When my mother was diagnosed with carcinoid cancer in 2005, when she was 49, it came as a lightning shock. Her mother, at 76, had yet to go gray, and her mother's mother, at 95, was still playing bingo in her nursing home. My mother had always been, despite her diminutive frame, a titanic and irrepressible force of vitality and love. She had given birth to me and my nine younger siblings, and juggled kids, home and my father's medical practice with humor and grace for three decades. She swam three times a week in the early mornings, ate healthily and never smoked.
And now, cancer? Anyone who's been there knows that a cancer diagnosis is terrifying. A lot goes through your mind and heart: the deep pang of possible loss (what would my father and all of us do without her?), and the anguish and anger at what feels like injustice (after decades of mothering and managing dad's practice, she was just then going back to school).
We, as a family, were scared and angry, but from the beginning we knew we would do all we could to fight this disease. We became involved with fundraising for research, through the Caring for Carcinoid Foundation in Boston; we blogged; we did triathlons (my mother's idea) and cherished our time together as never before.
Carcinoid, a form of neuroendocrine cancer, is a terminal disease but generally responds well to treatment by Sandostatin, a drug that slows tumor growth and reduces (but does not eliminate) the symptoms of fatigue, nausea and gastrointestinal dysfunction. My mother received a painful shot twice a month and often couldn't sit comfortably for days afterward.
Getty Images
As with most cancers, one thing led to another. There have been several more surgeries, metastases, bone deterioration, a terrible bout of thyroiditis (an inflammation of the thyroid gland), and much more. But my mother has kept fighting, determined to make the most of life, no matter what it brings. She has an indomitable will and is by far the toughest person I've ever met. But she wouldn't still be here without that semimonthly Sandostatin shot that slows the onslaught of her disease.
And then in November, along with millions of other Americans, she lost her health insurance. She'd had a Blue Cross/Blue Shield plan for nearly 20 years. It was expensive, but given that it covered her very expensive treatment, it was a terrific plan. It gave her access to any specialist or surgeon, and to the Sandostatin and other medications that were keeping her alive.
And then, because our lawmakers and president thought they could do better, she had nothing. Her old plan, now considered illegal under the new health law, had been canceled.
Because the exchange website in her state (Virginia) was not working, she went directly to insurers' websites and telephoned them, one by one, over dozens of hours. As a medical-office manager, she had decades of experience navigating the enormous problems of even our pre-ObamaCare system. But nothing could have prepared her for the bureaucratic morass she now had to traverse.
The repeated and prolonged phone waits were Sisyphean, the competence and customer service abysmal. When finally she found a plan that looked like it would cover her Sandostatin and other cancer treatments, she called the insurer, Humana, to confirm that it would do so. The enrollment agent said that after she met her deductible, all treatments and medications—including those for her cancer—would be covered at 100%. Because, however, the enrollment agents did not—unbelievable though this may seem—have access to the "coverage formularies" for the plans they were selling, they said the only way to find out in detail what was in the plan was to buy the plan. (Does that remind you of anyone?)
With no other options, she bought the plan and was approved on Nov. 22. Because by January the plan was still not showing up on her online Humana account, however, she repeatedly called to confirm that it was active. The agents told her not to worry, she was definitely covered.
Then on Feb. 12, just before going into (yet another) surgery, she was informed by Humana that it would not, in fact, cover her Sandostatin, or other cancer-related medications. The cost of the Sandostatin alone, since Jan. 1, was $14,000, and the company was refusing to pay.
The news was dumbfounding. This is a woman who had an affordable health plan that covered her condition. Our lawmakers weren't happy with that because . . . they wanted plans that were affordable and covered her condition. So they gave her a new one. It doesn't cover her condition and it's completely unaffordable.
Though I'm no expert on ObamaCare (at 10,000 pages, who could be?), I understand that the intention—or at least the rhetorical justification—of this legislation was to provide coverage for those who didn't have it. But there is something deeply and incontestably perverse about a law that so distorts and undermines the free activity of individuals that they can no longer buy and sell the goods and services that keep them alive. ObamaCare made my mother's old plan illegal, and it forced her to buy a new plan that would accelerate her disease and death. She awaits an appeal with her insurer.
Will this injustice be remedied, for her and for millions of others? Or is my mother to die because she can no longer afford the treatment that keeps her alive?
Like every American, I want affordable health care, and I'm open to innovative solutions of all kinds—individual, corporate, for-profit, nonprofit and public. It will take all of these, and all the intelligence, creativity and self-discipline we have, as well as everything we can offer one another as families, neighbors, friends and citizens—and it still won't be perfect. But it is precisely because health care for 300 million people is so complicated that it cannot be centrally managed.
The "Affordable" Care Act is a brutal, Procrustean disaster. In principle, it violates the irreducible particularity of human life, and in practice it will cause many individuals to suffer and die. We can do better, and we must.