The first call Sheldon Goldberg got on his first day as president of the Alzheimer's Association was not from a patient or a doctor but from Michael D. Bromberg, chairman of the Capitol Health Group, a well-connected Washington lobbying firm.
"He said he had a problem," Goldberg recalled, "and the problem was the position of the Alzheimer's Association."
Bromberg represented an industry that stood to make millions if PET scans -- already used to help diagnose some cancers -- were to be reimbursed by Medicare as a test for Alzheimer's. Medicare officials had already said no, citing inadequate evidence that PET was useful in diagnosing the disease.
Independently, the association's experts had concluded the same.
Bromberg aimed to change Medicare's mind, but that would be tough without the association's support. If the nation's largest Alzheimer's advocacy group saw no value in PET -- short for positron emission tomography -- why should the government pay for it?
Last month, 21 months after Bromberg's call, Medicare announced that it will start paying for PET scans for some patients suspected of having the brain disease. How the agency came to that decision is a quintessential Washington tale of politics and persuasion -- and of how difficult it can be for a science-based agency to hew to evidence when it sits at the crossroads of medicine and money.
The Centers for Medicare and Medicaid Services (CMS), the agency overseeing Medicare, is bound by law to pay only for "necessary and reasonable" tests. But the PET industry did not conduct new studies or gather fresh evidence of its usefulness after being turned down for Alzheimer's coverage in 2003. Instead, PET proponents took a political path.
The first step, according to several people involved, was to persuade the Alzheimer's Association to soften its stance on PET. Then, they said, they played a card that had paid off for them before: a longstanding friendship between Michael Phelps, PET's inventor, and Sen. Ted Stevens (R-Alaska), chair of the appropriations committee that controls CMS's purse strings.
The Senate's senior Republican is famed for getting his way, often by refusing to bring spending bills to the floor until pet provisions are added. "It's never decided until we win," Stevens boasted last year.
Working with his chief health adviser, Elizabeth Connell, Stevens put that philosophy to work for Phelps by putting pressure on Medicare officials and on Health and Human Services Secretary Tommy G. Thompson.