Downsizing AIDS Care
Spirituality Column #27
I've been bluntly reminded in recent weeks that prevention is not the only issue pressing on us as HIV/AIDS continues to affect us all.
I spent much of last week sitting with a friend who was dying from the complications of AIDS. He had HIV- lymphoma, and fought hard for years, with aggressive chemotherapies and radiation treatments. He was fully engaged in life, within the physical limits of his battling body.
Now, once again, I stood with other friends by his bed as his breathing became shallow and slow. Although he didn't have the energy to respond with more than a sigh or a groan, he remained responsive through the very end.
Just before he died, his eyes opened wide, and he stared at something beyond us. As we told him how much we loved him, his eyes remained open when his heart beat and his breathing came to an end. The hospital staff joined us in crying as we closed his eyes and said goodbye.
I was saddened at how familiar I was with the scene, even though it has been over a year since I've attended someone's dying. I had been lulled into this feeling that I was somehow done with ministering to someone as they died. But here I was again, too accomplished at knowing what to say.
The reality is, my friend is but one of many people who are still being killed by the effects of HIV. Another friend with HIV committed suicide last month. He'd only been diagnosed with HIV 11 months, but he wrote that he couldn't face any more toxic treatments. And a beloved member of the Metropolitan Community Church of Los Angeles staff succumbed to the complications of AIDS this month. I have friends for whom the combination treatments of antivirals and protease inhibitors are not working anymore. Some of them have been taken off all HIV treatments, until they come up with a new generation of treatments, which will hopefully be soon.
Gabriel Rotello, controversial author of Sexual Ecology: AIDS and the Destiny of Gay Men, spoke at the Metropolitan Community Church of Los Angeles November 16. He reported that studies are showing that 50% of those who started on protease inhibitors when they first became available, are now developing resistance to these treatments. He also told us that epidemiologists are expecting a new surge of infections with drug resistant HIV, particularly among young men who have sex with men. Although many people are still doing very well on combination treatments, for many others, the current treatments will not prevent the complications of HIV which can kill.
This is grim news, and I'm hearing it from more and more people around the Metropolitan Community Churches and in HIV/AIDS service agencies. Could we be experiencing the beginning of a resurgence of sickness and dying from HIV?
Or is it just becoming apparent that it never really stopped? My AIDS ministry has always emphasized hope, even in the face of dying. With faith, this is one of the best gifts we can bring to those infected and affected by HIV and AIDS.
Things are shifting all over the HIV/AIDS world. But the enormous needs of persons living with HIV/AIDS are not lessening. Funding is being cut for many programs and ministries. Large numbers of staff people from many HIV/AIDS agencies are being laid off. Even my own denomination is cutting back on AIDS Ministry. There will no longer be a full-time staff person dedicated to AIDS Ministry here. The office is being emptied, and files stored or thrown. While I will continue writing here for The Body, my job as Director of AIDS Ministry for the Metropolitan Community Churches will end November 26, 1997.
I pray that people of faith will continue to bring hope where there seems to be hopelessness. I pray that provisions will be made for on-going pastoral care, and that the justice issues of HIV will continue to be addressed by many faiths. The Metropolitan Community Churches are in a unique position to lead the discussion on HIV prevention among gay men. I trust that discussion will continue.
I've been through over 15 years of living with AIDS now. I am so grateful and joyful to say that I am healthy today. But my concern for those who still suffer, for those who are not experiencing miracles, for those who may yet be infected, weighs heavily on my heart.
Even when feeling overwhelmed by the continuing challenges of HIV/AIDS ministry, I continue to believe that our faith provides us with every spiritual tool we need to face HIV, AIDS, or any other life-threatening condition.
After 10 years in this position, it is time for me to lay down the responsibilities of being the Director of AIDS Ministry for the Metropolitan Community Churches. But I cannot lay down my concern for, and passion about, the continuing issues of HIV/AIDS. Although I worry about the "down-sizing" that is happening all over, I have to trust that God will continue to provide. My hope rests in God, and in the good people who will continue to be God's instruments of hope, healing, comfort and love.