After receiving intravenous immunoglobulin (IVIG) treatment therapy, Elli suffered from stomach cramps and diarrhea that interrupted her sleep, intense migraines that lasted days, and cramps in her legs and arms. She had just given birth to her fifth child, and the exhaustion from caring for a newborn baby and her four other children, all under the age of 9, made the side effects from IVIG intolerable.
With no sleep and constant headaches, Elli couldn’t homeschool her children, and her husband missed multiple days of work each month to care for the family. Her young children worried about their mother as they watched her get poked with needles and lose blood. They asked questions, and Elli didn’t know how to answer them.
“I had mentally hit a low. I started getting anxious when my infusions were due as I knew the next four days would be hell,” said Elli. “I started debating just stopping the medication altogether and going back to the days when I was just sick all the time.”
Elli, who has a primary immunodeficiency (PI), didn’t choose to be on IVIG. Instead, her health insurance company, Priority Health, forced her to switch from subcutaneous immunoglobulin (SCIG) treatment therapy to IVIG. As of 2023, the company requires that all patients on immunoglobulin (Ig) replacement therapy use IVIG as a first-line treatment. This policy means that all patients starting on Ig must use IVIG, and any patients already on SCIG must switch to IVIG. The change is a cost-saving measure for Priority Health.
“After being strong-armed into switching, the new medication had a huge impact on our family,” said Elli. “It was even more disappointing knowing that the only reason I was having to go through this awful time was because my insurance company wanted to save money. The meds I had been taking for years beforehand (SCIG) were keeping me healthy and giving me no side effects.”
Priority Health is a Michigan-based health insurance company owned by Corewell Health, which also operates several infusion centers in Michigan. The policy requiring patients to use IVIG, even if they prefer SCIG, is alarming to both patients and providers within the PI community. SCIG is administered at home by patients themselves using several small needles under the skin, whereas IVIG is given at infusion centers or by a nurse at home using a needle that goes directly into the vein.
The choice to infuse Ig therapy subcutaneously or intravenously is a decision that is typically made by the patient after a discussion with their doctor. In its decision to remove SCIG as a first-line treatment option, Priority Health minimizes patient needs and disregards doctors’ medical opinions. So far, Priority Health is the only health insurance company not offering coverage for SCIG, but the concern is that eliminating SCIG to save money could become a trend with other health insurance companies.
“Insurance companies may cut deals with pharmaceutical companies, saying we’ll offer patients on our insurance only your products if you give us a better rate for the product. The unfortunate thing is that they can make decisions that affect the health and well-being of patients without seeing the patient and without really accepting any responsibility for the consequences of those decisions, which I think is unfortunate,” said Dr. Lawrence Hennessey, a semi-retired immunologist, adjunct clinical professor at the University of Michigan, and past president of the Michigan Allergy and Asthma Society (MAAS).
“Even though SCIG tends to be less expensive to administer than IVIG if an insurance company owns or has an affiliation with an infusion center, it may be more cost-effective for them to pay themselves more rather than paying someone else less,” he added.
SCIG is often better tolerated than IVIG. Even though Priority Health allows patients who “fail” (have side effects) on IVIG to make an appeal and request SCIG coverage, that approach interferes with successful treatment.
“If you can document that a patient has reactions to IVIG, then they will consider SCIG, but really that should be a choice made between the physician and the patient, not by the insurance company,” said Hennessey.
“Even then, that requires a lot of extra work, time, and expense on the part of the physician to go through the authorization, to document the reactions, and it requires the patient to undergo inconvenient treatment, and the two therapies are not necessarily equivalent.”
Because patients have fewer side effects with SCIG, doctors don’t receive as many calls from patients at night or on the weekends, explained Hennessey. Most people who use SCIG remain in better control of their health than those on IVIG, and many only see the doctor every six months for follow-ups unless they have complications from their condition.
“It’s the patients on IVIG that we get calls from saying this person had an infusion reaction, or the hospital switched their preferred brand of immunoglobulin, and they had the first dose of the new brand, and they had a reaction, and I didn’t sign an order for them to get that drug. Those are the types of things we run into,” said Hennessey.
Elli appealed her case to Priority Health twice. The company denied her first request for SCIG when she was postpartum, overwhelmed with sleepless nights and healing. On her second appeal, Elli met with the Priority Health appeals board.
“I expressed the reasons why I thought my appeal was valid and should be approved. I was then asked questions by the board members that made it clear that they didn't understand PI whatsoever. I was under the impression that the board knew about my case, my diagnosis, and my medication/ treatment plan. Had I known they lacked knowledge about what they were about to decide on, I would have spoken in much more depth when expressing my situation and why I felt I should stay on my SCIG medication,” said Elli.
“I was denied the second appeal, which meant the only options I had were either switching to IVIG medications or paying out of pocket, roughly $5,000 a vial, four times per month, which isn't realistic.”
After four months of poor health due to IVIG, Elli finally succeeded in getting back on the treatment that worked best for her, thanks to a letter written by her doctor explaining that she failed IVIG. Priority Health relented and agreed to pay for the SCIG treatment.
“I was able to switch back to my prior meds, which once again allowed me to get my health stable without experiencing side effects,” said Elli. “I am so grateful to be back on my previous medication. There was no clinical reason for me to be forced to switch medications, and the ramifications we dealt with as a family were not justified.”
Doctors report that this is the first time they’ve seen a health insurance company require patients to use IVIG exclusively as a mode of administration. However, it’s not unusual for a health insurance company to remove some products, either SCIG or IVIG, from its formulary. For example, United Healthcare removed four immunoglobulin products in 2023 from its market exchange plans, deeming them not medically necessary, even though all four products lack a generic version.
Action taken to compel Priority Health to reverse its decision not to allow SCIG as a first-line treatment includes a statement issued by the Clinical Immunology Society Advocacy Committee.
“Patients with a primary immunodeficiency need an immunoglobulin replacement therapy that is tailored to their specific disease state, comorbidities, and personal preferences. The decision as to which route of administration is best for an individual patient should be decided between the patient and their immunologist. An insurance company failing to offer coverage for either SCIG or IVIG threatens our ability to provide the standard of care in these rare and complicated patients,” according to the statement.
A representative to the Michigan State Medical Society House of Delegates, Hennessey said he and colleagues are also working on a resolution recognizing these concerns in the hope that it becomes the official position of the Michigan State Medical Society that first-line treatment with SCIG or IVIG should be based on a choice between physician and patient.
Though Priority Health sent a representative to the Immune Deficiency Foundation Payer-Provider Roundtable in 2022, an effort designed to improve access to care for PI patients, the company has not expressed interest in changing its policy on not covering SCIG as a first-line treatment. Priority Health had this to say in a statement sent through email.
“At Priority Health, the safety of our members is always our top priority. We are committed to helping ensure that our members are aware of all their treatment options to help them make an informed decision about which approach provides them with the best result at a price they can afford. Any member with concerns about their treatment plan should contact the Priority Health customer service team immediately or encourage their physician to reach out to discuss their options.”
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