Sunday, August 17, 2014

Pushed to the Edge, One Family’s Health Care Woes--compounded vitamins needed for Mitochondrial Disease

Uncertainty in health care has now become personal to a family in Winston-Salem, North Carolina.
“Imagine being a parent of two chronically ill kids, having no more credit and then finding out your children’s medications will no longer be covered in a month. That gives you a sense of life in our house. We are afraid we will lose coverage next year,” says mom Pattie Curran.
Families like the Currans that have critical needs, have been feeling the brunt of higher deductibles, higher out-of-pocket expenses, higher co-pays and higher premiums.
From employers to insurance companies to drug manufacturers and hospitals, all are reacting to stress in the health care marketplace by shifting costs to consumers.
An August 2013 notice from the father’s self-insured employer says in “2014 health plan costs are expected to increase by approximately $7.4 million as a result of Health Care Reform.” The company noted that in 2013 it paid 75% of total costs to provide health care to employees and associates (who paid the rest through premiums).
Yet, according to Josh Archambault, health and welfare specialist and Senior Fellow with the Foundation for Government Accountability, “self-insured companies are subject to much less of ObamaCare than those that are fully-insured.” But a further examination of self-insured employers shows they are indeed affected by ObamaCare mandates in many ways that would cause their costs to increase. (See footnote [i])
Numbers and timelines don’t lie
Managing two teenage sons born with Shwachman-Diamond Syndrome and secondary mitochondrial disease has been a herculean task for their parents both physically and financially. Yet, they were able to make it until now.
In an email interview with Pattie Curran, Watchdog Wire learned the first clue the family’s insurance costs and coverage were changing for the worse was “when a medication protecting [her] son’s kidneys from damage started going up.”
For 5-6 years before Obamacare, it was $131 for a three-month supply. The year after the law passed, it went up to $283, the following year, $343, then $495, and last year, for the first time, it went up in the middle of the year to $532… All the while we were working for an exception. We had to pay $532 a few times before we got it [the exception] and are now desperately trying again; otherwise it will cost us $708.
Under their health insurance plan before 2010 [ObamaCare was signed into law then, but most of its mandates took effect in January 2014], the Curran family had out-of-pocket expenses in the range of $12,000 to $15,000 per year. In 2013, the total OOP was $$22,700.
Moreover, from 2010 to 2014, their annual premiums will have increased by $3,066.
First price hikes, then denial of drug coverage
Now, after years of price increases, the family has received letters from Express Scripts, their pharmacy benefits manager (PBM), telling them many compounded medications will no longer be covered. Pattie said this includes “19 of the compounded meds they use for mitochondrial disease. There is no cure for mito… It will cost us thousands and thousands of dollars a month we don’t have to get them OTC.”

Express Script facsimile
The family’s doctor, Dimitry Niyazov, MD of the Oschner Clinic in New Orleans, in a letter to the pharmacy manager wrote, “As his primary Mitochondrial Disease specialist, it is my opinion that without this compound [Curran’s son’s] muscle and organ functioning would decline significantly resulting in the life-threatening progression of his disease …If insurance coverage for the compounded vitamins is denied, [son] may develop neurodegenerative symptoms which can result in death as seen in mitochondrial disease.”
Watchdog Wire checked with Jennifer Luddy, Senior Manager in Corporate Communications at Express Scripts, and asked about compounded drugs and why the company wouldn’t negotiate price caps with drug manufacturers in order to keep the costs down, so people like the Currans could continue to have coverage.
In a written statement, Luddy said that the prices of compounded drugs have risen steeply because of “certain compounding pharmacies who have needlessly driven up the cost of care the past few years.” In addition, she said, “If a patient truly needs a compounded medication covered by their plan, we will make sure they get it. Our program only blocks just over 1,000 ingredients – mostly for untested topical creams and ointments used to treat pain and other conditions – with greatly inflated prices that provide no additional clinical benefit.”
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