In a new report issued in August of 1999, the CDC raised concerns that the decline in death rates may be leveling off. The figures cited were that while the death rate declined 42% from 1996 to 1997, the decline from 1997 to 1998 was only 20%. While there is general agreement that things may be changing, there was a great deal of misunderstanding about the CDC figures. News writers and commentators seemed to assume that a stable level of improvement would require the reduction in the death rate to stay the same from year to year. This is simply bad mathematics, however. The only way the reduction in death rates could remain constant from year to year would be if each year brought an improvement in therapy over the previous year -- in other words, continually improving therapy. Obviously this is not the case, as the major improvement in therapy happened in a single year -- 1996 -- and there have been only marginal changes since then. Until another major improvement in therapy occurs, the decline in the death rate can only go down with each passing year. That's simply the way the math works.
Despite the popular misunderstanding of these figures, it is still true that many people are dying from AIDS today. A significant number of people who "came back from the brink" in response to the new therapies a few years ago have now developed drug resistance or unacceptable side effects and are succumbing to the disease. The number of obituaries due to AIDS reported in community newspapers seems to have increased, and memorials are once again a fairly regular weekend event.
Another indicator of change is the number of people entering hospitals with serious opportunistic infections (OIs). Many medical practices in major cities report that the number of OIs is once again on the rise after having declined for two or more years.
A related indicator is the number of people signing up to enter studies of drugs for opportunistic infections. For nearly two years, the incidence of new CMV infection was so low that studies of anti-CMV drugs were greatly delayed. Today, that seems reversed again with study sites for CMV, MAC and other major infections reporting renewed enrollment.
As Project Inform and others have cautioned all along, the new therapies of 1996 were no cure and surely had their limitations. If anything, they have worked better and longer than many of us would have predicted. But we must all recognize that at most people have experienced a brief respite, not a cure.
The availability of today's therapies, as well as the current dynamics of the epidemic, make it unlikely the US will ever again see the catastrophic death rates experienced in the late 1980s and early 1990s. But it seems increasingly unlikely that major infections and death can be held off forever. Moreover, many of the communities more recently ravaged by HIV infection are just beginning to move into the critical time period when death rates begin to rise.
What's needed -- another breakthrough with new classes of drugs unaffected by resistance and failure of previous therapies -- will require the committed voices and demands of people living with HIV/AIDS. For now, no such breakthrough is on the horizon although several new drugs, a few with different mechanisms of suppressing HIV replication, are in early stages of studies.
The best hope for the immediate future is for people to recommit to their strategies and make the best and longest possible use of the effectiveness of any therapies that are still working for them. Adherence is more critical than ever. Along with this must come rapid research into better strategies for using the treatments we already have.
We must recommit to the battles for better treatment and focused research that brought us the advances in the first place. Most importantly, we must help the public and the government recognize that AIDS is definitely "not over," and that it may even be getting a second wind.