PERSONALIZED SUPPORTSupport When You Need It

The Horizon By Your Side team is led by a Patient Access Liaison (PAL). The PAL is a dedicated support partner who helps investigate, explain, and educate on each step of your treatment experience. They will be your partner to support and champion you while accomplishing your treatment goals.

The PAL can educate and assist you with:

Picture of Patient Access Liaison

Picture of Patient Access Liaison

Dori, Patient Access Liaison

  • Learning about insurance coverage criteria and approval process
  • Understanding cost assistance options
  • Discussing what to expect at the start of treatment
  • Coordinate delivery with the specialty pharmacy to schedule shipments of your medicine
  • Receiving refill reminders to help you stay on PROCYSBI® (cysteamine bitartrate) as your doctor has instructed
  • Discovering ways to connect with others living with nephropathic cystinosis, if interested (examples include in-person gatherings, online/virtual meetings, and even getting introduced to patient groups and mentors)

Watch how Horizon By Your Side can help you with your PROCYSBI treatment

Read Transcript

Kelly, Narrator: A new diagnosis can make you feel alone. Outside of just processing the change to your life, understanding everything that goes into your treatment can feel overwhelming.

Horizon By Your Side is a patient support program designed specifically for someone prescribed a Horizon medication. Our dedicated team is your partner, committed to providing non-medical, personalized support so you can start and continue treatment as your doctor recommends.

Once you are prescribed a Horizon medication, you will work with your doctor to be enrolled into Horizon By Your Side and get matched with a Patient Access Liaison, or PAL. Or in some cases, a clinical nurse educator – a CNE.

Lindsey (PAL) talking to Khash: … I’m available to help you as you need for anything that might come up. I’m basically your advocate, your cheerleader, your friend. I’m here to support you through the entire journey.

Khash: My primary care physician said, “We’re going to have a Patient Access Liaison get in contact with you to discuss it further with you, and tell you all the pluses, minuses and all that stuff. Lindsey, really took the time to explain it all to me, including the commitment it’s going to take on my side to get this done.

Kelly, Narrator: A PAL is your partner to support and champion you while accomplishing your treatment goals. Some of the ways your PAL can support you include:
- Learning about insurance coverage and the approval process
- Understanding potential costs or cost assistance options
- Sharing additional resources, connect to advocacy groups, or connect with others if interested

Roxie: I did work with the Patient Access Liaison, more commonly known as PALs, and she kept in touch with me. I was really worried about insurance and about out-of-pocket cost. Although I was willing to do whatever it took. She checked out my insurances and I am so blessed because it was 100% covered.

Randi: They assigned me a Patient Access Liaison after I was approved for treatment and just helped guide me through the process as far as what to expect, the process that I was going to go through and just to be there for general support for me.

Melanie: She really took the time to explain everything and go through it and has been there for me for every single question ever since.

Kelly, Narrator: With everything you and your caregivers have going on, it can be difficult to fit treatment into your routine. Your PAL can help you understand what to expect at the start of treatment, how treatment can fit into your routine and send reminders to help you stay on track.

Carol (PAL): I want them to understand that I will be a point person for them. First and foremost, I’m there to listen and also let them know I’m there to support them through the process. And ultimately to empower them.

Latoya: They remind you of things that you typically forget. Even like when it comes to testing kits, you know. I was able to work out a plan. The PAL also will also make sure, like when it’s time to renew insurance, that at the end of the year you know, they shoot you a text messages to call. So I think they’re a great resource. They really are.

Melanie: They call me to do refills earlier than I need them so that I don’t run out of the medication.

Carol (PAL): We don’t want patients to feel that they’re just out there alone and floating in the space of the unknown. They can reach out to us at any time. We’re always available to them.

Kelly, Narrator: The Horizon By Your Side team can also help you become more comfortable with your diagnosis, even visiting to teach you hands-on how to take your medication and help you find medicine in case of an emergency.

Jerry (CNE): As a Clinical Nurse Educator my responsibility and my job is to make sure that our patients are well taken care of and that their needs are met. We also have communication with their primary doctors to make sure that they know and they are up-to-date in their treatment.

Shannon (CNE): I teach them about lifestyle modifications needed to stay healthy, a lot of disease state education.

Kelly, Narrator: We can also help connect you with a peer mentor, who are other Horizon patients that are going through a similar experience.

Randi: I may talk to three or four newly diagnosed patients a week. They want to know what the experience was like for me.

Kelly, Narrator: Horizon By Your Side also has many other resources available to patients and caregivers through our website, HorizonByYourSide.com. There you’ll find information about enrollment, treatment cost assistance options, treatment planning, and many other resources to assist you during your treatment experience.

In the end, Horizon By Your Side is designed to be just that …. by your side.

Melanie: I was so happy because I was so scared. She was there from the very beginning, I am trying to manage this disease by myself, but I’m not really by myself because I have these people in my corner that are available to me at any time.

Roxanne: After being so dismissed and feeling like I was doing this by myself, it was so helpful to have somebody who understood, who knew it. It gave me hope and it let me know that at some point, I was going to be able to go on with my life and not be held back by this anymore.

Learn about insurance coverage criteria and approval process

Insurance and Approval

Learn more about how to get your PROCYSBI medication

Getting PROCYSBI

USE and IMPORTANT SAFETY INFORMATION 

What is the most important safety information I should know about PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones, such as stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.
  • Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Tell your doctor right away if you get a skin rash. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI. 
  • Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate may develop ulcers and bleeding in their stomach or bowel. People treated with PROCYSBI may also develop abnormal swelling and narrowing of the large bowel which must be treated promptly. Tell your doctor right away if you get abdominal pain, bloody or persistent diarrhea, bloating, nausea, vomiting, loss of appetite, vomit blood, poor weight gain or weight loss.
  • Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.
  • Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.
  • Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early.

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye, or pain with eye movement.

What is PROCYSBI?

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a prescription medicine used to treat nephropathic cystinosis in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

Before taking PROCYSBI, tell your doctor about all your medical conditions, including if you:

  • drink alcohol.
  • have a skin rash or bone problems.
  • have or have had stomach or bowel (intestinal) problems including ulcers or bleeding.
  • have a history of seizures, lack of energy, unusual sleepiness, depression, or changes in your ability to think clearly.
  • have liver or blood problems.
  • are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
  • are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI.

Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

  • Do not drive or operate machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.
  • Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • See "What is the most important information I should know about PROCYSBI?"

The most common side effects of PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, pink eye, diarrhea, cold, tiredness, flu, headache, problems with body salts or electrolytes, infection of ear, nose or throat, joint pain.

These are not all the possible side effects of PROCYSBI. Call your doctor for medical information about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, click here for the Patient Package Insert and discuss with your doctor. 

USE and IMPORTANT SAFETY INFORMATION 

What is the most important safety information I should know about PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones, such as stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.
  • Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Tell your doctor right away if you get a skin rash. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI. 
  • Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate may develop ulcers and bleeding in their stomach or bowel. People treated with PROCYSBI may also develop abnormal swelling and narrowing of the large bowel which must be treated promptly. Tell your doctor right away if you get abdominal pain, bloody or persistent diarrhea, bloating, nausea, vomiting, loss of appetite, vomit blood, poor weight gain or weight loss.
  • Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.
  • Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.
  • Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early.

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye, or pain with eye movement.

What is PROCYSBI?

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a prescription medicine used to treat nephropathic cystinosis in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

Before taking PROCYSBI, tell your doctor about all your medical conditions, including if you:

  • drink alcohol.
  • have a skin rash or bone problems.
  • have or have had stomach or bowel (intestinal) problems including ulcers or bleeding.
  • have a history of seizures, lack of energy, unusual sleepiness, depression, or changes in your ability to think clearly.
  • have liver or blood problems.
  • are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
  • are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI.

Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

  • Do not drive or operate machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.
  • Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • See "What is the most important information I should know about PROCYSBI?"

The most common side effects of PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, pink eye, diarrhea, cold, tiredness, flu, headache, problems with body salts or electrolytes, infection of ear, nose or throat, joint pain.

These are not all the possible side effects of PROCYSBI. Call your doctor for medical information about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, click here for the Patient Package Insert and discuss with your doctor.