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Some issues hit close to home. For me this one hit very close. On July 7, a letter issued from my daughter’s health insurer, six pages, single spaced, denied coverage for her medication that prevents her from going blind. It demanded expedited response to prevent adverse action from being taken. The letter was received approximately a week after its stated date and was received by regular mail. In case the message had not been clear, I suppose, a second letter also denying coverage was received a few days later.
Despite their length or maybe because of it, the date and method of the required response to prevent adverse action was unclear. Remember, I am speaking as an attorney who is accustomed to reading this kind of thing, although for many of my clients the claims are for nursing home Medicaid or sometimes for disabled children. The appropriate actions to be taken after receipt of these letters are virtually incomprehensible.
For instance, according to the notices you could have either an internal appeal or an external review. You could have a standard pre-service internal appeal, a post-service internal appeal or urgent/expedited internal appeal(s). For urgent/expedited internal appeals you must make your request within “5 (five) business days from receipt of this notice to file an expedited appeal” in which case “you have one (1) level of internal expedited appeal which is completed within 72 hours of the appeal request…” Otherwise you could have a “standard external review” by calling the plan within four (4) months of receipt or if you have an “expedited external review” request, this drops to only “72 hours from receipt of determination letter to submit…” It goes on. These were not the only problems with the letters, but you get the gist.
Fortunately, Alisa’s West Chester rheumatologist, Dr. Jaworski, and his staff member in charge of such matters, Liz Morris, are very proactive and moved quickly and after some very anxious days and communications and filings, ultimately, she was approved. My small family lives not only in an area of Pennsylvania that is noted for its relative wealth but also for its excellent medical providers and systems, being only a few blocks from Chester County Hospital, part of Penn Medicine, and near Paoli/Main Line Health. I could only shudder at the circumstances facing someone receiving such notices in rural America and trying to respond on their own. But here is what was at stake.
Alisa has been taking a biologic “pen” type injection, Humira, for the past seven years for an aggressive autoimmune condition, tubulointerstitial nephritis with uveitis, that attacks her eyes. The danger is not theoretical. We would not soon forget the initial race to the emergency room years ago at E.I. DuPont Hospital as she was losing her sight. Dr. Jin, her ophthalmologist, and later Dr. Leffler, her rheumatologist literally restored her vision. We watched it coming back. Dr. Jin, walked the hospital hallways with us on the weekend as Alisa was an inpatient for almost a week.
Over the years Alisa had different medications, none of which worked consistently and several with side effects including an eventual extreme adverse reaction to Remicade hospital infusions. When Humira was prescribed it was the only medication that worked consistently, predictably and without adverse reactions. On a rare occasion when it was not taken on schedule the inflammation predictably returned and required emergency steroid treatment. So, a denial of coverage was/would be serious, and the results would be predictable. At the same time the denial was received we received a bill for four weekly injectable Humira pens. It was $16,024.58. With fifty-two pens needed for a year’s supply, it’s easy to work the math.
The stated reasons for the denials include “experimental/investigational” (although recognized for biweekly) and either not approved by the Food and Drug Administration or not supported in the “medical compendia” (described as “a collection of medical references recognized by health care professionals”) or “published literature.” Another statement “not prescribed or in consultation with an ophthalmologist” was just not true. This statement about prescription by an ophthalmologist was made by a physician who, according to an internet search, is a Doctor of Emergency Medicine in Utah. The remaining letter’s decision appears to have been provided by a Doctor of Internal Medicine in Arkansas.
Lesson: It is too difficult for average people to navigate the medical prescription drug system. We have to do better.
Janet Colliton, Esq. is a Certified Elder Law Attorney at Colliton Elder Law Associates, PC, in West Chester, Pennsylvania, and an ElderLawAnswers member. She is a member of the National Academy of Elder Law Attorneys and, with Jeffrey Jones, CSA, co-founder of Life Transition Services LLC, a service for families with long-term care needs.