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The Elephant in ADAP’s Living Room

We have all heard multiple stories about the crisis in ADAP funding. State after state, experiencing unprecedented budget deficits (and governing bodies that refuse to consider raising taxes, even though most people support it), which have forced them to take the draconian step of instituting waiting lists for those who need ADAP in order to gain access to HIV drugs.

We have also heard from advocates and medical experts warning of the long-term results of waiting lists: Increased infection rates, people not getting tested because they can't afford treatment if they do test positive, more incidence of faster advancement from HIV to AIDS because there are no drugs to halt the progress, more hospitalizations due to opportunistic infections, more deaths.

But the one thing that no one seems to want to say out loud is the brutal truth: If you are on a waiting list, one of three things has to happen in order for you to move up – either someone who’s getting their drugs through ADAP now has to gain the money and/or insurance to pay for them; the money to fund the ADAP you’re waiting for has to be provided; or someone must die for you to advance. That is, if you don’t die first and provide someone else with the upward move. One thing is certain - no one on a waiting list is going to finally get their meds because someone before them somehow got cured and doesn’t need them anymore.

We’ve all experienced waiting lists. You give your name to a hostess at a crowded restaurant and sooner or later she calls your name because someone else’s meal is over; you put your name on a list to receive a DVD that’s coming out in two months; you put yourself on stand-by because that’s cheaper than buying a full-fare plane ticket. But the only other waiting list as dire as ADAP’s is the one for organ transplants.

Politicians like to bandy about phrases like, “life-saving medications,” and “access to urgently needed treatment,” but no one in Washington is saying, “when someone else dies,” or “if you don’t die waiting.” So where should the line be drawn by legislators trying to “do what’s best” for their cities, states, and the country?

Also unspoken is the suspicion of some in the HIV community that in the dark corners of negotiation of backroom deals and debate in committees and sub-committees, unless a legislator has been touched by HIV/AIDS, either personally or indirectly, there is the question, “Compared to national security (or jobs or the economy or education or union pensions or the oil spill, etc., etc.), so what if a few of those people die? Most of them are on Medicaid anyway.” To paraphrase Ebeneezer Scrooge, “If they’re going to die, best they get on with it and reduce the HIV-positive population.”

There can be no argument that the problem of what to do with sick people who can’t afford to buy the medical care that would make them well, or at least allow them to manage their illness, is not solved by the current so-called health care reform, nor is there any doubt that programs like ADAP are a drain on an already overloaded system. But the bottom line is this: Unless ADAP is saved by the Access ADAP Act (Senate bill 3401), currently under debate in Congress, or by a miracle mega-coalition of billionaires, there will be people halving their doses, sharing meds, not taking meds, getting sicker and, finally, dying. If political “leaders” think it’s bad now, just wait until the elephant starts to stampede. Unless everyone who is living with HIV/AIDS, providing services to them, working with them, loving them – unless we ALL start saying it out loud, the elephant in the room is going to run us over.