Finding Power to Persevere with PAH

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by Johnson & Johnson |

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*Jennifer is a patient advocate through the SHARE Network, a program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring. She is a real patient with PAH and was compensated by Actelion Pharmaceuticals US, Inc., for her time to develop this content. This story is Jennifer’s personal experience, and individual experiences may vary.

 

 

For many patients, hearing that they have been diagnosed with pulmonary arterial hypertension (PAH) can be an overwhelming – and scary – experience.1 PAH is a rare, progressive disease and patients can rapidly deteriorate, even if they are presenting as mildly symptomatic.2,3 As emphasized in clinical guidelines to treat this disease, it’s critically important that patients are diagnosed early in their disease journey, that their symptoms are closely monitored and that they are escalated to the right treatment plan in order to maintain a low-risk status.3

Patients may feel reassured when they hear from others who have walked in their shoes. As such, it’s important to shine a light on their stories and share resources available to the PAH community so they are informed and empowered to take on their PAH.

 

Jennifer’s Story*

When Jennifer, a mom of two, was diagnosed with PAH, it was important for her to understand how to manage her disease, and the options available to help slow its progression.

“It was important for me to advocate for myself,” she says, “I was very clear about my expectations and apprehensions about my treatment options. I went back and forth with my doctor at the time and I said to him, ‘It may be your job to get me on a treatment, but it’s my job to try to stay on it and keep going.’”

Jennifer’s provider recommended UPTRAVI® (selexipag), a prescription medication used to treat PAH in adult patients. UPTRAVI® can help delay (slow down) the progression of a patient’s disease and lower their risk of being hospitalized for PAH when used alone or in combination with other PAH medications.4

 

Select Important Safety Information

UPTRAVI® should not be taken by someone who takes gemfibrozil, because this medicine may affect how UPTRAVI® works and cause side effects, or if someone is allergic to selexipag or any of the other ingredients in UPTRAVI®.4 Please scroll down to continue to read Important Safety Information.

Jennifer worked closely with her care team to determine her personalized UPTRAVI® maintenance dose during a process called titration. View Jennifer’s story, and learn about what motivated her to keep going throughout her PAH treatment journey:

 

Resources to Help Manage a New Care Plan

Starting a new medication may come with unexpected challenges, including some trial and error.2-4 Once a patient and their healthcare provider have decided that UPTRAVI® is the right care plan for that individual, Johnson & Johnson has resources to help patients.

 

Janssen CarePath

Janssen CarePath can help patients and their loved ones find the resources they may need to get started and stay on track with their treatment plan.

A personally assigned Janssen CarePath Care Coordinator can:

  1. Review health plan benefits to help answer questions about insurance coverage for UPTRAVI®
  2. Identify options that may help make UPTRAVI® more affordable, if needed
  3. Connect patients with a dedicated PAH Companion for one-on-one educational conversations and support
  4. Identify and coordinate with a specialty pharmacy to arrange shipment of UPTRAVI®

Learn more and find support at JanssenCarePath.com/UPTRAVI.

 

PAH Companion withMe

Everyone faces PAH differently. Once you and your doctor have decided that UPTRAVI® is right for you, you can join 10,000+ patients5 who have enrolled in PAH Companion withMe.

When you participate in PAH Companion withMe, you’ll have access to:

  • My PAH Companion. One-on-one conversations with a trained, dedicated PAH Companion —someone who specializes in helping people living with PAH. Your PAH Companion will communicate with you via phone, email, or text.
  • My Resources. Educational resources for you and your loved ones to help with your prescribed Janssen PAH medication, tailored to your specific needs, questions, and interests.
  • My Tips. Ongoing support and education on living with PAH to help you partner with your healthcare team and engage with your support network.
  • My Community. Connection to peer support groups, current PAH information and resources, and digital tools to help you track and monitor your health.

Ready to create an account? Join at pahcompanion.com.

PAH Companion withMe is limited to education about your Janssen PAH therapy, its administration, and/or PAH. It is not intended to provide medical advice, replace a treatment plan you receive from your healthcare team, or serve as a reason for you to start or stay on treatment.

PAH Companion withMe requires a completed patient authorization form to enroll.

 

INDICATION AND IMPORTANT SAFETY INFORMATION

What is UPTRAVI®?

UPTRAVI® (selexipag) is a prescription medicine used to treat pulmonary arterial hypertension (PAH, WHO Group 1), which is high blood pressure in the arteries of your lungs.

UPTRAVI® can help delay (slow down) the progression of your disease and lower your risk of being hospitalized for PAH.

It is not known if UPTRAVI® is safe and effective in children.

IMPORTANT SAFETY INFORMATION

  • Do not take UPTRAVI® if you take gemfibrozil because this medicine may affect how UPTRAVI® works and cause side effects
  • Do not take UPTRAVI® if you are allergic to selexipag or any of the ingredients in UPTRAVI®
  • Before you take UPTRAVI®, tell your healthcare provider about all your medical conditions, including if you:
    • Have liver problems
    • Have narrowing of the pulmonary veins (veins in your lungs). This is called pulmonary veno-occlusive disease (PVOD)
    • Are pregnant or plan to become pregnant. It is not known if UPTRAVI® will harm your unborn baby
    • Are breastfeeding or plan to breastfeed. It is not known if UPTRAVI® passes into your breast milk. You and your doctor should decide if you will take UPTRAVI® or breastfeed. You should not do both
    • Are taking any other prescription or over-the-counter medicines, vitamins, or herbal supplements

What are the possible side effects of UPTRAVI®?

The most common side effects are:

  • Headache
  • Diarrhea
  • Jaw pain
  • Nausea
  • Muscle pain
  • Vomiting
  • Pain, redness or swelling at the injection site with UPTRAVI® for injection
  • Pain in arms or legs
  • Temporary reddening of the skin (flushing)
  • Joint pain
  • Low red blood cell count
  • Less appetite than usual
  • Rash

Talk to your doctor if you have a side effect that bothers you or does not go away. These are not all the possible side effects of UPTRAVI®. For more information, ask your doctor or pharmacist.

You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Keep UPTRAVI® and all other medicines away from children.

What other medicines might interact with UPTRAVI®?

UPTRAVI® and other medicines may affect each other, causing side effects. Tell your doctor about all the medicines you are taking. Do not start any new medicine until you check with your doctor.

How should I take UPTRAVI®?

UPTRAVI® Tablets

  • Take UPTRAVI® exactly as your doctor tells you to take it. Usually, your doctor will have you take UPTRAVI® twice a day. Taking UPTRAVI® with food may help you tolerate UPTRAVI® better
  • Swallow UPTRAVI® tablets whole. Do not split, crush, or chew tablets
  • Tell your doctor if you have any form of liver disease. Your doctor may need to change your dose of UPTRAVI®
  • UPTRAVI® is measured in micrograms (mcg). Tablets come in the following strengths: 200, 400, 600, 800, 1000, 1200, 1400, and 1600 mcg

UPTRAVI® given by intravenous (IV) injection

  • Your healthcare provider will give you UPTRAVI® into your vein through an intravenous (IV) line
  • Your healthcare provider will decide how much UPTRAVI® for injection you will receive each day based on your current dose of UPTRAVI® tablets

Please see full Prescribing Information and Patient Product Information.

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References

  1. Archer-Chicko C. Nursing care of patients with pulmonary arterial hypertension. In: Yuan JJ, Garcia J, West J, et al, eds. Textbook of Pulmonary Vascular Disease. 1st Springer. 2011:1531-1558. doi:10.1007/978-0-387-87429-6_111.
  2. Vachiéry JL, Gaine S. Challenges in the diagnosis and treatment of pulmonary arterial hypertension. Eur Respir Rev. 2012;21(126):313-320. doi:10.1183/09059180.00005412
  3. Humbert M, Kovacs G, Hoeper MM, et al. 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension. Eur Heart J. 2022;43(38):3618-3731. doi:10.1093/eurheartj/ehac237
  4. UPTRAVI® Prescribing Information. Titusville, NJ: Actelion Pharmaceuticals US, Inc.
  5. Data on file. Actelion Pharmaceuticals US, Inc. Janssen Commercial Strategy and Operations Team. September 2023.

 

© Actelion Pharmaceuticals US, Inc. 2024 07/24 cp-442483v1