Two years before that, he continued, a close friend needed proton therapy, but UHC refused to cover it until his friend paid $150,000 out of pocket and then threatened to sue. He opted for surgery, but the experts he’d consulted had told him proton therapy would have been his best radiation option. Two years earlier, Scola wrote, he himself had been diagnosed with prostate cancer. Cole paid for it himself-$85,000-then filed a class-action lawsuit in South Florida. UHC had refused to cover personal injury lawyer Richard Cole’s proton beam radiation therapy, a life-saving prostate cancer treatment it deemed experimental. Then again, most judges don’t use their recusal orders to call the country’s largest health insurer “barbaric.” Judicial recusals don’t typically generate national headlines. Keep pounding at the door, and eventually it may just open. If nothing else, her story is a case study in the virtue of perseverance. More than that, though, she discovered that no matter how powerless she felt going up against a behemoth, she could fight back, and she could win. Smith’s indefatigability gave her a rare window into a health care system that paradoxically produces life-saving medicines only to deny people access to them. These are multibillion-dollar corporations. BCBS refused.Īt this point, many people-perhaps most people-would have given up. Without it, Repatha would cost more than $14,000 per year. Immediately, Blue Cross Blue Shield (BCBS) of Alabama sent a notice that the medication wasn’t covered by her plan. Smith qualified on both counts.īakir prescribed Repatha, which had just hit the market. Designed for patients who can’t tolerate statins or have familial hypercholesterolemia, these medications showed enormous promise in early studies. Food and Drug Administration approved two PCKS9 inhibitors, a type of drug that helps the liver eliminate LDL cholesterol from the blood. Stephen Bakir, suggested she try something new. Statins caused such terrible body aches that “I couldn’t get out of a chair without assistance.” Her LDL (or “bad”) cholesterol level was through the roof-almost 400, she says-dangerous given her cardiovascular disease. By 2009, she’d had her third major heart surgery. Her physical detected a severe heart murmur. No one suspected a cardiac problem until she took a summer job as a stenographer at NASA in 1966. She had trouble breathing at times, but her family doctor chalked that up to asthma. A saxophonist, she marched in her high school band. Growing up in Huntsville, Smith was an active kid. Bicuspid valves tend to leak and narrow, which forces the heart to work harder. Smith was born with bicuspid aortic valve disease, a condition in which the valve that controls blood flow from the left ventricle to the aorta has two flaps instead of three. She called back and, as she describes it, “I threatened to go to the Blue Cross Blue Shield office, the main office, and chain myself to the door and call the news media and say, ‘Look what they’re doing to this poor old lady who’s just trying to get her drugs.’”Ī lifelong Alabama resident with the drawl to match, Smith speaks quickly and assertively, a demeanor that makes sense considering she’s spent her adult life with a “ticking time bomb” for a heart. I’m going to do something drastic here, the 72-year-old Smith recalls thinking to herself. “That’s our policy,” the supervisor said, and hung up. So one more time, Smith picked up the phone and called the toll-free number on the back of her Blue Cross Blue Shield insurance card. Her insurance company had no business telling her she couldn’t have it. There was a medication that could save her life when nothing else had worked. She was exhausted and exasperated, tired of hearing that the rules were the rules. After four years of fighting, Donnette Smith reached her breaking point.
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