Unaffordable Health Care

Here is a little quiz: How much money did the Elwy family pay in out-of-pocket health care costs in 2011? a) $5,000; b) $21,000 or c) nothing.

I’m not telling….yet!

The media is viral with coverage of the many case filings at the Supreme Court of the United States regarding the Affordable Care Act (ACA). As the mother of a medically complicated son, and a professor of health policy and management, I just can’t stay out of this conversation.

Ben recovering from double knee surgery, November 2011

Ben recovering from double knee surgery, November 2011

According to Dr. Sherry Glied, Assistant Secretary of Planning and Evaluation at DHHS, and the person who is in charge of implementing this two-year-old law, the ACA has five major reform areas: 1) reform of insurer practices; 2) improvements in insurance coverage; 3) expansion of coverage; 4) prevention and public health fund and 5) delivery system reform. I cover this last part in my PM755, The Shape of Health Care Delivery class at BU School of Public Health–so if you want to know more about accountable care organizations, bundled payments and the Centers for Medicare and Medicaid Innovation Center–you can email me offline. But it’s the other aspects of the law that are so important here.

While much of the ACA won’t go into effect until 2014 (such as the end to discrimination based on pre-existing conditions), many parts of ACA are already law. In reforming insurer practices, the U.S. government has already repealed lifetime limits on health insurance coverage for 105 million Americans. For a child like Ben–whose procedures, surgeries and therapy visits take us to the catastrophic limit of our health insurance coverage every year–repeal of lifetime limits in insurance coverage is the difference between life or death. In improving insurance coverage, the ACA now provides 54 million more Americans with full access to preventive services recommended by the U.S. Preventive Services Task Force without a copay, including 5.5 million receiving Medicare. Young adults–2.5 million of them–now receive health insurance coverage through their parents’ plans, under the ACA expansion. Maybe you are one of these people who have already benefited from the ACA? If so, I’d love to hear your story.

I am the subscriber of our family’s Blue Cross Blue Shield health insurance plan. We have a lot of freedom, and coverage, in this plan. When we need to take Ben to Johns Hopkins to visit genetics specialists who are some of the few people in the world with any expertise in Schwartz-Jampel syndrome, we do not have to ask BCBS for permission. Ben receives 75 physical or occupational therapy visits a year–generous by any account–but these are usually used up by late Spring, at which point BCBS provides an Individualized Case Management program which assesses Ben on a month-to-month basis and provides him with coverage for additional chest physical therapy visits. Without these thrice-weekly appointments, Ben would be–and has been–hospitalized with pneumonia. All of Ben’s six daily meds are covered. In addition to the BCBS coverage, Ben qualifies for Massachusetts’ Medicaid plan under the home care waiver program called Kaleigh Mulligan, which provides him with additional insurance to cover the costs that BCBS doesn’t, such as some copays and much of his nursing care.

But Ben’s coverage hasn’t always been this complete. Last year Ben was deemed “too healthy” by the Commonwealth of Massachusetts, and thus his nursing coverage was reduced–which meant we had to pay out-of-pocket for a good chunk. After lots of emails and phone calls, we managed to get many of the hours reinstated through the unhealthy winter months, but the loss of coverage took it’s toll on our checkbooks.

So the answer to the quiz? If you remember your SAT test prep class, you may also remember that if you don’t know the answer, you guess B!

This from a family with double health insurance coverage for their son. You can only imagine what it’s like for parents of children who have lifetime caps on their insurance plans, who have $1500 lifetime caps on durable medical equipment (a wheelchair alone costs over $15,000), children who need to take experimental drugs, and children whose families can’t afford any out-of-pocket expenses, period. Although the $21,000 was a staggering amount for us, we know how much worse it could have been. And I know how much relief the ACA will bring to families of children with medical complications–as long as it’s still in place come the end of June.


Prateep Ghose posted on March 27, 2012 at 2:27 pm

This is a factual and inspiring analysis of the Affordable Care Act, even though I am personally against the individual mandate. If every instance of ACA works this way, I will even swallow my personal distaste of the individual mandate, so that the rest of the ACA survives. You are indeed a passionate and convincing advocate for such public health policy issues. I love your zeal. Dad

Rani Elwy posted on March 28, 2012 at 7:00 am

Thanks Dad for even considering changing your views! The ACA won’t hold without the individual mandate. Insurers can’t cover people with pre-existing conditions without also covering the entire population, many who do not yet have any health problems. But since everyone with health insurance is currently covering those without, through “free care” pools at safety-net hospitals, or through the ER, we need to get to a point where everyone–whether they think they need it or not, because they will absolutely need it sometime–has health insurance. And then this way, everyone will have access to a primary care provider who can provide coordinated, continuous, patient-centered care–a big improvement from receiving primary care in the ER.

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