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epublicans in Congress have started the process of repealing the Affordable Care Act despite great uncertainty about what might come next. As cancer survivors in our 30s, we are all too familiar with life’s uncertainties. That is why we are especially attuned to policies that would adversely affect the 22 million Americans who gained coverage under Obamacare, and specifically the 27 percent of the non-elderly adult population with preexisting conditions who would have been excluded from receiving health coverage before the ACA.

President-elect Donald Trump and the GOP supposedly intend to keep the provision of the ACA that guarantees health insurance coverage to those with preexisting conditions. But without a replacement plan on record, there is no way to determine whether any so-called guarantee would provide them with equal and affordable coverage.

Specifically, individuals like us are wary that a replacement plan may force insurers to cover everyone but let them create other mechanisms that limit coverage for those most in need, such as imposing annual or lifetime maximums that would cap total expenses paid by insurance plans. The costs of our treatment illustrate why this is a dangerous proposition for many people with preexisting conditions.

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Jen was a new mother when she was diagnosed at age 32 with stage 4 metastatic breast cancer, which typically has a survival time of two to three years. Jen began broad-spectrum chemotherapy, along with targeted agents aimed at destroying her cancer. Over the next several years, she underwent multiple surgeries, five weeks of radiation, and either chemotherapy or targeted treatments every three weeks. Jen had nearly 80 of these treatments, which cost close to $15,000 per session. The estimated cost of her care has been well over $1 million. She is now 38, her son is in kindergarten, and, miraculously, close monitoring by specialists and regular scans show no evidence of active disease.

Ben was diagnosed at age 33 with a high-grade primary brain tumor called a glioblastoma, which has no known cure. Over the following months, he had a biopsy, a 12-hour surgery, four extended hospital stays, six weeks of radiation, a year on an oral chemotherapy agent, scads of tests, and dozens of appointments with specialists and rehab therapists. Now age 35, the estimated cost of his care is already well over $1 million, with the surgery alone costing over $500,000. While Ben’s condition has stabilized, he will likely confront a recurrence in the future, which will reopen the gamut of treatment options — and costs.

The two of us are fortunate to have been well-covered by health insurance at the time of our diagnoses. We did not have to choose between lifesaving care or bankruptcy — one of the goals of the ACA.

We had the flexibility to seek out the best care for our diseases. Others in our age group who were struggling to make ends meet or who did not qualify for employee-based health insurance plans may have chosen not to get covered — only to have a life-threatening illness strike out of the blue. Before the ACA, they would have been refused coverage after a new diagnosis. Under the ACA, however, they are protected from being charged more due to their preexisting conditions.

We fear that an immediate repeal of the ACA will not protect people like us with serious health concerns. Speaker Paul Ryan’s general plan, A Better Way, says, “No American should ever be denied coverage or face a coverage exclusion on the basis of a pre-existing condition.” But nowhere does it say that insurers or states must offer affordable plans to cover preexisting conditions or expensive medications. That would translate to higher premiums and lower-quality care.

Instead, A Better Way would create state-run high-risk pools for those ineligible for health insurance due to preexisting conditions. The federal government would reimburse states with $2.5 billion a year over 10 years due to anticipated costs, and states would be expected to “maintain the actuarial solvency of these programs,” meaning they must create programs that the federal government will not subsidize beyond a certain point. The states, many of which are already in dire financial circumstances, would have to negotiate reimbursements with the federal government — and do so knowing that high-risk pools have a history of losing a lot of money.

According to a Kaiser Family Foundation study, the 35 states that offered high-risk pools in 2011 (before the ACA) lost around $1.2 billion and only covered 226,000 people. Actuarial solvency really meant restricting coverage in order to save states money at the expense of patients in need of care.

California’s high-risk pool imposed an annual maximum of $75,000 (which would maybe pay for a week in the hospital) and a lifetime maximum of $750,000 (the equivalent of a couple complex surgeries like the one Ben needed). Yet California’s pool still lost $23 million in 2011. Illinois offered a more generous $2 million lifetime maximum, and lost $115 million in 2011 — and Illinois only included 20,000 participants in its 2011 pool.

If we had been covered by California’s high-risk pool when we were diagnosed with cancer, we would have easily exceeded our annual maximums even before our surgeons picked up their scalpels. Forcing people like us into high-risk pools is not only financially unsound but ethically questionable. It would provide what researcher Jean P. Hall called “coverage that fails to meet the often greater needs of people with chronic conditions,” in an article for The Commonwealth Fund.

People like us are not the only ones concerned with an immediate move to repeal Obamacare without a clear plan for a replacement. Major hospital groups have warned against a quick repeal because of the immense revenue losses they would incur if 22 million people were to lose their coverage. This week, the American Medical Association, representing doctors around the country, issued a similar warning. And even conservative health policy analysts have said that a repeal and delay strategy “carries too much risk.”

We agree with Republican Senator Lamar Alexander, who chairs the Senate’s Committee on Health, Education, Labor, and Pensions, when he says “we need to figure out how to replace it before we repeal it.” We hope that Senator Alexander and others will hold hearings so the estimated 52 million non-elderly Americans with preexisting conditions can voice the real-life impact of returning to a world where they would be denied coverage or face annual or lifetime maximums that would cover only a fraction of their lifesaving care.

Jen Campisano is a mom and patient advocate writing about her experiences with stage 4 breast cancer at www.boobyandthebeast.com. Ben Fishman is a member of the National Coalition for Cancer Survivorship’s Policy and Advocacy Team.

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  • Your comment suggests that Jen and Ben somehow had some type of knowledge/control over the costs of their treatments and could have selected less expensive care. My experience is that there is no standard cost for almost any medical procedure and the patient has limited ability to question or challenge costs. Our family recently had the experience of two members undergoing very similar allergy testing. One cost less than $1000 while the other was over $7000. In both cases we started with appointments at our local hospital but in the second case the testing appointment was only done at the doctor’s “other” office. We only found out after the fact that this other office (in an office building on Rt 9) is deemed a hospital and therefore the justification for the 7x increase in cost. How is any individual supposed to counter this kind of billing shenanigans? The insurance company doesn’t care – that higher cost just gets built into the premium increase for the next year.

  • There needs to be a compelling way to CONTROL COSTS when it comes to medical spending.

    Why should the treatment for both the authors cost over $1M *EACH*?

    Everyone CANNOT live in a Mansion, drive a Ferrari/Cadillac, or have a vacation home, or consume any food they chose.

    Yet the authors expect that, without any cost imposition on themselves, that they can “consume” the best/MOST EXPENSIVE health care possible.

    How about the following: Everyone gets Health Insurance, of upto $250,000/yr. Want more coverage, “just in case”, then YOU PAY MORE in premiums.

    You dont CHOSE to pay more, and spend that $$$ on something else, and THEN suddenly come up against a potential $1M treatment cost, you deal with it.

    That $750,000 gap isnt paid for by “the insurance company”. Its paid by EVERYONE ELSE in the form of higher premiums.

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