Domestic treatment access in 2005: warning: do not read this without the aid of a good antidepressant!

Ten years of HAART have taught us some painful lessons. As the community adjusted its hopes down from early predictions of viral eradication to a reality of life-long maintenance therapy, we have had to absorb the impact of long-term drug toxicities and face the demands of medication adherence. We are reminded that available drugs don't work for everyone as we have watched the clocks run out on our loved ones, and we have waited as scientific conferences come and go with no major breakthroughs. While we've become numbed to the deadly consequences of willful inaction on the part of industry and government globally, we are exhausted by the constant struggle for publicly funded treatment access here at home. The failure of our government to address the public health disasters created by the lack of universal healthcare continues to be amply illustrated by this epidemic.

Since the approval of the first protease inhibitors, there has been an uphill battle tot adequate funding tot the AIDS Drug Assistance Program (ADAP). Appropriated annually under the Ryan White CARE Act, ADAP funding levels are set at the discretion of the Administration and Congress. The waning commitment to domestic HIV care has led to inadequate funding for the past 5 years, with program waiting lists and access restrictions spreading across the country. As the payer of last resort, ADAP was designed to help those without other means to access lifesaving treatment. The lack of funding has placed thousands of patients at the mercy of drug company charity programs, if they have the support system to help navigate the various and varying requirements.

The Bush Administration has conducted an assault on Medicaid since the President came into office. This federal entitlement healthcare program for the very poor and disabled is relied upon by more than half of the people living with HIV/AIDS (PWAs) in the country. Led by the Administration and under the guise of "cost containment," the latest salvo this summer involves the Congress and state Governors in re-writing the entitlement by imposing mandatory co-pays and premiums for prescriptions and services. These proposed policies would disproportionately impact long-time survivors the most, those who are likely to be living on limited disability checks and need multiple prescriptions and frequent doctor visits.

While the new Medicare Prescription coverage taking effect in 2006 may help some higher income elderly Americans, the effect on those living with HIV will be very different. Sixty thousand PWAs on Medicare who have been getting their drugs through Medicaid will lose this comprehensive coverage on January 1, 2006, and be moved to limited private drug plans. Another 20,000 PWAs who do not qualify for Medicaid may lose their ADAP coverage depending on the state in which they live, and they will likely face higher co-pays, premiums, and thousands of dollars of out-of-pocket costs before qualifying for "catastrophic" coverage. The complicated transition between programs coupled with flat Ryan White funding for case management will likely be chaotic and could potentially lead to treatment disruptions for those least able to afford it.

Behind this dire landscape are drug companies that continue to raise drug prices at twice the rate of inflation, on top of pricing every new drug 20% to 50% higher than existing drugs in the same class. Those lucky enough to have private insurance are also no stranger to the effect of high prices, as co-pays and premiums reach outrageous highs as insurance companies attempt to pass the increases on to individual policyholders. While any reasonable price control legislation looks unlikely to materialize as long as our politicians remain in the deep pockets of the drug industry and its powerful lobby, we taxpayers are the ones paying for it. Access to treatment based on the ability to pay cannot be accepted as another ugly reality of HAART. As we mark the passing of HAART's tenth year, don't forget about the people we are leaving behind. The "new face" of AIDS in the US is that of the patient who, regardless of race, gender, or social standing, cannot access lifesaving care in the wealthiest country on Earth.

Help fight for domestic treatment access by joining the following national grassroots working groups:

To help fight for ADAP funding, join the Save ADAP Committee of the AIDS Treatment Activists Coalition (atac-usa.org), contact Ryan Clary at [e-mail].

To help fight federal Medicaid cuts and to improve Medicare, join the HIV Medicaid & Medicare Workgroup by contacting Lei Chou at [e-mail].

Lei Chou is the Director of Mobilization at the Community HIV/AIDS Mobilization Project (CHAMP): champnetwork.org.