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bag, and squeeze it with one hand while trying to reach the office manager on her cell phone with the other. If Will, whose bedroom was directly above our temporary quarters in the dining room, were to wake up and cry because of all the commotion, Dana couldn’t go up to comfort him. If anything else were to go wrong—such as an episode of dysreflexia, which can cause a heart attack or stroke if not treated immediately—we would be out of luck, because Dana couldn’t abandon the ambu bag. Considering all the necessary steps, Dana would have to keep me alive for at least three hours until I was hooked up and breathing on a new vent.
    During negotiations with our insurance carrier we discovered the main reason patients are routinely denied even the essentials: only 30 percent fight back. Since 70 percent of their policyholders are easily intimidated, there is no upside for compliance. Moral responsibility does not drive the insurance industry. Threatened lawsuits are often necessary to get results.
    We didn’t have to go that far. But it did take repeated “Letters of Need” from Dr. Kirshblum and theKessler administration, submitted and resubmitted for more than six weeks, before we were finally granted round-the-clock nursing care for the term of the policy. They never did pay for a backup vent. We bought one ourselves for $3,500 because we could afford it. (It turned out to be a more than worthwhile investment because the vent has failed a number of times over the years.) But what about others in a similar situation who simply don’t have that kind of money?
    Since then we have developed an excellent working relationship and have not had to lock horns with our carrier. But the solution to the nursing problem only introduced us to another one: lifetime caps. Now we were receiving the benefits we needed, but my care was (and still is) very expensive. If all we had was our primary policy, at some point we would exhaust our coverage by reaching the lifetime cap of $1 million. After that we would be on our own. Fortunately I am a member of three unions—the American Federation of Television and Radio Artists, the Screen Actors Guild, and the Directors Guild of America—which meant that $3 million of coverage was available. Most people only belong to one union or have only one privately owned policy. In the event of a catastrophic illness or disability they will probably reach the cap in less than three years. After that they often have to sell their homes or use their retirementsavings to afford quality care. If the care requirements continue, the end of the line is placement in a nursing home. I think most nursing homes are merely human parking garages: patients are maintained but there is little or no physical therapy. The usual consequence, especially for younger individuals who end up there, is serious depression. I have not run through all three of my insurance policies—yet.
    My first political activity as a patient advocate was an effort to raise lifetime caps. Vermont senator Jim Jeffords called in May 1997, asking me to support S.1114, the Lifetime Cap Discrimination Act. We held a press conference in June; then in July, seeking a cosponsor in the House, I wrote a letter that was copied and hand-delivered to all 436 members. It said, in part:
    A million dollar policy purchased in 1970 is worth only about $100,000 today. It is ironic that a policy meant to give customers peace of mind is now being used to force them out of the private insurance market.… It is estimated that only about 10,000 people will exceed their lifetime cap in the next five years. Raising lifetime caps will cause an insignificant increase in premiums (small businesses are exempt under this legislation).… More than 150 organizations support this bill, whichwould raise lifetime caps from $1 million to $10 million, to ensure that health insurance is there when people need it most.
    The bill was defeated in the Senate, 56 to 42, probably