Silent Treatment: Patient groups refuse to speak the truth about high drug prices, and were all paying for it.

AuthorGoozner, Merrill

Hill staffers know the drill. Every time legislation to limit drug prices begins to move, patient advocacy groups visit their offices, accompanied by sick and dying patients flown in for the occasion. Their mission: to stop any law they fear will decrease spending on drug research.

Take, for example, the response from patient groups to a Trump administration effort in 2018. Borrowing from what left-of-center groups have advocated for years, the Centers for Medicare & Medicaid Services proposed pegging prices for some drugs to the far lower prices paid abroad.

"Why should other nations like Canada--why should other nations pay much less than us?" the president shouted last July before helicoptering off for another round of golf. "They've taken advantage of the system for a long time, pharma." Indeed, a recent study published in Health Affairs found that the 15 largest drug companies generated an additional $116 billion in revenue by charging higher prices in f America than they charge in Europe for the same drugs.

With that and other proposals to lower drug prices on the table, patient advocacy groups--led by some of the nation's preeminent cancer, AIDS, and rare-disease charities--sprang into action. Only, it wasn't in support of lower prices. Rather, they mobilized their lobbyists and extensive grassroots networks in opposition.

A typical position comes from Carl Schmid, the former deputy executive director of the AIDS Institute and current cochair of the Presidential Advisory Council on HIV/AIDS. "We don't support the international pricing index or negotiations by Medicare" to lower drug prices, he told me last year, when he still worked at the AIDS Institute. The American Cancer Society Cancer Action Network (ACS CAN) also opposed the proposal. It was consistent with their past stances. Early last year they spearheaded a national ad campaign condemning a different cost control measure proposed by the administration. "When you limit drug therapies, you threaten lives," read the headline of a full-page ad, signed by 57 patient advocacy groups, that ran in The New York Times, The Washington Post, and other publications, according to ACS CAN's spokesperson.

The American Cancer Society, one of the nation's oldest, largest, and best-funded patient advocacy organizations, is among more than 1,000 disease-specific patient advocacy groups registered as nonprofit charities. They range from other large and well-heeled organizations, like the American Heart Association, to small groups advocating for patients with rare diseases. Almost none have challenged the pharmaceutical and biotechnology industries over prescription drug prices. Often, in fact, they go to bat for the doctors and hospitals who get a bigger cut when drug prices surge.

To explain this paradox, congressional studies and investigative press reports often point to the large donations pharmaceutical companies give to disease advocacy groups. A 2017 survey published in The New England Journal of Medicine, for example, found that 86 of the 104 largest organizations admitted accepting donations from the pharmaceutical industry, with most of the rest failing to disclose who their donors are.

What gets less attention is the substantive argument that most disease advocacy groups at least tacitly endorse. Since the 1950s, the drug industry has advanced a single idea to justify high prices: Without them, private-sector...

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