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We Are Now Standing on Shifting Sands

February 1998

Perhaps even more than ever before, people currently confronting legal conflicts as a result of their HIV or AIDS cannot afford to make assumptions about where they stand, or what their legal rights might be. In a sense, the disease used to be simpler, if more horrible. Now, it can be extremely dangerous to make decisions in a "vacuum." If we are to effectively protect ourselves, we have no choice but to take a hard look at the larger picture, try and get a sense of exactly where we are, and to understand how any of our individual legal issues fit within the larger picture.

New challenges abound, and that just isn't as easy as it used to be.

As the epidemic changes, so must our strategies for survival. Approaches to legal problems that might have been highly effective five years ago, or even a few months past, may no longer pack the same punch they once did. To a certain extent we all now find ourselves on a new playing field. Many of the challenges raised by the disease remain the same, but continuing shifts in the demographics of the disease, and the changes resulting from protease and other treatment advances, have raised a series of new challenges that are once again pushing us to our l questions have arisen posing new challenges, and defying simple solutions. As it has since the beginning, the virus continues to mutate according to its own unknown rules, never resting, and dragging the rest of us along with it into uncharted waters.

In matters of public health perception is often as important as reality, and the disease has quietly but surely made an important shift in public perception from a terminal illness to a chronic one. As a result of substantial media hype, the unfortunate idea has been widely cultivated that the disease is no longer a problem, that "the AIDS crisis is over." Already, the idea has led to diminished funding and enthusiasm for AIDS issues, had disastrous effects on disease prevention in affected communities, and begun to find reflection in a new aggressiveness on the part of private disability insurers, and even (more subtly, at least as of yet) in the Social Security Administration. As always, we are dealing with an epidemic in flux, and we close our eyes to these changes at our own peril.

Indeed, we have as of this point only just begun to deal with the shock waves of the changes we've already experienced. HIV is still very much a game of survival, but if anything its rules have become a bit more complicated. Successfully meeting the challenges before us will require new flexibility. Our perspective is different, now geared toward the long-term despite our expectations, and a host of new challenges are being raised constantly.

As if the disease itself were not complicated enough, relevant laws keep changing, on a federal and state level.

Mostly, that's good news, but the cost can still be high if you fail to understand how these new laws work, and how they might affect you. It has never been easy living with HIV disease, but the wave of change catching us all up in its wake makes it truly difficult to assess our footing and make the best decisions open to us.

Are you ready? Let's take a "snapshot" look at where we stand in today's' HIV epidemic, and explore some basic legal strategies for survival. To paraphrase the actress Bette Davis in a moment of high drama in one of her films, "Fasten your seatbelts. It's going to be a bumpy ride!"

Arm Yourself with Information

We live in exciting times, but also in a time in which key questions abound and answers are few. Yes, many (but not all, and never forget that) have gotten a boost from the protease inhibitors and other treatments, but a crucial question remains: will it last over the long term? We can only hope and pray so, but ultimately we simply cannot know. And, if the protease drugs do lose their efficacy, will any of the other drugs or potential treatments now in the pipeline step up to fill the void? Again, your guess is as good as mine.

Here's the point: at a time in which so many important questions cannot now be answered, it becomes crucial to answer as many questions as possible before taking any important actions. As always, you will best protect yourself if you've kept your eyes open, carefully looked around you, and done your best to arm yourself with all available information before leaping into any course of action. For example, an area of key concern has become the idea of going back to work. That the issue exists at all is wonderful, and good possibilities abound, but a number of devastating pitfalls also await if you move too quickly. Things are rarely as simple as they seem to be.

In this area, especially, it becomes key to distinguish between which questions can and cannot be answered, and to do your best to find the answers to those you can. If you have a private disability policy, read it. If you're getting benefits, understand how and why. Before making any decisions about going back to work or not, orient yourself to understanding your network of benefits. And look deeper, asking yourself "Which of the possible moves open to me will best serve me in the long run? How can I best protect myself?" These questions are important, because you're worth it.

Consider the following in analyzing your benefits, figuring out the sources of your "lifelines":

  • Sources of Income. First, ask yourself "Where is my money/ financial support coming from? Pension/ Private Disability; SSDI, SSI, AFDC, Housing Support?

  • Sources of Health Care Coverage. Then, equally importantly, analyze the source of your health care. Private Coverage, COBRA continuation coverage, Medicare, Medicaid?

Paranoia is not necessary, but education is. Before taking any action that will "rock your boat" and potentially affect the sources of your income and health insurance coverage, you must take the time to understand your place in the system. You may have more freedom to try a change "on for size" than you think (through various work incentive programs such as the trial work period through Social Security, etc.), but you still cannot afford to make assumptions in this area.

Before making any important change, ask:

    How would this action affect each of my benefits?

If you need help from a case manager or other expert in analyzing this question, then by all means get it. But don't take the first step until you understand at least the basics of where you're starting from. No map is available, and unfortunately someone forgot to give us the instruction manual that was supposed to come along with this disease. So do your best anyway. Be your own advocate.

I'll say it again: you're worth it.

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This article was provided by Paul Hampton Crockett, Esq.. It is a part of the publication A Snapshot of an Epidemic in Flux: A Survey of Effective Legal Strategies for Survival in Changing Times.