State waiting lists for the AIDS Drug Assistance Programs ( ADAP ) are skyrocketing with no relief in sight. The prospects are growing that Americans will die of HIV simply because they could not get life-saving drugs.
Officially, 1,924 people are now on ADAP waiting lists in 11 states, federal ADAP administrator Deborah Parham Hopson told the Presidential Advisory Committee on HIV/AIDS ( PACHA ) at its June 29 meeting. That is about 1 percent of the people served by the program.
Three years ago there were no ADAP waiting lists.
"This represents an increase of 269 people in the last week, and an increase of 730 people during the month of June," she said. "I have not seen such a rapid increased demand for ADAP during my entire 8 year tenure" with the program.
Those numbers mask an even greater problem. Louisiana stopped enrolling new ADAP patients in June and didn't even bother to set up a waiting list. As program administrator DeAnn Gruber said, "We don't want to give anyone false hope" that a person might eventually be added to the program.
The problem is money, or rather the lack of it. Even in the best of times, federal funding seldom has kept pace with the expanding epidemic.
States that added their own funds to the pot are no longer able to do so as local economies and revenue have tanked. Most state constitutions require a balanced budget, so they do not have the federal government's freedom of deficit spending.
Many other states have reduced the formulary of drugs they cover, while others have tightened eligibility requirements, making lower income working people ineligible for ADAP.
On July 1 Ohio lowered the income eligibility standards, and stopped paying for HIV drugs for 320 people.
New Jersey will cut the ADAP rolls by 600 Aug. 1.
None of those purged from the ADAP rolls will be counted as eligible for those services, further hiding the scope of the crisis.
Driving forces
A perfect storm of forces is driving the increased demand for ADAP resources.
The "natural" growth of people living with HIV in the United States is about 40,000 per year, once one subtracts deaths from estimated new infections. Federal funding has not kept pace with this growth.
Unemployment continues to hover around 10 percent. People have not only lost their job, they often have lost their health insurance as well. Those fortunate enough to be able to continue to pay for health insurance under COBRA provisions often have reached the end of the 18 month coverage of that program.
The Centers for Disease Control and Prevention ( CDC ) is rolling out a program to increase testing for HIV and make such testing a part of routine medical care. That means more people are learning their HIV status and want to begin treatment.
Finally, revisions to treatment guidelines last December now recommend starting therapy earlier. They say treatment should be started before a patient's CD4 count falls below 350; and patients should be given the option of starting a drug regimen once the CD4 count nears 500.
All of these factors have contributed to the pressure on ADAP.
Funding
AIDS advocates pushed for increased funding as part of the economic stimulus package earlier this year, but those pleas fell on deaf ears within the Obama administration and Congress.
Obama's budget for next year provides for a $20 million increase in funding for ADAP, but that is far short of the $126 million that the National Alliance of State and Territorial AIDS Directors ( NASTAD ) says is needed now.
A group of conservative Republican senators—led by Tom Coburn of Oklahoma, the former co-chair of PACHA—has proposed that the full $126 million be funded out of unspent stimulus money in the Department of Health and Human Services.
"At a time when waiting lists are growing with no end in sight and these patients no longer have access to their life-saving drugs through ADAP, there couldn't be a more appropriate funding stream to deal with the preservation of healthcare and the promotion of these individual's wellness," says Bill Arnold with the National ADAP Working Group.
The Obama administration has been slow to embrace this approach.
Advocates believe the situation will only get worse before it gets better.
