BRATTLEBORO — Imagine one of those winter nights when the snow squeaks underfoot because it is below zero. Five people gather in the moonlight.
On entering a small, rural farmhouse in a New England town, each person heads directly for the woodstove. Parkas, wool hats, and dripping boots are piled on a chair near the warmth.
This small group stands around a scarred oak kitchen table. Against the far wall, the hums of the woodstove occasionally disintegrate into small gasps of collapsing logs. Whole worlds seem to appear and disappear in the fire's center.
Each begins to place small plastic bottles in rows on the table. All the bottles are prescriptions removed from the rooms of those who had died of AIDS.
It is the winter of 1991. Eight years earlier, the HIV virus had been named by a French scientist as the cause of AIDS. Three years earlier, AZT (zidovudine or azidothymidine) was the first anti-HIV drug to be approved by the Food and Drug Administration. In the early months of 1991, DDL (didanosine), another drug, was approved for use in the U.S.A.
By 1991, 10 million people worldwide had been diagnosed with AIDS. Even in the United States, many of those infected did not have health coverage. Many had lost jobs because of their diagnosis. Many were afraid to apply for coverage and have their status revealed.
Thus, the midnight scene described above. All these five people wanted to do was prolong a friend's life until a cure was found.
At the time, there were only these two medications, and they weren't easy to obtain, so some people chose to be proactive. Waiting quietly for the Centers for Disease Control to catch up was just too painful.
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The medications of those who had died ended up on the farmhouse table: AZT, DDL, Bactrim, vitamins, antidepressants, sleeping pills, painkillers. All were there.
The antidepressants, pain killers, and sleeping pills were disposed of. This group of people hoped only to prolong the life of someone for as long as possible, not contribute to death through overdose.
In January 1991, in New York City, AIDS Coalition to Unleash Power (ACT UP), which described itself as “a diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis,” declared a “Day of Desperation” in the city, a gesture that highlighted that every day was desperate for those with HIV.
According to a chronology on the group's website, “At 5:07 p.m. Grand Central Station was the setting for a spectacular and massive act of civil disobedience as ACT UP took over the station. A banner announcing 'One AIDS Death Every Eight Minutes' was hung over the arrivals board. 263 people are later arrested as the group attempted to march to the United Nations.”
In February, “ten people, who had been charged with possession of needles with the intent to distribute them to IV drug users on the Lower East Side, are acquitted by a judge who agrees that the 'Necessity Defense' applies to their case. The judge rules that the activists' actions are justified by the need to try to save the lives of people vulnerable to HIV infection.”
In Vermont, on the winter night in question, the prescription drugs were soon divided into four paper bags, and they disappeared out the door.
This was how drugs got from the dead to the living in the early 1990s before the AIDS Medication Assistance Program (AMAP), which the Vermont Legislature enacted in 1997.
In 1991, not too many people believed in the effectiveness of available medications, but death was certain, and the medications might have meant months or years of life. If the drugs could help even a little bit, this band of “providers” would take the risk.
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It is now 2011. The journal HIV Positive, in a March article, “ADAP in Crisis,” describes the AIDS Drug Assistance Program (ADAP), the joint federal/state program that provides HIV medications for people living with HIV or AIDS today, as “an absolutely vital resource for more than 170,000 uninsured or underinsured people nationwide. It is a 'lifeline' in the most literal sense.”
In today's financial crisis, ADAP is in serious trouble. Some states have capped the number of enrollees they will accept and have put the rest on waiting lists. Vermont, so far, has no waiting list. But other states do.
So here we are again.The more things change, the more they stay the same.
“ADAP would not exist without the advocacy efforts of the HIV community,” the article concludes. “To survive the current crisis and continue on solid footing, it will take a renewal of advocacy efforts to the levels that existed in 1996.“
Thanks to the AIDS Project of Southern Vermont, we were there in the beginning. We need to be there today, and tomorrow, and until they find a cure.