For Americans with HIV, there are many obstacles to successful treatment

The best ADAP prices are now roughly 50 percent below retail, with a year’s worth of medicine costing $10,428 on average. In contrast, first-line antiretroviral combinations for use in Africa can cost as little as $183 per year — less than 1 percent of their retail price in the United States. (The cheap drugs are generic versions made in India through special arrangement with pharmaceutical companies, which make little or no money from the drugs’ sales in low-income countries. The generics can’t be sold in the United States and other places where the pharmaceutical compounds are still protected by patents.)

As the recession has progressed, ADAP directors have jawboned drug companies to lower prices further. Many have agreed. Last year, the average monthly cost of an ADAP client’s drugs was $80 less than in 2010.

Gallery

A photographic history of the AIDS epidemic in the United States.

“If they didn’t do this, the AIDS community was going to give them a lot of bad publicity,” said Cross, who is now a consultant. “Also, if they didn’t do it, they would end up seeing the patients through their own patient-assistance programs.”

Access to AIDS medicines, however, is not an entitlement, and waiting lists at ADAPs have been common over the past 15 years.

As of this month, about 2,000 people in nine states were on ADAP waiting lists that ranged in size from from a single person in Montana to 570 people in Virginia. That may change soon. On July 13, Virginia’s health commissioner, Karen Remley, announced a plan she says will eliminate her state’s waiting list by mid-September. On July 19, Kathleen Sebelius, secretary of the U.S. Department of Health and Human Services, said that $69 million will be transferred to 25 states, clearing all lists.

In September, waiting lists contained nearly 10,000 people. By World AIDS Day on Dec. 1, it was a national embarrassment.

At an event that day at George Washington University, President Obama announced that $35 million more would be provided to ADAPs in an effort to whittle down the lists. Speaking by videolink, former president Bill Clinton made a suggestion that made almost as much news: He proposed that Congress allow generic versions of patented AIDS drugs to be sold in the United States under certain circumstances until 2014, when the economy would presumably be healthier and the Obama health-care law in full effect.

The idea went nowhere.

“The reality is that just could not have happened,” said a health specialist in the office of Rep. Barbara Lee (D-Calif.) who was involved in follow-up discussions with pharmaceutical companies after Clinton’s speech. ADAPs and other needy buyers would get used to the low prices and protest when they shot back up in two years.

“Once you go generic, you can never go back,” the staff member said. “Very quickly, the discussion shifted from that to something else.”

The “something else” is an effort to make it easier for people to get free AIDS drugs from pharmaceutical companies. Those companies’ patient-assistance programs (PAPs) are the final safety net for HIV-positive Americans. Each year, about 25,000 people get their medicines that way. The companies do this for both humanitarian reasons and because it establishes brand use, if not brand loyalty.