Being Alive; November 1997
Charlie Price

The article goes on to discuss how HIV/AIDS treatment had largely been "stumbling" from one crisis to the next as new treatments temporarily provided a "few months respite from a relentless demon." It is further described that AIDS funding has followed a similar pattern of trying to deal with emerging needs on a year-to-year basis, "but all the mechanisms are little more than a complex series of Band-Aids, not real solutions to the underlying problem. Everything has been created to address fundamental gaps in the American health care and welfare systems. How long can a seriously ill patient live on Band-Aids?" Is it realistic to expect that for the next 30 or more years we are going to go to congress to reauthorize Ryan White or ADAP? How much does it cost us financially and emotionally to have to fight for money every single year?

The author notes an additional threat to AIDS funding is the success that we have had in developing specific, compassionate and appropriate care for people with a life threatening illness. Other disease interest groups have taken notice and despite the merits of our arguments for AIDS specific care, they are challenging some of the aspects of AIDS funding-"Where are the Ryan White Care Act primary care programs for cancer? The ADAP funding for heart disease or multiple sclerosis?Sooner or later, we must accept the fact that it is not unfair for them to ask for equal treatment from government, whether or not their advocates are as well organized and persuasive as those for AIDS."

The article leads to the inevitable conclusion that the United States health care system needs to be reformed. We have spent too much time and energy getting the extra dollar each year. Shrinking funds all too often lead to infighting in the AIDS community over relatively small, but important amounts of money. We may end up fighting with other health interest groups over funds for services that all people with any life-threatening or other illness should reasonably expect. We need to join in with other interests to begin the struggle for health care reform. This may seem ridiculous given the resounding defeat of the Clinton reform plan only a few years ago, but it is the only way to go. We cannot fold our tents and go away when so many of our lives are at stake.

Such a change would not be painless. Many agencies and programs would either fold or be absorbed into mainstream care. Jobs will be lost. But that should not matter. We need to focus on the outcome which will ultimately be good for people with AIDS and for the American public. We need to focus on long-term strategies for what is becoming a long-term illness. "This time, we need to create solutions which can last a lifetime and which don't leave people with AIDS forever sitting on the fragile political limb of special, annually renewed programs and services."

Unfortunately, the original article ran without a byline. I would like to thank her or him for the thoughtful and forceful arguements made. I hope that as we think about the future that we keep some of the above perspectives in mind. Be well.

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