RaptorCares

RaptorCares is a patient-support program created with input from people with nephropathic cystinosis and caregivers who understand the challenges and successes you may experience. RaptorCares provides valuable services to support you on your journey to manage cystinosis.

For the general nephropathic cystinosis community, RaptorCares offers important information about nephropathic cystinosis, as well as valuable tools to help you better manage the challenges you may face along the way.

For eligible people on PROCYSBI® (cysteamine bitartrate) delayed-release capsules, RaptorCares offers access and reimbursement support to help you stay on track with your treatment.

To get started with RaptorCares, call 855-888-4004

RaptorCares: Supporting you every step of the way

Services and support offered through RaptorCares include:

  • Reimbursement assistance for insured patients
    • RaptorCares can advocate on your behalf to help ensure coverage for PROCYSBI and to resolve contested claims
    • Copay assistance is available for eligible patients and may reduce the out-of-pocket costs for PROCYSBI
  • Reimbursement assistance for underinsured patients
    • RaptorCares helps find available alternate or supplemental insurance
    • Qualified patients may be eligible for financial assistance to help cover premiums
    • If no insurance coverage can be secured, the RaptorCares program may provide PROCYSBI to eligible patients
  • Travel assistance
  • White blood cell (WBC) cystine testing assistance
    • RaptorCares also offers reimbursement assistance to cover the cost associated with WBC cystine testing for eligible patients, when those patients do not receive reimbursement from their insurance providers

Patient Access Managers

Your Patient Access Manager (PAM) is available to support you as a personal resource. Your dedicated PAM will assist you in getting off to a great start with PROCYSBI and help you along the way. Your PAM can help in the following areas:

  • Insurance*
    • Review and discuss insurance challenges
    • Troubleshoot problems with insurance payments and prescription refills
    • Connect you with copay assistance or co-insurance programs
  • Travel and financial assistance*
    • Discuss options for travel to see your cystinosis doctor
    • Discuss support for out-of-pocket costs for white blood cell (WBC) cystine testing
  • Life transitions
    • Help you stay on track when you are going through life changes, such as:
      • Moving to a new city
      • Changing jobs or going off to college
      • Switching schools or teachers
      • Transitioning to adult care
      • Changing doctors
  • Linking you to the cystinosis community
    • Connect you with other people living with cystinosis
    • Inform you of cystinosis events in your area
    • Introduce you to cystinosis advocacy groups

*Assistance may include the cost of transportation, lodging, or meals. Service provided by the PAM are for eligible and/or qualified patients only. Please contact your PAM to determine eligibility.

To connect with your PAM, just call 844-830-CARE (2273)
PAMs are also available via e-mail or text, or in person

Accredo Specialty Pharmacy

PROCYSBI is only available through Accredo, a specialty pharmacy. RaptorCares and Accredo work together to make sure eligible patients have access to PROCYSBI.

RaptorCares**
insurance RaptorCares works directly with your insurance
you-and-doctor Keeps in touch with you and your doctor
phone-chat Refers you to other options for financial support
Accredo Specialty Pharmacy
woman Provides you with a dedicated contact person
calendar Reminds you when it’s time to schedule and ship refills
truck Delivers to your door
You
you-and-doctor Obtain a PROCYSBI prescription from your doctor
keep-in-touch Return calls and keep in touch with RaptorCares
phone" Return Accredo Specialty Pharmacy’s phone calls

**RaptorCares provides personalized support for eligible patients and caregivers in the United States who are prescribed PROCYSBI. Call for eligibility for assistance with the WBC testing and travel related to cystinosis care.

For shipments, call 844-404-7848 or fax 888-302-1028
Dedicated phone lines are available from 7 a.m. to 7 p.m. CST

Patient Mentor Program

Phone-based peer support

logiAre you interested in speaking with someone about nephropathic cystinosis? Someone who has been through the same experiences you are going through now?

With the Connected Voices of Cystinosis Mentor Program, now you can. This Raptor-sponsored program matches you with someone who has been through similar experiences with cystinosis and PROCYSBI for a Mentor phone call. Ask him or her questions, share your personal experiences, and get a new perspective from someone who understands what it’s like to live with nephropathic cystinosis.

The Mentors share their personal experiences of living with nephropathic cystinosis treated with PROCYSBI; they cannot and do not provide medical advice.

All of our Mentors are here to listen, and they’re excited to talk with you! If you’re ready to connect, just follow the simple steps below.

CallUs
Call us
Dial 844-247-1633. We’re available 8:30 a.m. to 6:00 p.m. ET Monday through Friday.

CallUs
Get matched
Answer a few questions to help us find the right Mentor for you, then we’ll help schedule the best time for your first call with your Mentor.

CallUs
Connect and share
At your scheduled time, your Mentor will give you a call at the number you provided during registration.

Meet your Mentors

Natasha

  • Hawaii
  • 29
  • Natasha fiercely loves her family and will do anything to protect them, especially her son and daughter who both have cystinosis. After caring for her first child with cystinosis, Natasha thought she’d be an expert when her second was diagnosed—turns out her children are as different as night and day! Throughout their journey, Natasha has learned the importance of finding the right healthcare team, keeping her children aware of their condition, and how to adapt to living with cystinosis.

Katie

  • Tennessee
  • 23
  • Katie has never known life without cystinosis, and her parents always made sure that taking medication felt as natural to Katie as breathing. As Katie grew up and became more independent, taking control of her own health and treatment came just as naturally to her. Now she spends much of her free time connecting with other people living with cystinosis and encouraging them to be compliant with treatment and take charge of their health.

Fernando

  • Texas
  • 24
  • Fluent in Spanish and English
  • Family is the most important thing to Fernando, and he gladly took on a lot of responsibility very quickly after his little brother was diagnosed with cystinosis. Fernando is incredibly proud of his brother for never letting cystinosis hold him back and for facing each new challenge with a positive attitude. They are both grateful for connecting with other families who are affected by cystinosis, and Fernando is eager to spread knowledge and awareness to others.

Justin

  • Louisiana
  • 34
  • Justin refuses to be defined by his cystinosis, preferring to be known as a fun, outgoing, and joyful person. His parents always kept him informed about what to expect with his health and, as a natural leader, Justin also became a leader in his own health once he got older. As a youth pastor, helping his “kids” through their rough patches is one of the most rewarding aspects of his day. Now he hopes to guide others through the rough patches they face with cystinosis.

Rocky

  • Washington
  • 44
  • Rocky always wanted to be a mom, but having a son with cystinosis was not something she had planned! She learned to trust her mother’s instincts and find doctors who listened to her and her husband. Together, they’ve helped their son gradually take control of his cystinosis and his treatment. Rocky grew stronger as a mother and person through these experiences, and she shows others with cystinosis how to find their own inner strength.

Stephanie

  • Nebraska
  • 36
  • As a child, Stephanie met a treasured friend who also had cystinosis and their journeys seemed to mirror each other—from renal failures to transplants to, regrettably, shared troubles with medication compliance. Fortunately, Stephanie’s family helped pull her through, and today she makes the most of her second chance. She encourages others to learn from her and her friend’s mistakes and to realize, as she has, that taking all your medication and finding the right doctor are necessary to living with cystinosis.

If you’re ready to connect, give us a call at 844-247-1633 to be paired with a Mentor!

Resources & downloads

Whether you’re a patient with cystinosis or a caretaker of one, dealing with this disease can seem overwhelming at times. But remember that you’re not alone and that help is available. For additional resources, including support and advice for parents, siblings, and students, see the links below.

Educational and social support

Children with cystinosis typically display normal intelligence and average school performance and should be encouraged to pursue their educational interests. Nevertheless, some children may have learning problems related to visual processing, math, and spelling.1 In addition, problems with attention, social interaction, and academic performance can occur. However, with the right support, there’s no reason that children with cystinosis need to limit themselves.

Individualized education programs and 504 plans

A 504 plan can help students with chronic conditions receive modifications and accommodations that will ensure their academic success in a general education setting. For example, a student with cystinosis who has a 504 plan can arrange to have extra time for tests and homework assignments and permission to wear sunglasses due to light sensitivity, among other helpful accommodations.

An individualized education program (IEP) is a written document that guides the education of a student with a disability. Most students between 3 and 21 years of age who are classified with a disability according to the Individuals with Disabilities Education Act of 2004 (IDEA) will have a current IEP.3 Because each IEP is designed for a single student, it is truly an individualized document.4

It is not uncommon for a child with cystinosis to have a 504 plan or IEP in place. An IEP can help a student with cystinosis get additional support to aid with learning challenges. To learn more about 504 plans and IEPs, including how to write one for your child with cystinosis, see the links below.

PROCYSBI downloads

Download helpful tools and information about PROCYSBI.

Cystinosis organizations, advocacy groups, and other resources

Visit these helpful websites for additional information and support for living with cystinosis.

References

1. Gahl WA, Thoene JG, Schneider JA. Cystinosis. N Engl J Med. 2002;347(2):111-121.

2. US Department of Education. “Guide to the Individualized Education Program.” Available at: http://www2.ed.gov/parents/needs/speced/iepguide/index.html. Accessed October 10, 2012.

3. Gibb G, Dyches TT. Guide to writing quality Individualized Education Programs. 2nd ed. Boston, MA: Pearson Education, Inc.; 2007.

4. Burke P. Brothers and sisters of disabled children. United Kingdom: Jessica Kingsley Publishers; 2004:119-127.

What is PROCYSBI (Pro-CIS-bee)?

PROCYSBI® (cysteamine bitartrate) delayed-release capsules is a prescription medicine used to treat a medical condition called nephropathic cystinosis, in adults and children 2 years of age and older.

It is not known if PROCYSBI is safe and effective in children under 2 years of age.

Who should not take PROCYSBI?

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

What should I tell my doctor before taking PROCYSBI?

Before you take PROCYSBI, tell your doctor 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
  • have any other medical conditions
  • 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 medicines that you take, including prescription and over-the-counter medicines, vitamins, 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 heavy 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:

  • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones. These changes may include 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 develop ulcers and bleeding in their stomach or bowel. Tell your doctor right away if you get stomach-area pain, nausea, vomiting, loss of appetite, or vomit blood.
  • 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.

The most common side effects with PROCYSBI include:

  • vomiting
  • nausea
  • stomach (abdominal) pain
  • breath odor
  • diarrhea
  • skin odor
  • tiredness
  • skin rash
  • headache

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PROCYSBI. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at 1-800-FDA-1088.