"Your mission," my doctor told me after my AIDS diagnosis in 1984, "is to stay alive long enough for us to find a way to make the virus manageable, to make it stop destroying the immune system." And I have lived to see that day. Many of us have lived to see that day. Triple combination therapies are working to bring HIV under control, allowing the immune system to restore to near normal levels.
On the other hand, people are still dying, and only 10% of the persons infected with HIV around the world will benefit from these advances, primarily because of economic inequities. Most people with HIV in the world will not be able to access the drugs that can make the infection "chronic and manageable" because they, or their government, will not be able to afford the $15 - 30,000 a year it will cost, in drugs alone, to keep each person with HIV alive. It bears repeating: only 10% of the people infected with HIV in the world will be able to be treated for HIV infection. For the other 90%, the infection will still rapidly progress to AIDS and death. Most of the people with HIV in the world live in countries where aspirin is hard to access, let alone crixivan.
HIV further illuminates all the justice issues of our globe: the widening gulf between the "have's" and "have not's" between rich and poor, between developed and developing countries, between men and women.
For me, this conference could have been called, "Global HIV: Hope and Injustice." There are concrete reasons to have hope, and there are real reasons to be angry. There was genuinely good news, finally! And there was too much bad news, still.
On the good news side, researchers announced the resounding success of triple drug "cocktails", combining two antivirals and a protease inhibitor (PI). In 90% of patients tested over six months, viral load has dropped to undetectable levels, and CD4 counts have risen to normal levels. This means that if you take these drugs with great discipline and compliance, you can live with HIV in your body for many, many years with no destruction of the immune system. It was noted again and again, that these are preliminary results, and long term effectiveness has not been established.
My eyes overflowed with tears as I realized that for many sisters and brothers, we are actually, really, honestly going to live normal life spans. I even heard Larry Kramer on the news speak optimistically about HIV for the first time.
And there are countries where HIV education and prevention is working. In countries where frank sex education is allowed, the rate of transmission and the percentage of adults who are infected are as low as in Denmark, with 0.1% of its adult population living with HIV, contrasted with Uganda, where 50% of all adults live and die with HIV. Thailand, Pakistan, Australia and Brazil were all cited as countries where successful risk reduction education has happened, and rates are actually declining in some populations in those countries.
On the flip side, the inaccessibility of treatments is just one injustice. In most of the world, HIV is a "family disease," and there are increasing hoards of uninfected orphaned children, who have lost not only their parents, but all their brothers and sisters. There are few, if any, provisions for these orphans, and they suffer the stigma of being known as "AIDS orphans." Not enough is being done to help them.
In Zambia, one out of five women are infected with HIV before they reach the age of 20. Girls leave their birth families at puberty, and "sugar daddies" adopt them, give them HIV, then throw them out, blaming them for bringing HIV into the house. It can take 3 days to see a doctor, if you live where there are doctors. The woman who gave this particular report thanked the conference for the scholarship which brought her to Vancouver, but demonstrated the economic inequities of this world by pointing out that the registration (around $1,000) would pay her rent for three years, and the plane fare (one can only guess how much that was) would feed her five children into adulthood.
A man from India told me that the government there is not motivated to do prevention education, because they see HIV as the answer to their population problem. Indeed, the country with the most persons with HIV in the world today is India. And even efforts that have been made have had little impact, because Indian men consider homosex to be "mischief" rather than sex, so why should they worry about STD's like HIV? Sexual activity with men is not sex. So how could someone get a sexually transmitted disease? And why would their wives or children be at risk from their "mischief"
Several speakers addressed the urgent need to empower women to control their own bodies, to be able to protect themselves from HIV and other STD's. We were told that the technology will be in place by the year 2,000 for women to be able to protect themselves without their partner's knowledge, and still allow for conception, by using microbicides. The female condom is already available in many areas, of course. Indeed, the "Reality Condom" booth was a very popular exhibit at the conference.
The female condom can also be used by gay men to protect ourselves during anal intercourse, although the FDA will not allow the testing necessary to license it for that use, or even to issue instructions. I asked the exhibitor about this, and she said the FDA wouldn't allow them to do testing for use in anal sex, and then she reached under the table and handed me a booklet with fully illustrated instructions.
The U.S. came under fire for a number of injustices that our government perpetrates. For example, numerous speakers read a litany of some of the countries who will not allow HIV positive travelers to enter their borders: Russia, Iran, Iraq, Saudi Arabia, and the United States. It was chilling to hear my country included with the others who have restrictive immigration laws.
The U.S. was also repeatedly chastised for our failures in HIV prevention efforts. It has been clearly demonstrated in countries like Pakistan, Thailand, Australia, and Brazil that regular, blunt and frank education on reducing risk in sexual activity reduces STD and HIV transmission rates. Furthermore, there is now proof that needle exchange programs work in dramatically reducing transmission rates, with no increase in drug use. But the U.S. government continues to deny the reality of these studies, and so our transmission rate continues to climb.
It's clear that we've turned a corner in treating HIV, and yet there are so many who didn't live to see it happen. I have to qualify every shred of hope now with the reality of the justice issues, the access issues, and the grief issues. I can't get away from it after being at this conference. At the same time that I was crying with joy because I lived to hear the announcement I prayed for, I cried with grief for Fitz, and John, and George, and Nancy, and Linda, and Herbert, and Ron, and on and on, because they didn't.
As if to remind me that we cannot be complacent with the good news, I got back just in time for the deaths of three important people in my life. One of them was Connie Norman, who died July 14. She was a transgendered AIDS diva/warrior, with an angry column ("Tribal Writes") in a popular gay paper in Southern California (Update), and an angry radio talk show. She was a leader of ACT UP LA, and was involved in most everything that went down politically around AIDS in LA since the beginning. I remember being on some commissions with her back in the mid-80's, and being quite in awe. She always had a kind of contempt for me... I just wasn't angry enough.
Then she came live at the hospice, and I became her chaplain. She began to see my function in life, and she helped me to understand the importance of my own rage about AIDS.
When she died right after the AIDS Conference, it was almost as if there was a transfer of anger from her to me, that I hope I can use positively. I've heard the news I've been waiting to hear for years, and it doesn't bring back all the people this virus has already murdered. It sure didn't do Connie any good. These new advances do not correct the human rights violations that are being perpetrated against women, and the poor, and the sick. The new drug cocktails won't save the lives of more than 1 in 10 of those who have the virus. They don't empower women to control their bodies and their lives. They don't prevent pharmaceutical bureaucrats from making huge fortunes by saving the lives of the rich, and damning whole families of poor people to death.
Yes, it's become chronic and manageable for those of us privileged enough to be in the top ten percentile (and there are plenty of folks with HIV in the U.S. who will not be in that top percentile) but what good does it do when it is still spreading like wildfire, and it will still kill 90% of the people it infects? We've got to eradicate the virus, or it will continue to mow down the population by millions.
So what do we do? We take action. Hopelessness feeds on helplessness. Hope comes alive when we start doing something. And we must live with hope as we work for justice. We will create hope for ourselves and for all those affected and infected when we take the actions necessary to bring justice to this pandemic.
Every person of faith is called to address justice issues. As Christians, Jesus clearly calls us to demand justice. Demand a repeal to the restrictive immigration laws in the U.S. and other countries. Demand that governments worldwide empower women to control their own STD prevention. Demand that governments worldwide heavily tax the pharmaceutical companies on their profits, to begin to pay for drug access in poor countries. Demand that your government support and fund more effective prevention education. We must continue to educate and to motivate everyone we can to protect themselves from further infections. We must continue to care for the sick and dying.
If you're at risk for HIV, get tested. It can be treated now.
If you're infected, follow your doctor's orders religiously! Your success with these drugs has a direct relationship with how well you follow the instructions on the bottle.
Thank God we've found a way to control HIV. At last, we have really good news from the medical world.
At the same time, we cannot forget that HIV/AIDS throws a spotlight on all the injustices of this world. For 9 out of 10 persons with HIV in the world, being infected with HIV still has a pretty hopeless outlook.
And that's why we have to take action. That's where we'll find hope. That's where we'll find God.