The ADAP Watch

From NAPWA: The National Association of People with AIDS

We entered the new year with more than 5,000 Americans on ADAP waiting lists - as of January 7, 5,154 that we know about. New numbers expected today from NASTAD are likely to be higher, as Virginia starts moving an expected 760 PLWHA currently getting their HIV drugs through Virginia's ADAP program from active to waiting list status.

The waiting list numbers are bad, but there's more to the story. State after state is avoiding waiting lists, or keeping its waiting list numbers low, by reducing the amount ADAP beneficiaries can earn and stay in the program. Ohio reduced its cutoff last summer to 300% of the Federal poverty level - just over $32,000 - disenrolling 257 clients. There's no way someone earning $32K can pay $20 to 40K per year in pharmacy costs. We don't have data to prove it - it's the sort of thing that's notoriously hard to monitor - but people are probably being driven out of self-employment into Medicaid. Florida has postponed hearings to reduce its cutoff to 300% FPL, but the reprieve is probably temporary. Arkansas' cutoff is set at 200% FPL, which barely covers rent and groceries, let alone $20K a year for drugs.

We hope that the states will reverse course as their budgets recover from the recession. It's possible, though, that waiting lists and very low income cutoffs will become the "new normal" in some states. All politics is local, and getting the ADAPs back to adequate funding levels is going to be as local as it gets - a state-by-state marathon for the HIV advocacy community.

State ADAP financing will get easier in 2014, when insurers will have to offer all comers the same coverage at the same price regardless of pre-existing conditions. The ADAPs will be able to pay their clients' monthly insurance premiums instead of paying directly for their drugs, so ADAP dollars will go farther. Until then, we will have to rely on pharmaceutical companies to be generous with patient assistance programs (PAPs) and support initiatives like the Welvista not-for-profit pharmacy's free drugs for people on ADAP waiting lists. Visit NAPWA's website for links to the major HIV drug manufacturers and their PAPs.