Patient Experience
Help your patients rediscover their everyday
Acute hepatic porphyria (AHP) causes debilitating, potentially life-threatening attacks that can disrupt and overwhelm the lives of patients with the disease.
Mike and Lina are two real patients diagnosed with AHP and taking GIVLAARI. Explore their profiles and discover their unique journeys with the disease. Below you will also find helpful resources for your patients who are considering treatment with GIVLAARI.
Mike’s Journey
"I would describe porphyria as a thief. It has taken everything from me."
Mike is a father of two who was married and stood to inherit his family’s 70-year-old construction business. His long battle and eventual diagnosis with acute intermittent porphyria (AIP) changed the trajectory of his life.
History with AHP
Pre-diagnosis
- Began having mild attacks that became significantly more aggressive over time
- Attacks initially felt like heartburn and progressed into severe abdominal pain
- Cholecystectomy performed
- Tested for Crohn's disease and appendicitis
- Misdiagnosed with prostatitis and an intestinal infection
- Labeled as "drug seeking" at the pain clinic
Post-diagnosis
- Diagnosed with AIP 4 years after first attack
- Visited ER every 3-6 weeks due to attacks
- Prescription pain medications
Life with AHP Today
Treatment
- GIVLAARI – Once-monthly subcutaneous injection2
Day-to-day living with AIP
- Experienced a reduction in attacks
- Monitors/avoids common attack triggers (alcohol, smoking, certain medications, etc.)3,4
- Has occasional fatigue while traveling
"Now that I'm experiencing fewer attacks, I'm not afraid to go out." –Mike
Lina’s Journey
"The first thing I think when I hear porphyria is, debilitating."
Lina always wanted to follow in the footsteps of her parents and become a doctor. During the first year of her undergraduate program, she was diagnosed with acute intermittent porphyria (AIP) and feared she would never reach her goals.
History with AHP
Pre-diagnosis
- Experienced chronic nausea and headaches in high school
- Was prescribed medication not recommended for people with AHP
- Experienced first major attack during freshman year of college
- After multiple tests failed to produce a diagnosis, her pain was attributed to anxiety
Post-diagnosis
- Diagnosed after experiencing a seizure less than a year after her first attack
- Avoided going to the hospital until symptoms were incapacitating
- Hospitalized every 3-4 months
- OTC pain medications
- Hot water/heat therapy to manage pain
Life with AHP Today
Treatment
- GIVLAARI – Once-monthly subcutaneous injection2
Day-to-day living with AIP
- Experienced a reduction in attacks
- Continues to monitor/avoid common attack triggers (alcohol, smoking, certain medications, etc.)3,4
"I do still have a debilitating condition. But because I'm experiencing fewer attacks, I feel more like a healthy person." —Lina
Resources for your patients
Alnylam is committed to providing disease and product information to patients considering or currently taking GIVLAARI. Learn how your patients can get access to educational resources.
Connect your patients with Alnylam Assist® for personalized support
Alnylam Assist® offers a range of services to help guide your patients through treatment with GIVLAARI. These services provide a dedicated support team, which includes:
Materials to help your patients along the way
The GIVLAARI Patient Welcome Kit provides a number of helpful resources for your patients who are getting started on GIVLAARI:
GIVLAARI Patient Brochure – Provides patients with information about GIVLAARI and the Alnylam Assist® program
Alnylam Assist® Brochure – Helps patients get access to GIVLAARI with customized support
Alnylam Assist® Contact Card Magnet – A quick reference for patients to contact their dedicated Case Manager
Journal & Pen – For patients to track their treatment journey
Answer your patients' frequently asked questions
Your patients may have questions about treatment with GIVLAARI. Get answers to common questions that patients may ask when considering or taking GIVLAARI.
Do you have more questions about GIVLAARI?
Schedule an informative discussion with a GIVLAARI Representative.
Contact a RepresentativeReferences: 1. Anderson KE, Bloomer JR, Bonkovsky HL, et al. Recommendations for the diagnosis and treatment of the acute porphyrias. Ann Intern Med. 2005. 142(6):439-451. 2. GIVLAARI [prescribing information]. Cambridge, MA: Alnylam Pharmaceuticals, Inc. 3. Balwani M et al; the Porphyrias Consortium of the Rare Diseases Clinical Research Network. Acute hepatic porphyrias: recommendations for evaluation and long-term management. Hepatology. 2017;66(4):1314-1322. 4. Lin CS, Lee M, Park SB, et al. Purple pigments: the pathophysiology of acute porphyric neuropathy. Clin Neurophysiol. 2011;122(12):2336-2344.