Ig Replacement Therapy: Through the Eyes of a Parent and Patient Advocate
Guest Blog: Laurry Hinds, R.N., Regional Director for Business Development at BioPlus Specialty Pharmacy
It was a cold day back in January of 2008 as I made my way to an appointment with my high-risk obstetrician for a scheduled Caesarian section. The gender of my baby would be a surprise I’d find out shortly, but what I did know was that, with me as rH negative, this child would have complications related to elevated bilirubin levels and anemia after birth.
It wasn’t long until I met my son that day, but the joy of that moment was soon replaced with concern as my son’s journey began – or should I say the fight of his life. It was a challenging two weeks at the hospital as he and I relied on the expertise of the physicians and nurses caring for him to get him through this rough time. After several conversations and interactions with various nurses and physicians specializing in everything from Neonatology to Hematology and Oncology, he was discharged home two weeks after he was born.
Ig Replacement Therapy
Ig Replacement Therapy played a key role in my son’s treatment and recovery during those harrowing weeks after his birth. At the time, this medication was more commonly referred to as IVIG, which is short for intravenous immunoglobulin.
My son received several doses of Ig Replacement Therapy during his hospital stay, along with several other therapies. Of these various therapies, the most complex therapy for a patient his age and size was definitely the infusions of Ig Replacement Therapy.
With the addition of subcutaneous versions of immunoglobulin, such as Vivaglobin© (no longer available in the USA), Hizentra©, Gammagard©, and Gamunex© just to name a few, many clinicians have moved away from the term IVIG since the IV in IVIG is indicative of the route of administration. Ig (immunoglobulin) Replacement Therapy – as it is now more commonly known – represents both the IV and the subcutaneous (SQ) routes.
As a mother who also happens to be a registered nurse, I felt compelled to always question the information that was given to me by my son’s medical team. Although my clinical expertise helped me during this trying time, looking back I realize that I clinically suppressed quite a bit during those dark hours while I wondered: “will my child make it home alive?”
Fast Forward to Today
Here we are, nearly five years later and I am thrilled to share that my son is healthy. In fact, I am now the mother of three rH negative children, all of whom received successful and complication-free infusions of Ig Replacement Therapy. I strongly believe that the clinical expertise of the registered nurses and pharmacists on my children’s care teams contributed to our successful treatments and avoidance of complications.
My path from parent to patient advocate has brought me to where I am today: the Regional Director of Business Development and a patient advocate for BioPlus Specialty Pharmacy. I feel particularly well-suited in making sure that every patient and their family understands the risks and the benefits of Ig Replacement Therapy. As a clinician, I can provide clinical tools to overcome side effects and as a mother to Ig Replacement Therapy recipients, I can speak to patients from the heart.
In my work I answer questions and join in on office visits not only with families of newborns, but also with patients diagnosed with a primary immune deficiency, neuromuscular diseases, dermatology diseases such as pemphigus, and women struggling to carry a pregnancy to a viable age.
With all the medical terminology that gets thrown around at medical appointments with these complex issues, it’s not surprising that many patients and their families feel very anxious – whether they have a medical background like I did or not. I’m there every step of the way to help these patients gain clarity through this complexity by answering questions and supplying educational information, as well as walking patients and family members through the process before, after, and during their infusions.