3 Ways to Advocate for Yourself During the IVIG Shortage

Dawn DeBois
patient holding onto infusion pole

Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel your appointment.” This shortage has understandably caused panic among patients who depend on IVIG to walk, talk, breathe and live.

Christina Caron, a friend with chronic inflammatory demyelinating polyneuropathy (CIDP) living in Maine, has been on IVIG treatment for 19 years. She, like thousands of other IVIG patients, has taken to social media to ask for plasma donations to help alleviate the shortage. She said that for her, “IVIG treatments literally mean the difference between being able to function and paralysis.”

I am one of many patients who has received a call to tell me that my IVIG treatment has been delayed due to the national shortage. For over a year, my IVIG treatments have been an integral part of my trifecta of medications that have managed my Lambert-Eaton myasthenic syndrome (LEMS) symptoms. I recently shared the benefits that I’ve experienced on IVIG in a blog titled, “Thanks to IVIG, I can fully enjoy life again.”

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Every patient who is experiencing delays or has been denied treatment is asking themselves, “How quickly will my symptoms escalate?”

CIDP and LEMS patients are not the only ones treated with IVIG. The miracle therapy referred to as “liquid gold” is indicated as a successful treatment in the areas of neurology, hematology, immunology and rheumatology, and for diseases such as primary antibody deficiency, myasthenia gravis and lupus. IVIG gives some of us periods in which we are almost symptom-free, as if we were before our lives were turned upside down by our illnesses. IVIG keeps many people alive and has saved many lives.

I contacted a spokeswoman from Takeda Pharmaceuticals, one of the companies that manufacturers IVIG products, to gain an understanding of the reasons for the IVIG shortage. She explained: “Over the past 15 years we have seen demand for immunoglobulins (Ig) steadily increase, and more recently demand for Takeda’s Ig portfolio, including GAMMAGARD LIQUID [Immune Globulin Infusion (Human)] 10% Solution, outgrew the market.” As a result of the manufacturing time required to produce GAMMAGARD LIQUID combined with growing demand, we are experiencing interruptions of GAMMAGARD LIQUID that will likely persist throughout 2019.”

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She added, “We recognize the seriousness of this situation and are working diligently toward addressing this interruption of GAMMAGARD LIQUID.” The American Society of Health-System Pharmacists has an inclusive list of the current immunoglobulin shortages that affect multiple brands and are due to increased demand.

As someone with an autoimmune disease, the demand for IVIG is unsurprising to me because the treatment works so well at stopping attacks by rogue antibodies, allowing patients to enjoy life without the fear of being around sick people. IVIG enables me to live fully and happily despite having LEMS. Friends who hadn’t seen me since starting IVIG can’t believe how well I’m doing. Many have said they haven’t ever seen me look or sound as well as I do now. IVIG is genuinely life-changing for me and thousands of others.

So, if you’re facing an IVIG shortage, here’s my my patient-to-patient recommendation:

  1. Stay in continual communication with your prescribing provider.
  2. Let them know when your symptoms start to escalate.
  3. You might need to discuss other treatment options with their providers, which may include plasmapheresis or immunosuppressant medications.

Related:When You Start Experiencing Symptoms Again After a Period of Remission

Remember, processing of blood products takes time, so this shortage will not be solved overnight.

I know I am one of the fortunate ones. Luckily, I recently received a call from my infusion center to confirm my rescheduled IVIG infusions the following week. I am relieved because my LEMS symptoms are flaring: My legs are heavy, my vision is worsening, and getting up from my trusty recliner takes both hands. I need to hold on to the wall to ascend the one stair in my house, and my exhaustion has returned to my pre-diagnosis levels. However, though I am receiving treatment soon, the shortage means other scheduled treatments are not guaranteed. I am looking at all available options to manage my illness during this uncertain time.

If there is a rainbow after the storm of this nationwide IVIG shortage, it will be that not a single droplet of blood product will be received without gratitude for the miracle of the entire IVIG process, from donor to patient.

Are you facing access issues with your IVIG treatment? Let us know in the comments below.

Read more stories like this on The Mighty:

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The Importance of Enjoying Life When Your Illness Isn't Flaring