The Diagnosis Journey
Megan recently graduated, married, and started a rewarding career when she was diagnosed with a primary immunodeficiency disease called Common Variable Immune Deficiency. While her new diagnosis posed challenges and struck at an already hectic time, Megan felt fortunate she was diagnosed relatively quickly and that there was treatment available. At the time of her diagnosis, the Internet had not yet evolved into the rich, spiraling, and often overwhelming web of information and opinions, especially regarding health advice, that it is today. This was a relief because it did not allow her to “go wildly searching to figure out life expectancy or anything like that,” a nowadays all too common digital journey that many patients know all too well. Ask nearly anyone, and you’ll find they likely have a story about their encounter with WebMD or other similar sites and their anxiety-provoking tendencies as they beam out many possible diagnoses. High tech medical knowledge came in the form of a printed pamphlet she received from her doctor.
The Road to Resiliency
My doctor specifically advised me to focus on the positive with an effective treatment option available. I heeded his advice! I’ve had some ups and downs over the past two decades even as I strive to live a very healthy lifestyle through diet, exercise, good mental health practices, and being very compliant with my treatment plan. I’ve learned to say no at times to manage my energy levels and accept help when offered by others. I’ve learned I can bounce back.
Forced to face immense challenges – mainly on her own, she’s grown incredibly resilient. Enjoying times of triumph, Megan persevered through low points due to the unpredictable nature of life and chronic illness. One of the most impactful turning points in Megan’s journey came in 2008 when she discovered the national patient advocacy organization for primary immunodeficiency disease, the Immune Deficiency Foundation. Since then, she’s gotten deeply involved and has been able to attend and advocate at many of their biannual national conferences and local events. Empowered by her newfound coalition and community, she has transformed from patient into advocate.
When I first began Ig treatment, I would have to take time off work and go to a hospital’s infusion center to spend much of the day with an IV in my arm. Today, I receive my infusions through a portable infusion pump about the size of my hand. It lets me infuse Ig on the go. I infuse every week without fail. The entire process takes about 2.5 hours. My pump has seen more than 20 countries and four continents so far! The ability to do infusions wherever I am enables me to travel the country and help educate patients and health care providers about primary immunodeficiency diseases. Thanks to the advancement of medicine, the support of my community, and my advocacy work, two decades later, I’m full of hope for the future thanks to my health care team and the legion of plasma donors.
Advocating for Change
However, the chronic disease journey is never seamless for any patient. Megan’s advocacy skills were tested first-hand when she recently faced shocking bills upwards of $6,000. Previously Megan paid close to nothing out of pocket thanks to copay assistance programs. Copay assistance programs are funded by a third party and are paid directly to insurance companies to alleviate the high cost of specialty medications for patients.I’ve spent two days working to uncover why I was receiving unexpected medical bills I learned I have a “specialty copay offset benefit” on my pharmacy plan that ensures I get NO ‘benefit’ from copay assistance programs!
In these hours on the phone she worked to understand why none of the immunoglobulin product charges were being applied to her deductible or co-insurance. Financial summaries on the pharmacy website read like a foreign language and showed that charges for the product were almost zero-ed out like that did not even exist, but she could see payments made by the copay assistance programs. Pharmacy Benefit Managers work to negotiate these savings that they pocket directly – to the harm of the patient. So while the insurance company is paid by the third party, the patient is charged as well. This is an insurance practice known as “copay accumulator programs” and patients find themselves slapped with a surprise bill when they uncover none of these payments have been applied to their deductibles or out of pocket costs.
Until now the disease has not been a financial burden to my family. This experience has also taken an emotional toll on me in an unexpected way.
About
Megan is an avid leader and advocate with the Immune Deficiency Foundation and valued member of the Infusion Access Foundation Stakeholder Council. Share your story and connect with Infusion Access Foundation today. Together, we shape the future of healthcare access for all patients.
Infusion Access Foundation is a lead in several coalitions fighting to end PBM practices and Copay Accumulator Policies that directly harm patients. For more information on these topics and to take action, head to our CoPayand PBM Advocacy pages or watch our educational videos below.
