Come Out, Come Out, Wherever You Are

I am unsure of how this entry is going to unfold because I feel that my “Rounds” entry has laid some foundation and so I would like to build upon it. It is my hope that you will start to understand not only why the history of HIV matters, but more importantly, what will happen to HIV services in America, if we do not start repeating some of that history. The history to which I refer involves us once again standing up and demanding what we need to get this pandemic under control, because after 25 years of this plague, our government still flat funds HIV services, even as infection rates climb. But to really understand our future you need some perspective of our past.

From the first discovery of HIV (called GRID) there has been a battle being waged that pits the needs of the HIV community against the forces of a free market. Federal funding for prevention began in 1985 and has continued to evolve into the Ryan White Care Act that today encompasses the majority of money for treatment, housing and services for pozzies in America. Most of the money for HIV research comes through the National Institutes of Health (NIH), which includes the CDC and believe it or not, the lions share of research dollars come from the pharmaceutical companies.

For 25 years the HIV community has been forced to “chase the dollar” if you will and right now we are losing that race. Rather than having federal programs that truly reflect the needs of the local HIV community, we have a patchwork system where Washington guesses at who needs what, where and when. All of these systems have been designed during some very cold presidential terms. Reagan took five years to utter the word “AIDS” while letting us twist in the wind and actually groveling for the miserly federal funds that were available.

George the first was no better with funding levels staying rather stagnant. Things got a little better in the Clinton years, but nothing to even begin to meet the needs of our community. I believe the lack of “unfettered” federal funding is the single most dangerous threat that we still face and I do not have a clue on how to change it. It is a cold hard fact that HIV funding is at the mercy of Congress and Republicans have proven to be very cold masters.

When the first ASOs started we got money from whatever source we could and our clothes closets, food pantries and drug services existed on the donations of those who had passed on. What little we had we funneled into the areas or neighborhoods where we felt they would do the most good. Information sharing was started by organizations like Positively Aware, GMHC and even our own POZ magazine and their monthly missives were devoured and disseminated throughout the community, because we were so hunger for information. Remember, there was no Internet back in the early days.

ASOs expanded as more money became available and by the early 90s there was major money to be made in treating the HIV community, whether through services, treatment and of course, drugs. Government funding would continue to increase, but was outstripped by both our existing needs and the skyrocketing infection rates. By the mid-90s, or the era of the Protease Inhibitors, it appeared that salvation was at hand (or at least a reprieve) but that salvation came with a horrible cost. The advent of PIs would save the lives of countless pozzies and in doing so, we almost broke the bank because the cost to develop those drugs included the cost of developing those that did not succeed and at some point, we needed to start paying our tab.

So more money was added to pay for anti-HIV drugs, but more of those funds were being used to purchase drugs as drug prices were increasing in double-digit percentages. Unfortunately it seems that our free market system creates a paradox in regards to our drug industry. The cost of drug development is mainly borne by the drug industry and the cost of bringing a drug to market can exceed $500 million easy. However, the drugs that reach the market are only part of the equation, because you still have to pay the development costs for the drugs that die in the pipeline.

Let us assume a company funds 10 new drugs over three years at a combined cost of $5 billion but only 3 of them come to market. Even if those three drugs made, say $750 million each over three years that is only $2.25 billion, so where do you think the other $2.75 billion will come from? We cannot deny the companies their development costs, because without them there would be no new drugs in the pipeline. All of this becomes even more skewed when you factor in the role that drug companies have played over the years.

It is a fact that most drug manufacturers spend more on MARKETING AND ADVERTISING THAN DRUG RESEARCH. Yes you read that right, they spend billions each year plying doctors to prescribe their drugs and deluging the public with advertising that does nothing to promote responsible use of the medical system. Somehow we need to take the profit out of drug development, so that all the billions wasted on marketing and advertising can be used instead to lower the price of drugs. The drug industry maintains a monopoly on pharmaceuticals and the horror of that power was unleashed a few years ago when the price of Norvir was increased by 400%. The increase in that one drug alone caused serious complications in ADAPs across the nation, as Norvir is very popular (as a drug booster) and since so many people on ADAP us the drug, the ADAPs costs skyrocketed. The system is broken and we need to work at fixing it.

As the scramble for HIV dollars increases, drug manufacturers are falling all over themselves bringing new classes and drugs to market, and who can blame them when the federal government and private insurance pay the lions share of drug costs. We still need to step back and ask again: At what cost? Sure we need options and I am not suggesting that new drugs are bad, my fear is on how we cover the cost. New drugs will force ADAPs to expand formularies that are already beyond the breaking point, because the funding for the ADAP program has actually decreased in the past six years.

Still, the money must come from somewhere and so it does; it is shifted from other HIV treatments and services. Our ASOs have to decide on whether to medicate someone, assuming they can assure them transportation to manage their health. But we just cut the services portion of our Ryan White so while we can get you the medical and drug coverage you might need, you are on your own in obtaining the actual services. What do you propose that we tell those who need these services? Sorry, your life just costs too much, now be a good fellow and crawl off to die??? Well that is exactly what we are doing when we can only address a portion of the needs of our clients. You cannot stay alive with partial medical, physical and emotional care. Society’s indifference sends a very powerful message to many pozzies and the message is clear: we do not value you enough as human beings to insure you receive the basic services that you need to survive.

I believe that to some extent, the HIV Community is responsible for the situation that we find ourselves in, because far too many poz people just do not care about the HIV Community. I read the comments in the press, on the forums and even hear it from other pozzies who have no desire to ensure that we keep these programs and services that we fought so hard to obtain. I cannot emphasis enough that a hard reality about government entitlement programs is that ONCE YOU LOOSE THEM IT IS ALMOST IMPOSSIBLE TO GET THEM BACK. You may have health insurance today, but what about next year or ten years from now? Be careful or your indifference could come back to haunt you. The agency or program that you do not care about today, may well be the one thing you need in the future and what will you do if it no longer exists?

Level government funding of HIV services over the past six years, has remained flat and when compared with the increase in infection rates, we actually have less money to treat more people. We cannot continue and how many more deaths must we tolerate as people die from HIV infection because the money to treat them, is just not there.

This is where all of you come in and I urge you to get involved in your local areas, because HIV treatment should be determined locally, but they will not know what we want and need if we do not tell them. HIV Planning Councils are begging for poz representatives as most of us long-termers are aging and we took our turn and now it is time for someone else to take theirs. You cannot fault a system for failing to serve its clients, if those clients will not provide input on their own needs. Planning Councils are there to solicit ideas from the HIV community and then tailor their services, where possible, to provide those treatments or services.

So many of us, myself included, have benefited greatly from the work of the earliest activists, even when they initially achieved very little, because they had defined how to fight the war. They tried and if they failed, they re-evaluated their strategy and would try again realizing that only the HIV community could fight to ensure our access to the resources of the government. You would think that things have changed, but they have not.

The new Medicare Part D (prescription drugs) was implemented with little regard for those with catastrophic drug costs and Stephens’ drug co-pays (with government insurance no less) went from $1,200 in 2005 to $5,500 in 2006. Based on his income, just his drug co-pays consumed 18% of his income last year and for people on a fixed income these co-pays are killing them. And unless you are in the AIDS Insurance Continuation Program (AICP) you are on your own covering your co-pays, because Ryan White has no money to pay them and federal law prohibits the ADAP program from paying any drug co-pays.

For many of the newly infected, these issues seem unimportant when given the impact of just dealing with your HIV infection. Many of you are healthy and have private health insurance, unfortunately you cannot take any of that for granted and you need look no further than the forums to see dozens of people that have been both physically and financially devastated by their HIV infection. So many of these people live at the whim of government programs and when the money runs out… treatment stops… and people die.

We are entering a new age of HIV in terms of what we know and how we treat the illness, all of which costs billions of dollars each year. As we advance, our costs are exploding and the time to plan for paying for that is now, not after some programs have been allowed to expire, because nobody spoke up in support of those programs. Whether you like it or not you are part of a community that has been forced to claw and scrape our way for every dollar we get and the sooner that you accept that fact, the sooner you can get up and do something about it.

I am not asking you to do this for me, because I can take care of myself, but many of our community cannot and therefore we have a duty to advocate on their behalf. As we enter the 21st Century, we need to rethink HIV treatment and services before the beast decimates the world economy. There are tens of millions of people with HIV and that is not going to change for a very long time, so you have a choice to make.

Do you want to be part of the problem or part of the solution? I can tell you why I do it, but what matters is finding that fire in yourself and believe me when I tell you that if you choose to get involved, you will never regret it. To me there is nothing sadder than just not caring about our community, as we occupy a very different niche with our HIV. Knowledge is power and unless the new AIDS Advocates step forward to resume the march, at some point our forward momentum will be lost.

So please, AIDS Advocates: Come out, come out, wherever you are and join our ranks. Find a passion and pour yourself into it. None of us can do this alone and for millions, they need someone to advocate on their behalf, because if we do not do this for our own, then who will?