Gilead Sciences, the pharmaceutical giant that makes Atripla, touts its "co-pay coupon" and patient assistance program to help people with HIV afford its latest highest-ever-price combination drug, Stribild, introduced at $28,500 for a year's supply. Company spokesperson Erin Rau told me in an e-mail the price "reflects a reasonable return" on its product development investment.
AIDS advocates have heard that one before.
Michael Weinstein, president of the Los Angeles-based AIDS Healthcare Foundation, told Business Wire, "Drug pricing today is an elaborate shell game: a company like Gilead brings a drug to market, prices it at a ridiculously high price, but then quickly offers price cuts, rebates and reductions on a case-by-case basis to insurers, federal and state government health officials and others--all under a cloak of secrecy from the public."
But secrecy isn't the only problem. Silence--specifically the silence of advocacy organizations concerned about their own viability and uninterrupted paychecks for their employees--is doing no good for the clients the groups claim to represent. Michael Weinstein told me in an interview, "Now you have a kind of 'AIDS, Inc.', a permanent bureaucracy, and it's being supported by these [pharmaceutical] companies."
What happens when they speak out, challenging the 'benevolent' image of themselves the drug companies wish for themselves? Weinstein recalled AHF's own experience. "We had a grant from Gilead for $2 million a year going back to 2005. As a result of our advocacy it was canceled this year. The money they are sprinkling around can be withdrawn."
Speaking out, however, is what advocates must do. As Senator Sanders told me, change won't come about until there is enough grassroots pressure on Congress to make change. "One of the goals of grassroots efforts is to take on Pharma," he said.
But it's not only up to individuals and patient advocacy groups. New York-based Housing Works CEO Charles King, one of the nation's most independent and outspoken HIV/AIDS advocates, told me changes in prescription drug costs also depend on large public programs -- Medicare and Medicaid in particular -- using their tremendous purchasing power to negotiate better prices. King said Medicare, the federal insurance program for seniors, "is big enough where it could truly negotiate the best price -- and that would provide leverage for other payers to work for the best price."
Making clear that the cost issues related to HIV medications are no different than other prescription drugs for chronic conditions, King pointed out that, whether it's HIV, asthma, diabetes or something else, chronic conditions "have a disproportionate impact on marginalized populations." Those populations, particularly African-Americans and Latinos, also tend to have higher rates of other chronic conditions besides HIV infection.
Not that more affluent people don't develop chronic conditions that require expensive prescription drugs to manage. But when Phil Michelson in TV commercials lauds the way Enbrel helps manage his psoriatic arthritis, the professional golfer, with an estimated net worth of $150 million, doesn't mention co-pays on the $100,000-plus per-year drug. After all, he can simply have his accountant pay them out of petty cash. Most Americans don't have that luxury.