Get to know Laurel Cherwin, a patient with Primary Immunodeficiency (PI), advocate, and Clinical Nurse Educator at Octapharma. Join her as she delves into her insights on the tradeoffs in infusion modes of administration, personal preferences, and important considerations when contemplating a change in treatment.
Providing some context, my journey with Primary Immunodeficiency (PI) started with a diagnosis at the age of 49. Battling recurrent ear, sinus, respiratory, skin, and urinary tract infections, coupled with systemic inflammation, I also faced the challenge of recurring inflammatory breast disease. Enduring three surgeries and two hospitalizations within a year, I underwent a mastectomy, leading to the necessity of halting work due to the toll on my taxed body.
The revelation of my infections and fatigue occurred during my role as a clinical director of operations for a home care company in South Florida. Subcontracting intravenous immunoglobulin (IVIg) nurses for specialty pharmacies, I noticed a shared history among many patients resembling my own. This prompted me to consult a prominent clinical immunologist, initiating a three-month diagnostic process that eventually confirmed the primary immunodeficiency: common variable immune deficiency (CVID). While the confirmation was a shock, it brought relief as it validated the root cause behind the myriad issues my body was grappling with. This marked the initiation of my journey into PI treatment.
IVIg Therapy in a Clinic Setting
Initially, my prescribed treatment involved intravenous immunoglobulin (IVIg) infusions administered at home, but my insurance did not authorize this, redirecting me to a hospital for treatment. This presented various challenges. The chosen hospital, due to my physician’s privileges, was a 45-minute drive away, exacerbated by the need to navigate rush-hour traffic for a 7 am appointment. The process involved checking into the hospital, followed by another check-in at the infusion center, subsequent product ordering, and a half-hour wait before the actual infusion commenced, lasting 7-8 hours. Finally checking out at 5 pm, I faced another rush-hour drive home, making it a daunting day-long ordeal that I endured for eight months. A transition to home treatment was permitted due to an upcoming neck surgery.
Understanding how infusion centers typically operate is crucial when deciding on therapeutic options. These centers often dictate policies, schedules, and even physical layouts. Most are compact spaces, sometimes shared with multiple patients, creating a noisy and challenging environment. Many infusion centers, initially designed for oncology patients, may lack experience with IVIg infusions. This is significant because reactions to IVIg can be rate-dependent, and staff unfamiliar with IVIg may infuse too quickly. The focus on turnover to accommodate more patients can compromise the infusion experience. In my case, the infusions were lengthy, and the staff, unprepared for my specific sensitivities, struggled with managing reactions, making the entire process less than ideal.
IVIg Therapy at Home
Home infusion, though convenient, posed its own set of challenges for me. Allowing a stranger into your home, especially amid a pandemic, raises concerns about safety. Questions about the person’s adherence to safety measures, such as wearing a mask, become paramount. Beyond COVID-19 considerations, evaluating the nurse’s respect for your needs, time, and home is essential. While forming a positive relationship with your nurse is possible, the reality is that you may encounter different nurses each time, leading to inconsistency in practice.
In my personal experience, numerous nurses lacked adequate training for IgG infusion. A concerning incident involved a nurse increasing the infusion rate while I slept, resulting in a near-anaphylactic reaction. On two separate occasions, I developed aseptic meningitis following infusions, prompting me to terminate the nurse’s services. The underlying issue was the constant need to monitor the nurses during every infusion, creating a situation where patients shouldn’t feel compelled to do so. Patients deserve assurance in standardized practices and the quality of care provided.
Evaluating IVIg Options
Engaging in an open dialogue with healthcare providers is crucial for patients to explore available options and voice their preferences, whether for home or infusion center administration. Understanding the criteria determining treatment success, including metrics for dose and frequency evaluation, is essential. Patients should actively participate in decision-making, considering both physical and lifestyle aspects to enhance compliance and achieve optimal outcomes.
In my journey with various IVIg products, decisions to change were influenced by factors such as my body’s response to formulations, administration requirements, insurance coverage, and the occurrence of avoidable adverse reactions due to nurse errors. Recognizing our uniqueness, it is imperative to find a tolerable formulation with a doctor who supports exploration, willing to seek authorizations or make necessary adjustments.
Convenience is a right, especially for those leading active lives. Patients should question whether their treatment aligns with their schedule and needs or is driven by convenience for healthcare providers. Assertiveness is key; it is the patient’s life, health, and time that are directly affected, emphasizing the need to advocate for a treatment plan that prioritizes individual well-being.
SCIg: Therapy on My Terms
Let me be straightforward – SCIg stands out as my preferred therapeutic choice.
Opting for subcutaneous therapy provides genuine empowerment and control. You take the reins, making the entire infusion process less cumbersome. With SCIg, you decide where and when to infuse, eliminating dependence on others. Whether infusing after work, adjusting for an event, or planning a trip, the flexibility of SCIg allows for a semblance of a normal life. It puts you in command.
Certainly, collaborating closely with your doctor remains essential to identifying the right product formulation and making any necessary adjustments. Yet, in my perspective, handling the entire process with SCIg proves significantly more manageable.
Acknowledging change’s difficulty is essential, recognizing the considerable time and energy it demands. The age-old saying, “the devil you know may be better than the one you don’t,” captures the reluctance to embrace change. Individuals with primary immunodeficiency (PI) or any chronic condition may often feel powerless. I’m here to affirm your right to actively manage your care, comprehend and explore options, advocate for suitable medications, set your schedules, request new healthcare providers, insist on consistency and quality in care, and communicate your needs to your insurance provider.
Here are some recommendations:
Understand Your Insurance Process: Navigate the complexities of your insurance procedures. Learn how treatments are authorized, familiarize yourself with the appeal process, and grasp your financial responsibilities.
- Document Your Interactions: When contacting your insurer, take thorough notes. Collect the name of the representative and a call ID number for documentation purposes.
- Explore Financial Assistance: Investigate available co-pay or financial assistance programs that may alleviate the financial burden.
- Plan for Authorization and Receipt: Grasp the timeline and steps involved from authorization to receiving your prescription. Setting expectations aids in planning.
- Advocate for Yourself: Be ready to assert your needs, preferences, and desires. No one understands them better than you do.