AIDS and the Policies of Despair

My friend Brad was 37 when he lost his struggle with AIDS on March 13. A bright, sweet, gentle guy, he wanted to live as long as possible but was, in effect, forced by the government to agree to die in order to get the care he needed.

He had been half-blind, limping around his apartment on painful legs with the aid of a walker. He was hooked up much of the time to an IV that he pulled around with him. His gaunt body was shot through with lymphoma.

Still, he could talk on the telephone, have visitors, get out for a meal now and then. He had a surprisingly healthy appetite.

He enjoyed listening to opera on the radio, checking the seasonal progress of the garden, looking through his photo album, laughing about old times and even his illness. As sick as Brad was, he was alive. He was living.

Local AIDS organizations and friends were providing some support, but it wasn’t enough. Medi-Cal made it very clear: Brad was not eligible for the extended home health care and skilled nursing he needed until he gave up certain of the medicines that were keeping him alive.

That’s one of the many Catch-22 policies of Medi-Cal, the state insurance program that has recently run out of money, leaving hospitals, doctors, nursing homes and other care providers for the poor waiting to be paid.

Exhausted emotionally and physically, Brad finally gave in. He stopped the treatments Medi-Cal no longer wanted to pay for and immediately qualified for daily, round-the-clock home care. Home was where he wanted to be, and staying there saved the taxpayers the expense of a more costly hospital stay.

In a matter of days, he developed pneumonia. He went blind after a week or so, lost the use of his legs not long after, then suffered in pain for a couple of days until his morphine was adjusted to a higher level, which eventually rendered him disoriented. He was dead within weeks.

The government had one less case to deal with.

A reality of life is that it must end, sometimes much sooner than we expect. But living out our lives, however long fate allows, with a sense of dignity and self-respect seems a small and unselfish hope.

Because Acquired Immune Deficiency is such a monstrously complicated and debilitating syndrome, that small hope can be an elusive one. Governments, both state and federal, could be helping far more than they are. Often, their policies just add to the despair.

I’d learned that infuriating, disheartening lesson long before Brad fell ill.

In late 1985, my close friend Jon-Noel moved in with me, sharing the small house I rented near the beach in Santa Monica. Unable to shake Hepatitis B, he was broke, too weak to work or adequately care for himself.

His real problem was AIDS, as we would later learn, but it would be many months before he got that diagnosis. Until then, and even after, he suffered endless insensitivity and humiliation, much of it because of the policies of governments he had dutifully supported with his tax dollars.

At one point, when he was weak, thin and constantly coughing--and with documentation from doctors that he was ill--Jon-Noel applied for an extension of his state disability payments. When he was turned down, it was suggested to his face that he was malingering; he was told that he should return to work as a waiter. Eleven days later, hospitalized with pneumonia, he nearly died.

Finally, with a full AIDS diagnosis, he was awarded about $390 in monthly Social Security benefits. It was his sole income. In his early 30s, an aspiring and gifted writer, he accepted the notion that he would not live to see 40.

His dream became much simpler: to pay off some personal debts and live out his days with a modicum of self-sufficiency and dignity. But his repeated requests for supplemental Social Security income were denied.

The final rejection came three years ago in a form letter bearing the signature of President Reagan’s Social Security Administration director, Dorcas R. Hardy. It stated simply, “We do not consider you disabled at this time,” and suggested that Jon-Noel reapply in three months.

The letter arrived two weeks after he died.

It was the final insult from an inhumane system. My experience since, despite a change of administrations, indicates that government has not become significantly kinder or gentler. Similar stories from persons with AIDS are not rare, but tragically routine.

Far from over, the AIDS epidemic continues to spread, brinking on catastrophe in some Third World countries and wracking minority communities here at home. As it reaches groups that may believe they are not at risk, men and women, and particularly the young, will continue to be afflicted. Many will rely on the support of family and friends as they struggle for health and life.

Indeed, the remarkable sensitivity and generosity of a growing network of volunteers, both women and men, gay and non-gay, has been one of the touching and noteworthy aspects of the AIDS crisis.

It’s even possible that something positive might emerge from the global AIDS horror: an increased awareness about the profound need to overhaul our system of health care.

But AIDS is an unusually devastating disease, one that strikes many who may not have a safety net of financial, physical and emotional support. Even when they do, outside help is often needed. Caring for someone with AIDS at home can be costly, time-consuming and exhausting--particularly when the government response is so meager.

Political proclamations of compassion mean little to those who are suffering--except, perhaps, hope. Hope is all that many have. And hope isn’t enough.

I will never forget those words--”We do not consider you disabled at this time”--that arrived 10 days after Jon-Noel had been cremated and two days before his memorial service. Even now, those words mock him and the courage with which he faced his last and greatest life challenge. One wonders how many surviving mothers, fathers, friends and lovers have been similarly treated.

It isn’t fair, it isn’t right, it isn’t decent. Will it change?

We’ll see.