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AIDS – SOMETHING IS BEING DONE, BUT IS IT ENOUGH?
An Off-the-Cuff Interview with Nancy Sims
Interview by Janice Stensrude
published in Uptown Express April 1989
AIDS is making the public recognize that there are serious gaps in our public service programs. For example, if you are diagnosed with AIDS, it takes two years to get under disability on government programs. There are those who will survive AIDS for two years, but there is no one who will survive not eating for two years. With AIDS, you need good nutrition and special diet programs. You're not going to get it because for two years you're going to be broke while the bureaucrats are processing paperwork. The legislature is evaluating right now if they can provide a waiver for AIDS patients to get processed more quickly.
It's a slow process. Lots of people have been experiencing it for years and years, but AIDS immediately debilitates you. It's really being brought home to the younger population who are paying the bills and who complain about people on welfare. We are watching our own peer group pass away. Hopefully it will make us address the system.
The City of Houston Housing Authority and the Harris County Housing Authority are responsible for people who can't pay rent, but their waiting lists are over two years–and you have to qualify for welfare, another two-year process, before you can even apply for that waiting list. These people with AIDS are immediately homeless.
Government is evaluating and trying to figure out how to respond. The thing to remember about AIDS and government is not to be critical of government unless you have a better idea, and if you have a better idea and you come to me and I'm the mayor, I'm going to say "OK, that's a great idea. I agree. I think we should build a whole Allen Parkway Village for people with AIDS. Do you have any idea how we could pay for it?" And you are two things: (1) you are a person concerned with AIDS, but (2) you are also a tax-paying citizen, and you're going to say sure, let's raise taxes?!!
Something Houstonians and all Texans have finally come to realize over the last five years is that government really is an essential part of our lives. Our tax base has been debilitated by the economy, and if we want the garbage picked up, we at some point are going to have to pay for it. It's against a state constitutional amendment to have debt, so the state can't go into debt, but they still have to build prisons, education people, and they have to provide money for AIDS, which is something that was never in the budget. I'm not advocating a tax increase, but I am advocating that people be patient and try to come up with solutions.
Prior to the AIDS Panel there was a mixed understanding about what governmental entity was responsible for what. The same people who deal with prevention are not the same people who treat you when you're sick. The County and City Health Departments are responsible for preventive health care, with the County handling areas outside the city limits; the Hospital District is responsible for delivery of indigent health care. It's the governmental structure in Texas. It's old and it's antiquated. In my opinion, it should be one public health concern. The City can say it's not their problem you can't get in the hospital because they don't run the hospitals.
Basically, the job of the clinics is to inoculate and give prenatal and postnatal care. The City does family planning; the County doesn't. Your health departments are the people who inspect your restaurants to be sure they're clean and inspect sewers. The same people, the same department is responsible for the measles epidemic. They do a million things.
Then, there's a separate entity, the Hospital District, with their own tax, and they provide the hospital care. It costs money to educate people about AIDS to prevent it, and it costs money to care for them when they've got it. Just caring for people with AIDS and nobody else, the Hospital District will go broke by 1992 at the current tax rate. Jeff Davis delivers the first or second largest number of babies of any hospital in the country each year. With AIDS that is basically going to cause a significant tax increase unless we can figure out how to address it.
One thing about our health system that's really weak is that it has no way to address median health concerns. We teach prevention and we provide the care once you're deathly ill, but there is no middle of the road, like treatment programs. We don't have enough of them, and what we do have is totally inadequate. I read in the paper that the Shoulder is going under because it doesn't have funding, and it's one of the best drug treatment programs in the city.
I think that the federal government has to play a big role. In the last 8 to 10 years everything has been dumped on the local governments. Houston is addressing AIDS one way and New York is doing it another way and California is doing it another way. Some communities have money to address it and others have none. The federal government is another solution area. The public has to demand action. We taxpayers, we citizens, we people who have never voted have to write our congressmen, we have to pay attention to what government is doing about it. It is a war. We have to be compassionate about the people who get it, but we have to try and stop people from getting it in the first place. We have to support alternative health care ideas. We have to evaluate everything that's put before us, but we can't wait for it to be put before us. Health care is one of the main reasons we have to have government. I think people need to demand that the federal government take a stronger more active role. Bush and Dukakis both addressed AIDS in a very small way in their campaigns, which we all thought was such a victory that it was mentioned at all. In fact, it should have been one of their major issues.
Corporate America, High Society and Archie Bunker – How Do We Reach Them?
I think that local government and community leaders understand that AIDS is a problem for everyone, but it's a long way from general public acceptance. I think that citizens have been educated on transmission modes and now we're going through a period where they're more condemning than they were before. Now they know that the most likely way you can get it is through a period where they're more condemning than they were before. Now they know that the most likely way you can get it is through sexual transmission or dirty needles – so you're a drug addict or you're gay or you're some lifestyle that pretty little Christian people don't get. So I'm not sure if we've made inroads on the social level.
It's callous to use the economics of it as a reason for people to work more and pay more attention, but I think it's the only way to reach many people. They have to understand that it doesn't matter who gets AIDS. It doesn't matter whether they got it through the right way or the wrong way, something you agree with or don't agree with. They're going to die and you're going to pay the bills. That's just all there is to it. It's callous, but it's a fact. So many people will not care until it affects their pocket books. When the public begins to realize what AIDS is going to do to the tax base, not only here but nationwide, then they'll really go bananas. I may be feeling great compassion for people with AIDS, but if the only way I can get the president of the corporation to pay attention is to be callous about it, then that's what I'm going to do. When you're fighting the war in corporate America, people don't want to know you're compassionate.
It's a plague, and it's killing our young people. It's attacking a natural resource that we can't do without. It's taking vital young people who have careers, who are affluent, who are good tax-paying citizens. It wipes them out financially and then it kills them. That's tragic. It's tragic because of the gifts the lives had to give. That's why we have to pay attention. I heard a businessman once explain it to some of his peers by saying "Not only did my employee come down with AIDS, but that employee was on the corporate track. He was climbing the ladder. He was one of our main producers. I lost him; I lost his generating income; I lost his productivity in the business." Employers have to educate. They can't walk around with blinders on and pretend that AIDS isn't going to hit their company. The Chamber has "AIDS in the Workplace" programs on how to deal with AIDS, how to deal with people in your business who have AIDS, how you cannot discriminate. We're trying desperately to get nondiscrimination passed through the legislature.
If you fire them, you're going to pay for them anyway. This is what I don't understand. Business can work with them – hopefully help them live longer. If they fire them, they just send them over to the Hospital District, which is going to raise their taxes. It's simple to me. You fire the guy, he's going to become totally indigent.
Some companies are already doing a lot and others are now beginning to take a look at what they can do. IBM has set up a model that's being used nationwide. HL&P and Southwestern Bell have been commended for their programs, too. I think business does want to deal with it; they don't know how. That's the job of people like the Chamber to teach them how, and programs like United Way can show them where to put the money.
Insurance companies are having a real problem with this disease, too. They're losing lots of money. A young population is being hit that usually uses very little insurance except for maternity. They have to come up with a solution. I don't know what to tell them. I understand their job. Business is working on that, too. Many companies are self insured.
The Statistics – How Big Is the Problem?
In Houston we have the fourth largest number of cases, and we have just now begun to do some studies which involve anonymously taking blood samples from people in the City and County health clinics, people in the TB clinic at the VA hospital, and babies born at Jeff Davis. There is no identification of where the blood came from. The statistics on Jeff Davis babies showed something like 2 in every 1,000 are HIV positive. And if that's true that would mean there are 2 more HIV positive people for every baby. The mother transmitted it to the baby, and the mother got it from someone. So multiply that 2 in 1,000 by 2 more. Those people may not even know they have AIDS. They may still be continuing the lifestyle that caused them to get it in the first place, and they're spreading the disease.
The babies are one of the best ways to identify the change in the AIDS population. In Houston it has been predominantly in the gay community. There are still ocurrences of AIDS related to blood transfusions, but it is only people who received a transfusion prior to 1985 when we began to screen the blood for AIDS. Now when we donate blood, we have to sign a release saying that our blood will be tested for AIDS. They do a test before they give the blood out.
In Newark, New Jersey something like 80% of their AIDS cases are among heterosexuals because of their drug-user population. New York City has gone to 60% or so; California is now beginning to change. Houston is a little slower on that change. We can't say that's because it's not out there. We don't know because we don't have any public treatment facilities. If a heroin addict is found dead, we aren't testing him to see if he also might have been HIV positive. We don't have public methadone clinics; we don't have anything where people who want to get off drugs can go. That's how they're finding them in Newark and New York. In Houston we've gone from 99% gay to more and more pediatric cases and more heterosexual, but we really don't know to what extent.
The War Against AIDS, the War Against Drugs – a Parallel Fight
Houston is just now beginning to address its drug problem. We have private drug programs, but we don't have indigent drug programs. At Ben Taub it's full and there's a waiting list. There are groups who are beginning to focus solely on AIDS among the drug-user population, and they're fighting a dual war. They are demanding people pay attention to the drug users and the lack of programs for them and battling AIDS at the same time. Their challenge is phenomenal, and we as a community have got to pay attention to it. Over The Hill, Inc. is a group who used to deal with ex-cons and helping them readjust into the community. They now do that plus battle drugs and battle AIDS. Their AIDS programs are among the most progressive.
We don't know how to reach the drug users; we don't know how to educate them. How do you get out and teach people who are using drugs that don't watch TV, don't listen to the radio, and don't read newspapers? How do you get out there to tell them not to share needles? And what do you do about it? Do you give them needles? Or do you find programs so they can get off drugs? Either way you're going to spend tons of money.
What's amazing to me is that I've been seeing the Houston media begin to deal with drugs. I don't see how they can mention one word without the other. To me it's like bread and butter. Drugs and AIDS are one and the same now, yet there's still some hesitancy to talk about AIDS.
The bottom line is they've got to talk about sex. I've seen these reports on the news stations showing the guy on crack. He came from a good home, and they're interviewing this guy stoned out of his head. Why don't they just talk to him and then they can talk about how he's a perfect candidate for AIDS and they can tell the viewers "Don't sleep with him!" To me it is no longer one or the other. AIDS and drugs are a totally merged issue.
The drug community is where it's spreading the fastest. Street kids and drug users are going to be spreading it quicker than the gay community has. The gay community has kept it basically in the gay community. It's devastated that one little community. Everybody now knows somebody who's been affected by AIDS or else they know somebody who knows somebody.
The gay community taught themselves how to be self-supportive. It is a cohesive community that has fought many battles together, so there is actually a community structure: the organization is in place. When the AIDS epidemic came and it began to be recognized as a gay problem, people in the gay community responded. They've educated themselves. The bar owners got involved. Places where gays go were active in educating people on how to protect themselves. There isn't a drug-using community. You're talking about people who are involved in a different type of program. The gay community is going to have to reach out and help those people and the community as a whole. We now have educators involved, and the medical community is involved. All of these people are going to have to work together to figure out some approach, because the drug community is not going to teach themselves about AIDS because there isn't a drug community.
Someone pointed out to me that drugs have really been a big problem in this country since the early 60s and it's taken 20 years for people to pay attention. Is it going to be 20 years before people pay attention to AIDS? How many people have drugs killed before we got around to recognizing it as society's problem? Since they're already fighting the war, they should be able to merge the efforts.
Nice People Don't Get AIDS?
It's going to be very important over the next two or three years for people who have been providing community-based services to AIDS to open their minds and open their hearts to the changing AIDS population. The face is going to change. The face is going to go from the affluent white male who fell on hard times to someone who has never been affluent, to someone whose body is extremely abused who may be suffering from AIDS as one of many maladies, who may have been a prostitute. It's going to be more representative of society. It's going to be everything from affluent people to poor people to plain old middle-of-the-road people. It's going to be anybody who participates in unsafe sex practices.
Our younger generation with its sexual freedom hasn't experienced the caution that was common years ago when the fear was unwanted pregnancy and the common venereal diseases. But now, we have got to realize that for every person we're sleeping with, both of us are sleeping with ten other people. You or I are just as likely to come down with it, if we are careless, as anybody else.
How do you reach a yuppie? How do you tell a yuppie, graduated from college and making $30,000 or $40,000 a year, who goes to The Club Clean Cut on a regular basis and is 25 years old and thinks they are going to live for eternity – how do you tell him he's a prime candidate for AIDS if he goes home with that girl? Society matrons are now paying attention because their interior designers have AIDS. When is Archie Bunker going to figure out that it's going to affect him? When his children come down with it?
Bering [Methodist Church] has a women's group now. Women who have AIDS have ten times the discrimination men have. Many of them have got it through bisexual husbands that they never knew were bisexual, or husbands who used drugs. They are suffering such trauma to their lives and at the same time everyone who knows them is condemning them. When women get AIDS they die. There's no support group, there's nothing, except maybe "You bitch, how'd you get it?" The turnaround of a woman who's diagnosed is so fast that they are wondering if it's biological. I think it's mental and emotional. The minute she's diagnosed and tells one person her life changes drastically. It's the same with everybody, but in the gay community a person is diagnosed and they tell two friends and those friends don't walk out on them.
Why Is It Happening? Who's to Blame?
I see people who have AIDS as soldiers in a war. There has to be some reason AIDS is here. Maybe the reason is to make America and Africa and the world evaluate its way of delivering health care. I do believe there is probably something and these people are merely sacrifices in it. I do not believe they brought that upon themselves. But maybe all along it was part of the plan – that their lives are cut short for a greater prupose.
It tests your faith – without a doubt it tests your faith. The Houston religious community has risen to AIDS like nothing we've ever seen in this town. There's a Catholic Church in Humble with an AIDS hospice. The priest opened it because somebody in the church got AIDS. The religious community in this town has truly responded to the AIDS epidemic. Not all faiths, but as a whole the religous community has been among the leaders in the AIDS movement in this town – support groups at all churches, the education Sunday every Valentine's weekend that's gone on for three years now. A special compassion has come out of all this. It does test your faith. When your friends are dying by the dozens you have to say why, why, why. You have to be strong in your faith to battle that. That's why I have so much respect for the gay community who have flocked to churches – maybe struggling with that issue.
Doing Something About it Personally
The main thing I say to people about AIDS is to open your mind, pay attention, think about it – because it's here! Be compassionate to anybody you know who has it or anybody you know who knows someone who has it, because those people are suffering. Educate your peers, your own family, your own friends. I became a den mother when I had two roommates. They would come home from the bar with a date, and I'd go banging on the door – "Have you got your condom?" Do you know what it's like sitting in a straight bar that looks like Cheers and trying to tell people not to go home with the good looking guy next to them? It's awful. People are not going to stop having sex. I'm not, you're not, nobody else is. But we do have to be safe. That's all. Pure, simple common sense will protect you. I think in your own way you have to educate people, you have to remind them. If you're someone who knows about it, you have to tell others. If you're not someone who knows about it, learn about it.
Pay attention to what your government is doing. If you have ideas, help solve the problem, because it is a public policy issue like nothing we've dealt with in years, the likes of which are devastating the health care system in this country. It's an epidemic. How anyone got it is irrelevant. The thing is if you don't have it, don't get it. And it's so easy not to get it.
When venereal disease was first discovered, it was killing hundreds of thousands of people. It was a plague and that's what AIDS is. It's just like when we figured out herpes. But we can live with herpes. AIDS we can't.
AIDS deals with your immune system. If you're diagnosed HIV positive and you're working yourself into the ground, drinking and smoking, your immune system is already weaker than mine, so you're going to get sick. If you believe in the body positive and you treat your body well, you can live an indefinite length of time. Nobody really knows yet. There are people who've tested positive for AIDS. They have the virus in their body and they can transmit it, but they are not sick, and they have not gotten sick. And nobody knows why. But I believe that those people have the fight in them to live. It may ultimately get some of them. There's one guy who's lived 8 years with AIDS. We do know that there's not a cure. We do know that believing in yourself can make you live longer.
What's Being Done – The Public/Private Sector Partnership
In 1984 the mayor formed the Mayor's Task Force on AIDS. It was made up of medical professionals and others already involved in seeking solutions to the AIDS crisis. It was a small group with no funds, but they accomplished quite a bit. They streamlined reporting, set up some education guidelines and worked to get the AIDS educational brochure in the water bill.
They also determined that it was a bigger problem than they could handle and recommended the formation of a new body. That's when I was hired by the mayor to join her staff – actually I was hired for another position but took over AIDS in the process of appointing the new body that would work on AIDS. We talked to a number of different people to figure out what could work best for the city to address the AIDS issue.
That's how the Houston-Harris County Panel on AIDS came about. There were 29 people on the Panel, with the mayor and Judge [Jon Lindsay] both serving on it, and Bill Teague of the Blood Center as chair. That group and its committees met for one solid year. The Education Committee established some really good education guidelines on what should be said about AIDS and its transmission, and the Research Committee compiled a list of everyone who was doing research in Houston and their funding. The Resource Development Committee held seminars in the philanthropic community on how they needed to get involved. It was an active and dedicated group that met from October 1987 to October 1988.
Their goal was to find ways for government and the Houston community to handle the AIDS epidemic – how could the private sector, government and nonprofit institutions work together to address the AIDS issue. They recommended the formation of the Greater Houston AIDS Alliance, the new entity, incorporated as a nonprofit organization, that has just begun. It is funded partly by the Hospital District and partly by private funding. In the spring of 1988, United Way committed $100,000 to the AIDS Panel in the form of the AIDS Care Fund to get some private sector dollars rolling. They have now put that money into the Greater Houston AIDS Alliance. The goal was to make a statement to all of Houston that the private sector has to put money into AIDS because it's going to have to help pay for it now or later.
The 26-member AIDS Alliance board is chaired by Dr. George Alexander, board member of the Hospital District, a group whose main concern is the cost of care and effective delivery of care.
At present, an AIDS patient can spend as much as 12 hours sitting around Jeff Davis waiting to be seen by a doctor. They have to sit in the Chest Clinic with tuberculosis patients. The county has traded with M. D. Anderson to get their old rehab center. It's a very good location on I-45 just outside the loop. It will be opened as an AIDS outpatient clinic, and the Alliance and the Hospital District are going to work to provide transportation.
Research has shown that the less time AIDS patients spend in the hospital the longer they live. Outpatient care is the best thing for people with AIDS. It's better for them, and it's better for the hospitals. Putting somebody in the hospital for 20 days to receive a drug treatment makes no sense if they can do it in a clinic and have the same treatment.
The goal is to get all the governmental units cooperating together with business and with the community organizations. The more community organizations do, the less tax dollars we spend. Isn't it better to make a tax deductible charitable contribution than to pay more taxes? When you hear those people come knocking and saying we need money to support our program, support them.
The thing about Houston that is so special is the way this community has risen to respond to the AIDS epidemic. With all the different fund-raising programs that went on last year, over a million dollars was raised for AIDS – this is from the private sector. Those funds are going to people like Bering Community Service Foundation and the AIDS Foundation of Houston. The Art Against AIDS Program raised over $100,000 and funded a lot of different organizations. The artists took their talents and they put a month-long series of events together. They formed a board and accepted requests from community-based groups who need funding to keep their day care centers, dental programs, and other services going.
These private sector service providers are an important part of the solution. An indigent PWA [Person with AIDS] can get groceries from Stone Soup. It takes them two years to qualify for government programs like food stamps that will help them get food. There are some hospice care programs. One, operated by the AIDS Foundation, is a place where you can stay once you have been diagnosed, you are released from the hospital and you have nowhere to go. There is a time limit, but the idea is a place to stay until you find housing you can afford, or you get rent subsidies, or you get your disability.
Public/private sector partnerships are the way to fight this disease. I as a government employee can go out and speak to people about AIDS, but you will listen more to a doctor. Our doctors are working with the health departments to go to the schools and educate people. The Harris County Medical Society produced an educational book that school districts from all over the country are now using because it's one of the best published.
The City through the efforts of the mayor and Vince Ryan allocated $525,000 of community development funds for housing of indigent people with AIDS. One of the community-based programs has to operate the program, and the City is providing federal funding for it. There are some efforts out there now to locate a project that will work. This is a great public/private partnership. The community said this is a need, and the government agreed, and someone came up with this solution to the problem. That's the way it's got to work.