For those of us living in the HIV/AIDS community, this is the annual refrain we’ve heard since the Ryan White Care Act was first authorized in 1990, and it is a refrain which we will likely continue to hear ad nauseum until most of us are long-since dead of old age. What is wonderful about the Ryan White Care Act is that it enabled an entire generation of first-round AIDS survivors access to treatments, medications, and medical services that were, up to that point, a high-priced pipe dream that led to a pine box surrounded by the tens of our friends who were left to arrange the funeral.
I know that introduction sounds considerably morose – one might suggest that it is cynical; however, it is the constant repetition of the Funding Refrain that has lulled many of our national HIV/AIDS lobbying organizations into a persistent vegetative state. Pursuing additional funding on the national level (as opposed to the international level) has become a process of celebrating minor victories and scrambling to scoop up whatever scraps are thrown our way – and yet, despite these considerably minor victories in increased funding, still our local-level clinics, providers, and non-profits struggle to provide the services for which the national organizations claim they’re fighting.
For twenty-one years we have watched these organizations squander our limited resources in exchange for highly paid executives, increasingly limited access to people who can actually help our cause, and depressingly minor victories. These groups have siphoned the money from our pockets for over two decades, always claiming that they are in dire straits, all the while playing the roll of Showershot Socialites, throwing lavish parties, a seemingly endless number of self-congratulatory awards ceremonies, and falling all over themselves to let us know that our dollars are going to good use; that we’re getting “unprecedented” access to officials sympathetic to our cause.
To quote David Sedaris, “If you’re looking for sympathy, you can find it between “shit” and “syphilis” in the dictionary.
It is time to face a stark reality – the funds are, indeed, drying up. More accurately, the funding was increased after remaining stagnant for nearly a decade, but that increase was transparently insufficient to keep up with a growing epidemic of new infections, longer life spans due to better treatments, and the inconvenient blessing that HIV/AIDS is no longer a death sentence. This time, however, we are faced with a legislature who insists that whatever funds are added must be offset by cuts elsewhere, meaning that someone’s pet project is going to get its funding cut, and someone, somewhere is going to throw a hissy fit over the proposal.
Unfortunately, the people throwing the hissy fit are those in the HIV/AIDS establishment. Despite the mounting evidence that the accepted and traditional methods of HIV lobbying are failing to net the results needed to sustain vital programs like Ryan White, ADAP, and HOPWA, these organizations continue to rely upon the brand names they acquired twenty and thirty years ago when they actually exhibited effective leadership and lobbying skills.
What is more unfortunate is that the results of a decade of basically fruitless lobbying efforts (i.e. – inadequate funding) fall upon the local organizations struggling just to keep their doors open during a recession unlikely to end anytime soon for those making fewer than six figures. In Long Beach, CA, preliminary numbers for incoming donations to help provide vital services for clients have shown nearly a 50% drop over the past two years. The HOPWA program in Los Angeles County, designed to provide living assistance for those on a fixed income living with AIDS, has all but ground to a halt because Section 8 housing has not opened up for new applications in over two years. Rural clinics across the country are seeing their funding slashed as the limited resources are redirected to more densely populated (and often more ethnically diverse) areas of the state, leaving those with the least access to competent and quality health services with nowhere to turn.
We live in unprecedented times…and that requires unprecedented measures. The time has come to reevaluate our collective approach to lobbying for our cause, and to recognize that we cannot rely on our traditional allies to help us if they are unwilling or unable to do so. It is time to come up with a new strategy, and to do so, we must face the new realities of 21st Century HIV/AIDS Funding:
1.) The gay and minority communities are tapped out.
There is only so much money we can continue to expect from a small percentage of affected communities, and their coffers are running on fumes. We need to branch out to incorporate others into our fight; we need to model ourselves off of the Breast Cancer campaign. They managed to take a silent killer that no one spoke about for most of the 20th century and turn it into the most profitable, best-funded example of great marketing, organization, and leadership in the healthcare community. Would Breast Cancer lay back and watch its funding get slashed? I think not.
Breast Cancer has massive corporate sponsors like Major League Baseball – an entirely male organization that sports several prominent members who are survivors of Prostate Cancer (which saw nearly 10,000 more new cases in 2010 with a higher male mortality rate). Yet, still – Breast Cancer wins the day while Prostate Cancer stays in the shadows.
Where are OUR corporate sponsors? For the most part, we have relied upon the pharmaceutical companies to provide us the sponsorship and ad space we need to get our messages out. That has to end.
2.) We can no longer rely on the Democratic Party to be our staunch allies.
Regardless of how many promises they make, initiatives they support, or awards we throw at them, the Democratic Party can no longer be counted upon to help us accomplish the goals necessary to maintain viable programs for low-income individuals over the long run. The 90s are over, and it’s high time that we stop pretending that they’re going to return.
[Photo: AIDS Healthcare Foundation protesting then-House Speaker Nancy Pelosi as ADAP waiting lists exploded from 99 people living with HIV/AIDS to several thousand]
Time and again, we’ve been duped into believing that the Democrats were going to fight in our name and help to better our circumstances, and due to either a lack of spines or the new political realities of the 21st Century, they lack both the will and the ability to get the job done. This means we must turn to other resources, and those cannot be obtained at an all-Dem fundraiser, cocktail party, or awards ceremony. They must be brought over to our side by showing them the realities of HIV/AIDS funding in their own districts; in their own hometowns.
Republicans are responsible for the largest increase in U.S. international aid in the last thirty years. By comparison, the increase on the national level brought to us by the majority Democratic legislature paled so much that I am forced to admit (much to my chagrin) that the GOP has done better for HIV/AIDS in the last decade.
3.) We need to create new allies out of old enemies.
While the 80s and 90s engrained in our community the belief that the Democratic party would forever be our allies, there was and equal and opposite reaction for the Republican party. It is impossible for many of us to forget when many prominent GOP legislators stood before the houses of Congress to suggest that we be rounded up, sent to an island, and exterminated; that we be visibly tattooed to display to others that we had AIDS. The specter of shared history in Germany during World War II seemed to be coming back to haunt us.
[Photo: Former California Republican Congressman Bob Dornan symbolized the anti-AIDS rhetoric coming from many within the Republican ranks during the 1980s and 1990s]
Unfortunately, the GOP has for nearly forty years been held hostage by the Religious Reich – the Talibangelicals who refered to us as Sodomites, insisted that allowing us to live will exact God’s revenge on the world through AIDS, and stated that our disease is God’s punishment for our war against nature. It is disheartening that this movement still holds such a stranglehold over the most extreme elements of the GOP that even the most moderate candidate must skew his views drastically to the right simply to get nominated and elected.
There is light at the end of that tunnel, however – an increasing number of studies and polls have shown that grip to be weakening, particularly with people under the age of 45. The younger generation of GOP activists, though we may not agree with their approach to fiscal governance, are more than understanding of our plight, and can become if not powerful, then at least new allies in our fight to maintain relevance.
It is incumbent upon our community to welcome these new comrades into our fold – we must set aside our feuds and grudges, and stop holding the young responsible for the faults of the old. We must ensure that we make solid allies of them while we wait for their gerontocracy to die and for their influence to die with them.
4.) Our message no longer resonates with the general public.
Once again, the Breast Cancer lobby is a great example of how to make a disease that saw new cases in only .08% of the U.S. population in 2010 the largest money making health lobby in the world. They bring the message home to the American public by de-stigmatizing the disease and making it accessible. They’ve made it the “sexy cancer,” to use the words of a colleague of mine.
We have done something similar. We’ve taken a chronic illness that once meant certain death and turned it into a manageable disease represented by muscular, beautiful models whose struggles with HIV led them down the path to Gold’s Gym. Gone are the wasted, lesion-ridden faces of the 80s and 90s; gone are the people who are less successful at fighting their disease, or whose strains are multi-drug resistant.
We need a new marketing strategy – one that doesn’t hide the reality of the disease. The current strategy, while successful at making HIV acceptable, has lowered the national belief that funding for research, treatment, and social services is an imperative. Success stories work well when you’re trying to get people to get tested; tragedy brings in the dollars and cents.
Ultimately, the choices are never going to be easy. How can we, the HIV/AIDS community, say to those running the national agenda that their service has been appreciated, but we’re just not that into them? There will be those who will be disenfranchised, and feelings will be hurt, but we cannot forget our core purpose: providing adequate, competent, and consistent care for those who are most in need.
Blog by Marcus J. Hopkins, ADAP Advocacy Association member from Los Angeles, CA