A new internet video from the Romney campaign focuses on Ann Romney’s diagnosis with Multiple Sclerosis and how it affected the rest of the family. The ad’s apparent purpose is to humanize Romney—to portray him as a sympathetic, loving husband. That's just fine. MS is a serious, life-altering diagnosis and Romney is, by all accounts, a devoted family man. If telling people about this part of Romney's life makes him seem less aloof or more sensitive, I have no problem with that. The video is genuinely moving and, in a classy touch, it closes with a link for donations to the National Multiple Sclerosis Society.
But if you have MS, or any other serious chronic illness, you need more than a devoted spouse. You need a way to pay your medical bills. And, historically, many people with MS have struggled with that. MS is a long-term, progressively debilitating disease, requiring ever more costly treatments and equipment. The bills are high enough that even patients with private insurance have struggled with out-of-pocket expenses or run up against annual or lifetime limits on payments. And those patients have been, in some respects, the lucky ones. People who buy coverage on their own or through small businesses frequently end up with exorbitant rates or skimpy benefits, or can’t get coverage at all. Those are just some of the reasons the MS Society has long supported reforms that would, among other things, provide “comprehensive, quality health care available to all.”
In 2008, I happened to speak at the National Multiple Sclerosis Society’s annual meeting. I was touting health reform. This was a large, friendly crowd. Afterwards, an older gentleman hobbled over. Leaning on a huge antique walking stick, he recounted a host of complex medical and financial difficulties he faced with this painful disease.
MS is financially punishing for so many people who lack economic resources or insurance that really covers a complex chronic disease. A heartbreaking NPR story compared the experiences of two MS patients: one in Great Britain, and one in the United States. I’ll let you guess which one was driven to split his pills, became medically uninsured, qualified for disability but fell into the two-year Medicare waiting period, lost his home, and went bankrupt. Economic hardship and financial barriers to appropriate care are common among MS patients across the United States.
The Affordable Care Act will not fix all of these problems. The standards for insurance it sets allows for substantial out-of-pocket expenses, which means many patients with MS and other chronic disease will still struggle with the cost of care. But the health reform law will certainly make the situation better, by making sure almost everybody can get health insurance, no matter what their pre-existing conditions, and by making sure everybody’s coverage includes at least a minimum set of benefits and limits on cost-sharing. Although those changes won’t happen until 2014, a few of the law’s reforms have already started to take effect—among them, the elimination of those lifetime limits on benefits and an initial reduction of those limits on annual benefits. (The law eliminates the latter entirely by 2014.) These are just some of the reasons that the MS Society, like virtually every other chronic disease group, advocated for the law and endorsed it after enactment.
But patients with chronic disease like MS will lose most or all those protections if Romney becomes president and, as he has promised, he repeals the Affordable Care Act. He's promised to replace it with other reforms but, based on what he's said, his reforms won't be much of a substitute. Worse still, the tax and regulatory changes he's proposed would quite likely undermine existing insurance arrangements without providing a suitable alternative, as experts such as Harvard's David Cutler have pointed out. People with chronic disease who now rely on job-based plans could find themselves with weaker coverage, or even none at all.
Those who rely on Medicare and/or Medicaid to pay for MS treatments will also struggle if Romney gets his way. Although he has not been terribly specific about his plans for for Medicare, he’s made clear his intention to transform Medicare into a voucher program that no longer offers the same guarantee of benefits. Romney has been more specific about Medicaid: He intends to turn the program over to the states but with a lot less money, all but guaranteeing that states dramatically reduce either what or who the program covers.
MS belongs in this presidential campaign, along with every other major disease. But the conversation should go beyond what it says about Romney as a husband and father. It should include what it says about him as a potential president.
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