Support to help you manage the condition
Finding out you have Primary Periodic Paralysis (PPP) may cause concerns and questions about what this diagnosis means for you, both today and into your future. That’s why we’ve developed a variety of tools and resources to help you learn more about your condition and get the most out of the treatment plan your doctor recommends.
Your health insurance company may require a prior authorization to be approved by your doctor before they will cover the cost of your insurance. The doctor who ordered your KEVEYIS may need to submit the required paperwork and supporting documentation and request approval. Below are some tips for you to help minimize the risk of insurance denial.
- It is always important to maintain an ongoing medication log that includes all medication treatments you have tried in the past and current medication treatments for your PPP.
- Maintain a list of all physicians and hospitals that you have visited regarding your PPP, including any emergency room visits where lab tests may have been taken during a PPP episode.
- Create a file folder to keep all of your documents, logs, test results, and medication lists. Keeping these in chronological order will help your doctor.
If your health insurance is not covering your prescription of KEVEYIS, here are some things you can do to help advocate for your coverage. Remember, you are your own best advocate.
✔ Write a letter to your state’s department of insurance
Every state has different ways of assisting consumers with insurance denials.
If your insurance company has denied your claim for treatment, you can customize this letter created by the National Organization for Rare Disorders (NORD) for your type of PPP and treatment and send it to your state insurance commission.
A few tips for writing the letter:
- Include all of the paperwork regarding your case.
- Provide as much detail as possible about your history with PPP and previous medications you took as well as how you did on them.
- Request information from your doctor’s office to support your case, including internal and external appeal documents submitted by the doctor.
✔ Reach out to your employer
If you have insurance through an employer or union, call your employer’s human resources (HR) department and ask to speak to the health benefits manager or health benefits administrator. He or she could help you or refer you to someone who can provide more guidance. You may ask if your employer could send a letter or place a call to the insurance company, explaining why your claim is valid and should be covered. That could convince the insurance company to reverse its decision and pay the claim.
✔ Check out resources available and work together
Although it can be time-consuming to deal with insurance denials, there are resources and support that can help. Some other helpful resources include NORD’s state-insurance map, which provides state-specific resources related to health insurance, as well as resources offered by the Patient Advocate Foundation and the Kaiser Family Foundation. In addition, detailed information on types of denials and review processes can be found at HealthCare.gov.
Speak with your doctor and their staff about supporting your request for coverage from your insurance company. In addition, a Patient Access Manager (PAM) can share information and answer questions about your insurance coverage and financial assistance. Sign-up to talk with a PAM about your questions.
The family facilitator brochure will help you get ready to talk with your family about PPP, and why it’s important to be evaluated for PPP by a doctor so they can manage the condition. The family history worksheet will help you map out the pattern of PPP in your family.
Recording the details of your attacks can help you and your doctor understand your disease. The downloadable Daily Tracker Tool gives you an easy-to-use form to note when the attack occurred, how long and how severe it was, if there were any triggers, and more.
For a more complete look at how you live with your PPP, the 1-Month Diary is a helpful tool that lets you compile and summarize the details of your attacks, understand which treatments and lifestyle changes have worked, and how the attacks and PPP have impacted your life.
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Prepare for your next visit to the doctor with this informative Doctor Discussion Guide that helps you consider the current and future treatment for your PPP.
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There may be times that you find it hard to tell if what you’re feeling are possible side effects or symptoms of PPP. These brochures can help you better understand treatment-related side effects, as well as strategies for managing them. As always, your healthcare team is your best source of advice. These brochures can help you in starting those conversations.
Strongbridge Biopharma sponsored a group of experts in treating and researching PPP to identify and address unmet needs in patients’ diagnostic journeys. These experts then developed a series of white papers to help physicians and patients better understand these challenges with PPP.
Primary Periodic Paralysis:
Learn more about Uncovering Periodic Paralysis, a no-cost genetic testing program for patients and their family members who have symptoms of hyperkalemic or hypokalemic periodic paralysis.
Download NowPPP DocFinder Website
In support of the PPP community, Strongbridge Biopharma has created the PPP DocFinder. This website will help you find doctors who have experience diagnosing and managing PPP.
Community support
Periodic Paralysis Association
The Periodic Paralysis Association is a nonprofit charitable corporation founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder, and champion the interests of the periodic paralysis community.
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Periodic Paralysis International
A mission-driven, independent and not-for-profit whose goal is to help create successful partnerships between physicians, researchers, and periodic paralysis patients in order to speed diagnosis and improve therapy and management strategies, thereby improving quality of life and clinical outcomes for patients.
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An Online PPP Community
The Inspire online community connects patients and caregivers living with PPP. Members share stories of support on how they are living and thriving with PPP as well as valuable information.
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Muscular Dystrophy Association (MDA)
A nonprofit organization whose mission is to provide hope and answers to families living with diseases that take away muscle strength and mobility.
Learn more