Since the advent of AIDS 30 years ago, a parallel health-care system has evolved for people with HIV/AIDS.
For the younger generation, there has always existed a Mazzoni Center, a Philadelphia FIGHT, an Action AIDS, an AIDS Law Project, this is the norm.
But it wasn’t always so. For no other disease is there a separate infrastructure set up to serve a particular customer in such a comprehensive way. Sure, there are specialists, surgeons, therapists, dentists. But for the most part, care is accessed through a primary physician.
Not so with AIDS care. Older generations undoubtedly know why; younger folks might not realize how and why this happened — primarily due to homophobia and AIDS-phobia.
When the disease began to take hold, many health-care and insurance providers refused to treat or cover people with AIDS. The only way for people to receive care was to establish separate institutions and facilities.
An entire movement sprung up, led by the LGBT community, to respond to these inequities. Gay activists pushed for attention, funding and research. Activists got politicians, the media and the public to pay attention to the epidemic and pass laws protecting people with HIV/AIDS from discrimination.
Though community-based service organizations have grown exponentially, they all started from activist roots. None of them — the AIDS Activities Coordinating Office contracts with 50 in Philadelphia — is over 30 years old.
Last year, the Obama administration released the first National HIV/AIDS Strategy and Congress passed the Affordable Care Act, both of which have the potential to radically change the way AIDS service organizations operate, to recreate the landscape.
For the NHAS, this is the first comprehensive, government-wide effort to combat and prevent the disease. It sets measurable goals in three areas: reducing new HIV infections; increasing access to care and improving health outcomes for people with HIV; and reducing HIV-related health disparities.
NHAS places a high priority on intensifying HIV-prevention efforts in the communities “where HIV is the most heavily concentrated,” using evidence-based approaches.
The impact of this is that agencies that do not provide prevention services may have more difficulty receiving federal funding. Additionally, there is concern the Ryan White Care Act may not be reauthorized in 2014.
As part of the ACA, insurers can no longer deny coverage based on a pre-existing condition, including HIV/AIDS, starting January 2014. The law also increases income levels for eligibility to Medicaid, which will include more poor people with HIV/AIDS.
Additionally, insurers can no longer impose a lifetime dollar limit on essential benefits, nor annual spending caps.
There will also be new health-care “homes,” with disparate health agencies partnering to provide coordinated care. One outcome of may be that HIV care may be rolled into general health care.
As federal agencies begin implementing NHAS and ACA takes effect, the impact on AIDS service organizations may be significant. There will be benefits and unintended consequences. As it did 30 years ago, it will be up to the community to focus on problems and get them resolved.