There are resources available to you as a patient that will help you with your diagnosis.
Patient Toolkit
Being diagnosed with a rare disease can be stressful, daunting and confusing. Where do you start to begin not only to understand this disease, but how to take care of yourself. No doubt there are so many questions swirling in your head - and you just don't know where to start. So many Acromegalics find that they have maybe become reclusive or depressed, which makes it even harder to ask for help,or reach out for support.
Because of this, the Acromegaly Community is finding ways to help our newly diagnosed #AcroFamily. The toolkit continues to grow each day, but below you can find some downloadable files that could help with questions for your medical team, a packing list for your hotel stay, etc. We hope you find this helpful! If you find that you still have questions, or that you have suggestions for things to include in our Patient Toolkit, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.
- Hospital (Hotel Acro) Packing ListHotel Packing List
Not sure what to pack when you go to the hospital for your transphenoidal surgery? Print this list to help you pack. - Medical Notebook
Build this binder to help you keep track of your medications, contact information, updates etc.
Patient Assistance Programs
Medications used to treat Acromegaly can be very costly, thus unaffordable for so many patients. Both Laneotride and Octreotide can cost $5,000 per shot, without health insurance. With health insurance, the cost comes down to around $3,000 per shot. To help with these exorbitant costs, the pharmaceutical companies offer patient assitance. Please click on the links below to learn more and apply for assistance.
MYCAPSSA Patient Support Program
Dedicated Patient Care Specialists from the Chiasma Access & Patient Support (CAPS) program will help you and your doctor throughout your treatment journey. You can call the CAPS Patient Care team today at 1-833-3GO-CAPS (1-833-346-2277) or email us at This email address is being protected from spambots. You need JavaScript enabled to view it. to learn how we can help you get started on MYCAPSSA.
SOMAVERT Support Programs
Pfizer offers Acromegaly patients financial, emotional and medical support through several available programs. Read more about each program by clicking the program name below, or call 1-800-645-1280 to speak to a representative.
How the Pfizer Bridge Program works
- Get any additional information that is needed
- Answer your insurance or reimbursement questions
- A copy of your insurance card, which you can get from your employer or insurance company
- The policy holder's name, address, and date of birth
Your PCC will look for other ways to help get coverage, if your insurance benefits do not cover therapy with SOMAVERT. Your PCC may also help you appeal the decision. This means he or she asks your insurance company to extend your coverage to include SOMAVERT treatment.
Calls about insurance reimbursement are welcome during the hours of 9 AM to 7 PM Eastern Time at 1-800-645-1280.
*Certain programs and services powered by Pfizer RxPathways®.
Financial support is available for eligible SOMAVERT patients
*Eligibility required. Annual savings up to $20,000. State and Federal Beneficiaries not eligible. Terms and conditions apply.
Patient treatment support from the beginning.
Starting a new medicine can mean lots of questions—and, sometimes, hurdles to getting your treatment. That’s why Pfizer created the Pfizer Bridge Program®*. When you enroll in the Pfizer Bridge Program, you are assigned a Patient Care Consultant (PCC).Somatuline® Depot Copay/Coinsurance Support Program
Once the doctor has prescribed Somatuline® Depot (lanreotide) injection, the Patient Access Specialists at IPSEN CARES® can provide applicable patient coverage information, as appropriate, between the patient, doctor's office, insurance company, and specialty pharmacy. By serving as a central point of contact, IPSEN CARES® can help patients get started on treatment and provide support throughout the process.
Patients and Health Care Providers can also call IPSEN CARES® at (866) 435-5677
Learn more about this program
Sandostatin Support Program
Novartis Oncology is committed to helping you get the medicines you need. Getting access to medications can sometimes be difficult or confusing. Patient Assistance Now Oncology (PANO) offers tools and support designed specifically to help make that process easier.
Support for patients includes:
- Help you understand your insurance coverage and financial responsibilities through the insurance verification process
- Help you identify/determine pharmacies covered by your plan Provide insurance and Medicare education
- Provide information about financial assistance that may be available
- Patient Support Counselors who are able to provide information in over 160 languages
- One single point of contact to help guide you through getting access to the medicine prescribed by your doctor
To learn more, call 1-800-282-7630.
Support designed for patients and caregivers - Insurance and Medicare education to help you understand the insurance process Financial assistance for eligible patients*
- Patient Navigators who provided 1-on-1 support specific to your Novartis medicine(s)*
- Information about independent organizations that can assist you with your day-to-day needs beyond medical care
- Patient Support Counselors who are able to provide information in over 160 languages
*Varies by product
- Eligible patients with private insurance may pay $25 per month
- Novartis will pay the remaining co-pay, up to $15,000 per calendar year, per product*
* Limitations apply. This offer is only available to patients with private insurance. The program is not available for patients who are enrolled in Medicare, Medicaid, or any other federal or state health care program. Novartis reserves the right to rescind, revoke, or amend this program without notice. For full Terms and Conditions, visit www.Copay.NovartisOncology.com or call 1-877-577-7756.
Encourage your patients to find out if they are eligible to enroll in the Universal Co-pay Program by visiting www.Copay.NovartisOncology.com or calling 1-877-577-7756.
For direct patient questions call: 1-877-577-7756.
Discrimination at Work
Do you think that your employer is discriminating against you? There are laws in place for people suffering from medical discrimination.
If you live in the United States and are struggling to handle your medical struggles and your employment circumstances, you have options.
Personal Pain Management
- Pain is a negative sensation caused by noxious stimuli that is registered by the brain which was relayed from receptors externally or internally from the body.
- Pain is tolerated differently by every person, but it’s method of travel is consistent for every person.
- The painful stimulus disturbs the nerve endings sending the pain signal to an afferent nerve. The afferent nerve relays the signal to spinal cord which in turn, sends the message to the brain.
- The painful stimulus disturbs the nerve endings sending the pain signal to an afferent nerve. The afferent nerve relays the signal to spinal cord which in turn, sends the message to the brain.
Articles & Good Reads
Pituitary World News Technology Corner
Additional Good Reads:
- Far Reaching Effects of Pituitary Disorders
- Automatic Detection of Acromegaly From Facial Photographs Using Machine Learning Methods
- Researchers Find Slightly Elevated Cancer Incidence in Patients with Acromegaly
- Chiasma Completes Enrollment of MPOWERED(TM) Phase 3 Clinical Trial of Octreotide Capsules in Patients with Acromegaly
- Meet the 2018 Laureates: Shlomo Melmed, MD
- Similar A1c Effect for Intermittent vs Continually Restricted Diets
- Differential Diagnoses Should Be Considered in Patients with Features of Acromegaly without Excess GH Secretion
- The Patient Had Pain When He Walked, but There Was a More Telling Change
- Serum IGF-1 in treated acromegaly - how normal is "normal"?
- Acromegaly Complications
- Acromegaly: Know the Symptoms, Advocate for Necessary Screening
- Acromegaly Overview
- Early Manifestations, Sex Differences May Aid in Acromegaly Diagnosis
- From pituitary adenoma to pituitary neuroendocrine tumor (PitNET): an International Pituitary Pathology Club proposal
Acromegaly does not define us. We do not let our diagnosis hold us back from living a full and enriched life. Some have found passion, purpose, and inspiration through their diagnosis. These people bring inspiration, and we call this our "Faces of Hope".
Say hello.
Thank you to our platinum sponsors who made our 2019 International Acromegaly Community Conference in New Orleans a reality.
