learn more, please call 1-866-ACTELION (1-866-228-3546) or visit PAH Pathways.

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