RRD PS Opt-In Form
Enrollment for patient support and assistance
Complete Online Formpatient support
Living with acute intermittent porphyria (AIP) can be challenging, but there is help available to guide you as you learn to live with this condition.
RRD Patient Solutions
Recordati Rare Diseases Patient Solutions (RRD PS) is here to support your treatment with PANHEMATIN. When you enroll in RRD PS, you will have access to a dedicated support team.
To participate, you will need to complete the RRD PS Opt-In Form to enroll.
RRD PS Case Managers assist with:
- Benefit Investigation. Help you determine whether your insurance will cover PANHEMATIN.
- Prior Authorization and Appeals. Help support you throughout the prior authorization process by navigating insurance requirements and providing educational resources.
- Financial Assistance for Eligible Patients. If eligible, provide you with support and resources to alternative funding solutions if you are underinsured or uninsured.
Therapeutic Education Managers (TEMs)* assist with:
- Education. Provide you with education on AIP and PANHEMATIN treatment.
- One-on-one Support. Help you create a personalized AIP Attack Treatment Plan to help navigate your treatment journey.
- Resources. Connect you with available educational resources on AIP.
*TEMs are paid to provide educational services on behalf of Recordati Rare Diseases. They don’t provide medical advice. Patients should always talk to their healthcare provider about any healthcare needs.
Financial Assistance
If you are eligible, RRD PS Financial Assistance Programs can provide support if you are unable to access PANHEMATIN.
Copay Assistance Program
RRD PS Copay Assistance Program may be able to help with eligible patients’ treatment costs, such as out-of-pocket costs, copayments or coinsurance, if they meet program requirements.†
Patient Assistance Program
RRD PS Patient Assistance Program provides financial support for eligible patients who have limited access to treatment due to insurance issues and/or financial challenges.
†The RRD PS CoPay Program (the “Program”) is not valid for prescriptions covered by or submitted for reimbursement under Medicare, Medicaid, VA, DoD, TRICARE, or similar federal or state programs including any state pharmaceutical assistance programs. The Program is not valid where prohibited by law, and savings may vary depending on patients’ out-of-pocket costs. Recordati Rare Diseases reserves the right to modify or terminate the Program at any time without notice. Patients will receive all Program details upon registration. Approval is not guaranteed. Additional terms and conditions apply.
Online Resources
These tools and resources can help you and those close to you become educated about AIP, and better prepared for an AIP attack:
AIP Medical Emergency Letter
Keep important information with you for an emergency. Your doctor can create a medical emergency letter for you at panhematin.com/hcp/letter.
Talk to Your DoctorAIP Symptom Checklist
Common signs of AIP to learn about and understand
DownloadAIP Attack Plan Worksheet
Complete with your doctor to create a readiness plan
DownloadAIP Discussion Guide
Help with starting a conversation about AIP
DownloadLiving with AIP Brochure
Learn how to manage the challenges of AIP
DownloadThese organizations can help provide additional information about AIP:
The American Porphyria Foundation
The American Porphyria Foundation (APF) educates physicians and the general public, raises funds for research, and advocates for better policy and patient care.
Visit Site
The National Organization for Rare Diseases
The National Organization for Rare Diseases (NORD) is a federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases.
Visit Site
The Porphyrias Consortium
The Porphyrias Consortium, part of the Rare Diseases Clinical Research Network founded by the National Institutes of Health (NIH), benefits patients and physicians by enabling a large-scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from rare disorders.
Visit Site
The United Porphyrias Association
The United Porphyrias Association is committed to improving the quality of life of the porphyria community and is focused on advancing disease awareness, research, and therapies for all the porphyrias.
Visit SiteCommon Questions
These common questions and answers about AIP can help you better understand how to live with and manage AIP:
Acute Intermittent Porphyria is a rare inherited disorder caused by a partial lack of an enzyme needed to make heme, a substance that carries oxygen to all parts of your body. This enzyme deficiency results in the build-up of certain chemicals in your body, causing symptoms to develop. “Acute intermittent” means that symptoms, or “attacks,” may occur for a set period of time, then go away, only to return later. Left untreated, AIP attacks can cause damage to your body such as to your brain and nervous system.
The most common symptom of AIP is severe abdominal pain. Other common symptoms include vomiting, constipation, fast heart rate, pain in different areas of your body, muscle weakness, and mental symptoms like depression or changes in behavior. During AIP attacks, you may not have all of these symptoms. Talk to your family and friends about your specific symptoms and how they make you feel.
AIP attacks are more likely to occur when you’re exposed to things that upset your body’s chemical balance. These “triggers” may include use of hormones or normal hormone fluctuations in your body, use of certain prescription or illegal drugs, use of alcohol or cigarettes, fasting or crash dieting, infections, surgery, or stress. Talk to your family and friends about your triggers and ways to help manage them.
Because the symptoms of AIP are common in other conditions and doctors are not always familiar with this rare disease, a diagnosis of AIP may be difficult to obtain. But an accurate diagnosis is critical for getting the right treatment. Diagnosis may involve laboratory tests that analyze chemicals in your urine and a genetic DNA test.
AIP is inherited, so family members of someone who has AIP have a greater risk of developing the disorder. Most people with the enzyme deficiency never have symptoms, and some people may have only mild symptoms throughout life. But it’s important to remember that symptoms can develop and become serious very quickly. Therefore, family members may want to talk to their doctors about genetic testing for AIP.
Although there is no cure for AIP, treatment is available. PANHEMATIN is a prescription medication used to relieve recurrent attacks of AIP related to the menstrual cycle in affected women, after initial carbohydrate therapy is known or suspected to be inadequate. The goal of PANHEMATIN is to reduce the chemical build-up that causes symptoms. Attacks of porphyria may progress to a point where irreversible nerve damage has occurred. PANHEMATIN therapy is intended to prevent an attack from reaching the critical stage of nerve breakdown. PANHEMATIN is not effective in repairing nerve damage that has already occurred.
What is PANHEMATIN?
PANHEMATIN (hemin for injection) is a prescription medicine used to relieve repeated attacks of acute intermittent porphyria related to the menstrual cycle in affected women, after initial carbohydrate therapy is known or suspected to be inadequate.
Limitations of Use
- Before administering PANHEMATIN, consider an appropriate period of carbohydrate loading (i.e., 400 g glucose/day for 1 to 2 days).
- Attacks of porphyria may progress to a point where irreversible nerve damage has occurred. PANHEMATIN therapy is intended to prevent an attack from reaching the critical stage of nerve breakdown. PANHEMATIN is not effective in repairing nerve damage that has already occurred.
IMPORTANT SAFETY INFORMATION
Who should not use PANHEMATIN?
Do not take PANHEMATIN if you are allergic to this drug.
Before starting PANHEMATIN, tell your healthcare provider (HCP) about all your medical conditions, including if you are pregnant or plan to become pregnant, breastfeeding or plan to breastfeed. Tell your HCP about all the...
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INDICATION(S) AND IMPORTANT SAFETY INFORMATION
What is PANHEMATIN?
PANHEMATIN (hemin for injection) is a prescription medicine used to relieve repeated attacks of acute intermittent porphyria related to the menstrual cycle in affected women, after initial carbohydrate therapy is known or suspected to be inadequate.
Limitations of Use
- Before starting PANHEMATIN, your doctor may consider an appropriate trial of carbohydrates or sugar per day for 1 to 2 days.
- Attacks of porphyria may progress to a point where irreversible nerve damage has occurred. PANHEMATIN therapy is intended to prevent an attack from reaching the critical stage of nerve breakdown. PANHEMATIN is not effective in repairing nerve damage that has already occurred.
IMPORTANT SAFETY INFORMATION
Who should not use PANHEMATIN?
Do not take PANHEMATIN if you are allergic to this drug.
Before starting PANHEMATIN, tell your healthcare provider (HCP) about all your medical conditions, including if you are pregnant or plan to become pregnant, breastfeeding or plan to breastfeed. Tell your HCP about all the medicines you take, including any prescription and over-the-counter medicines, vitamins, or herbal supplements.
What are the possible side effects of PANHEMATIN?
PANHEMATIN may cause side effects including:
- Vein inflammation is possible. Your doctor will use a large arm vein or a central line to administer PANHEMATIN to minimize the possibility of vein inflammation.
- Elevated iron levels may occur. Your doctor must monitor your iron levels if you receive multiple courses of PANHEMATIN.
- PANHEMATIN has a short-term and mild blood thinning effect. Avoid blood thinners during PANHEMATIN therapy.
- Reversible kidney shutdown has occurred when too high a dose of PANHEMATIN was given in a single dose.
- PANHEMATIN may carry a risk of transmitting agents that can cause infections, such as viruses, and theoretically, the Creutzfeldt-Jakob disease (CJD) agent or other unknown agents.
The most common side effects of PANHEMATIN include headache, fever, infusion site reactions, and vein inflammation.
These are not all the possible side effects of PANHEMATIN. Call your HCP for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Call 1-800-FDA-1088 or visit www.fda.gov/medwatch.
When taking PANHEMATIN, do not take drugs such as estrogens (e.g., oral contraceptives), barbiturates (drugs that help with sleep and used to treat epilepsy) or steroids (body hormone-like drugs), because such drugs can trigger an attack or make an attack worse.
PANHEMATIN® (hemin for injection), for intravenous infusion only, is available as powder for reconstitution in 350 mg vials.
Please see the accompanying full Prescribing Information.
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How to Order PANHEMATIN
Contact your primary wholesaler or Cencora.
Contact Cencora, the exclusive distributor of Panhematin, or your primary wholesaler.
| Orders placed by | Delivered |
|---|---|
Monday-Thursday by 6:30 pm CT |
Priority Overnight for 10:30 am delivery* |
Friday by 6:30 pm CT |
Priority Overnight for Monday 10:30 am delivery* |
Saturday delivery |
Saturday delivery must be requested when order is placed. |
*10:30am delivery in most areas.
Earlier, same day, and weekend delivery are available with an additional shipping cost.
Be sure to include any specific delivery instructions when ordering.
PANHEMATIN is supplied as a sterile, lyophilized black powder in single dose dispensing vials (NDC 55292-702-54) in a carton (NDC 55292-702-55). The vial stopper contains natural rubber latex. Store lyophilized powder at 20-25°C (68-77°F).
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