by Pamela Vincent
The world marks 21 years since the first case of AIDS was diagnosed with great strides having been made in researching the disease and in treating the symptoms of people with the disease. The early fear and panic it caused has given way to an attitude of “Let’s not talk about it and if you have it keep it quiet mentality,” according to AIDS activists. Because people aren’t willing to talk about AIDS, it’s difficult to keep public awareness and education activities a priority. How many people are aware that the AIDS epidemic is still growing out of control? Few paid much attention to anything but the protests at the last World AIDS summit.
AIDS has moved off of the front pages of most major newspapers. Americans have changed their opinion about the disease because of the recent advancements in a treatment regimen. Earl Pike from the local AIDS Task Force, Latonya Murray with the Disabled Men’s Shelter and Marty Hiller with the Cleveland Free Clinic are all on the front lines in the battle to assist people suffering from this debilitating disease. The three discuss the increasing number of people with AIDS in our area, especially low income and homeless people.
Grapevine: Earl, what is the function of the AIDS Task Force and how long has is been around?
Earl Pike: The AIDS Task Force was founded in 1983 and this coming February marks our 20th year of existence. Back when the first AIDS cases were being diagnosed there was a great deal of fear and paranoia surrounding AIDS and initially everyone was in a state of panic. Because of that the initial cases of AIDS in North East Ohio were treated poorly. The people that were infected had no support system and even the health care community, who didn’t have as much understanding of the disease as they do now, were afraid to treat AIDS patients. Individuals with AIDS were isolated not only from other patients but from the community as a whole. Early on volunteers ran the Task Force and over the last 20 years the number of services available has grown with the number of cases reported.
The way it works is that each person that comes to us has a social management worker assigned to him or her. Because the disease brings with it feelings of isolation and despair, their caseworker is often the only person they can talk to about their disease that understands what they’re going through. Each of our caseworkers is assigned 100 clients (60 over what the State Board recommends). The first thing we try to do with homeless individuals is find them a place to live.
We have a housing program that can accommodate families as well as individuals and a long-term facility for people that are sicker and need 24 hour care. Our housing program can only accommodate 750 out of the 1,700 cases we are treating so there is a severe shortage. Our demand on food load has tripled and on top of that our State funding for prevention was cut by $200,000 and our State money for AIDS medication was cut by 1.5 million. This means that more people will go untreated, get sick and die.
The rest of our services cover transportation to and from Doctors and other appointments, recovery resources for clients that are also dealing with substance abuse problems, massage therapy, education departments that targets numerous races/genders for education and prevention, providing 200,000 meals a year and a person who deals with public policy and educates public officials about HIV and AIDS. We have an extremely dedicated and hard working staff. They are constantly dealing with sickness and death and it takes it’s toll on you and it changes you.
GRAPEVINE: What do you feel is the number 1 reason for the increase of AIDS cases in Cuyahoga County?
EP: Largely there is mass denial that we have a serious problem with AIDS. People think it can’t happen to them, they take risks or they think that a cure will be found to treat them. They confuse the success with medications to treat AIDS with a cure for it. There is no cure for AIDS! The majority of people think that we’re at the end of the epidemic but we haven’t even peaked in numbers yet.
We don’t expect a vaccine until around the year 2050 and by 2010 (8 years from now) we estimate nationally an accumulated 210 million cases of AIDS throughout the world. By the year 2020 over 70 million people will have died from AIDS. Right now Russia has a very large population of AIDS patients as do China (20 million cases) and Africa has a severe AIDS epidemic. The first AIDS case was diagnosed in 1981 and anyone born that year will be 70 by the time a cure is found. Most of us were young when the initial outbreak began. This will go on to affect our children and grandchildren.
These are just straight facts I’m giving you.
GRAPEVINE: What is the current number of infected individuals in this area? Do you know how many of them are from the Homeless population?
EP: Right now there are approximately 1,700 cases of AIDS in this area of Ohio. In 1999 the number was 718 so it’s spread almost two and a half times in the last 3 years alone. Of that number 60% are African American, 15% Latino and 25% White. The largest number of cases in this area is among African American men and 29% of our clients are women heads of households. The profile of new cases is directly related to poverty and race. The population it affects the most makes less than $10,000 per year and 42% of the people with HIV have been homeless at least once. You can literally place a map of the poverty areas in the United States or even the World and lay it over a map of the areas with the highest number of people with AIDS and it would match.
AIDS clearly has had a significant impact nationally on poverty areas. Poverty and Race go hand in hand with the disease. These people have overlapping problems. Not only are they dealing with low income or homelessness but also they often have a substance abuse problem and poor health. When someone comes to us we spend months covering the basic survival issues before we can even deal with HIV. The service our staff provides makes sense because they understand the disease and the people they treat, in fact 15% of our staff have HIV so they’re aware of the needs involved.
GRAPEVINE: Given that this is not a new virus and people are fairly educated to the causes of the HIV virus what else can we do as a community to help in prevention?
EP: For the low income and homeless population you can’t fight AIDS by giving people a condom and a place to live. You have to give them hope and shelter and stability among other things. Homeless people lack inner qualities that need to be addressed. For the rest of the general population there’s still a huge phobia surrounding AIDS. People don’t like to talk about sex and drugs. For example there aren’t any condom ads on TV. Why not? It would certainly help in prevention. People talk about this being a gay disease and initially it was a gay disease and it continues to largely affect the gay population. However, the thing to remember is that it’s not who you are but what you do that counts. More and more women are having unprotected anal sex. That puts them at a greater risk. Some people think God is punishing people with AIDS. If AIDS was God’s way of punishing us we’d all be sick.
In reality the gay population is responsible for every organization that helps AIDS victims and the progress that’s been made in finding cures and treatments. They took the initiative to help themselves and now there are professionals that provide services where once it was largely run by volunteers and now funding is available but there’s still a long way to go and more money is needed to treat the afflicted and to do research to find a vaccine.
GRAPEVINE: Are homeless people more at risk of getting AIDS than other groups of people?
EP: I would say because of their lifestyle they aren’t as healthy to begin with and because the homeless often have other problems they are at a greater risk for acquiring the disease. It’s also impossible to do medical care for someone without housing. They have special needs and nutrition that needs to be addressed. I urge all the shelters to give out free condoms to the homeless and to educate their residents about prevention whether it’s sexual or drug usage. Our staff is available to speak at any of the shelters or for any group that needs education. I think the shelters should make it an official policy to hand out condoms to everyone coming and going from their facility. The cost of a condom is only 10 cents. That’s an inexpensive cost to save a life.
Laytonya Murray is a Shelter Supervisor at Mental Health Services. The Grapevine asked her about her contacts with the problem of AIDS in the homeless community.
GRAPEVINE: Can you give me some back round information on the Disabled Men’s shelter? How long in existence, the average number of residents, lengths of stay...etc.
LM: The Disabled Men’s shelter has been in existence for two years and has accommodations for 50 men. We often exceed that amount and try not to have more than 55 men here at a time. The average length of stay so far is 8 to 10 months. Most of the residents (about 80%) have mental illness disabilities and they usually move out of here and into a group home or a facility where they can develop daily living skills so they can eventually care for themselves.
GRAPEVINE: Has the increase in AIDS cases in Cuyahoga County impacted the Disabled Men’s shelter?
LM: No not really, we’ve only had 3 residents this year and 3 last year that had AIDS. Of the men afflicted with AIDS a few of them have been transient for a long period of time. They have the same provisions available to them as the other residents.
GRAPEVINE: Does the shelter have special provisions or make special provisions for residents with AIDS?
LM: The shelter does not have or make special provisions for them and the residents with AIDS usually transfer to a facility where they can stay long term and get the proper care they need. The men usually get help from the AIDS Task Force and are placed in a facility through their assistance.
GRAPEVINE: Has this created financial or other additional burdens for the shelter or are the AIDS residents just as challenging as the other disabled residents?
LM: We haven’t experienced any additional burdens because of them. The men don’t usually stay here very long. They seek long term care at a facility specifically for their disability. We do have an educational group where we teach sexual prevention of AIDS and we provide free condoms to the men. We encourage them to practice safe sex but some of the men don’t care about their well being that much.
GRAPEVINE: Do you feel that being homeless contributes to their disability or makes them more susceptible to acquiring a disability or AIDS?
LM: Some of the men are homeless because they have disabilities and I think the homeless men that are more transient are at a greater risk for acquiring AIDS or any other disability. They are in situations where there is the potential for contracting the virus and some of them take that risk. They either don’t know any better or they don’t care.
Marty Hiller is the director of the Free Clinic of Greater Cleveland. They serve a diverse population including homeless people. They also have a program for people with AIDS.
GRAPEVINE: Working at the Free Clinic, have you seen a large increase in the number of AIDS cases within Cuyahoga County? If so what do you attribute that to?
MH: We’ve never had a disease that we knew as much about as quickly as we did and knew how to prevent it and yet new AIDS cases continue to occur. People seem to have the attitude that it can’t happen to them and people as a whole aren’t as vigilant about the disease and that has contributed to the increase. There’s a new generation of people that it is affecting. It initially hit the gay population first, and now we see young people in their teens and early 20’s in a situation where they explore their sexuality and they don’t have the same awareness and education that we were exposed to when the disease scare initially started. A large portion of new cases is among the younger generation. Education among teens is high but with teens you have a significant barrier in that they think it can’t happen to them or that it’s somebody else’s problem.
Drug usage also contributes to the increasing number of cases of AIDS. The syringe exchange program hasn’t been greatly accepted by the Political areas and hasn’t been widely put into use and therefore it has the outcome of increasing cases.
GRAPEVINE: Do you know what percentage of the new AIDS cases are Homeless and are there more men affected than women?
MH: I don’t really know the answer to that question. Perhaps there are people at the state level that would know this answer. The homeless and poor seem to have a disproportionately higher rate of AIDS, but I don’t know the percentage of homeless or the number of men versus women infected.
GRAPEVINE: Are homeless people able to get long term treatment for AIDS from the Clinic or are they referred to another facility or treatment center?
MH: Yes, the clinic has a treatment program that provides long term care without regard to income. There are a number of out patient treatment programs that provide care without regard to income. University Hospital, and Metro, Care Alliance has a treatment program. Care Alliance was previously known as health care for the homeless. If we have someone in our treatment program that needs hospitalization we would use Metro. Infectious disease unit.
GRAPEVINE: Do you think being Homeless increases the chances of acquiring HIV and AIDS?
MH: When you’re homeless you often have severely limited options to how you live and it can impact the ways in which this disease is transmitted. We suspect more numbers of infections due to sexual transmission than through drug usage. We do offer free condoms and have a syringe exchange program in place. In some cases an individual or homeless person might not know any better and in other cases they might know and not care. If they are using drugs or alcohol or if they are mentally ill they might take other risks like practicing unsafe sex.
GRAPEVINE: What kind of cost is associated with treating the AIDS virus on a per person basis?
I’ve heard it’s approximately $150,000 over the life of the disease and most of that is the cost of medication.
It seems that people with AIDS are living longer due to advances in medications and treatments. Do you find that is true among the Homeless people suffering from AIDS or do they have a harder time fighting the disease due to their being homeless?
MH: Once you’re infected you need to keep yourself in good health and use a complex array of drugs and you fit that together with a person with an unstable, complex lifestyle and it works against them. If they don’t keep to their medication schedule they won’t stay healthy. It’s imperative that they take all their pills every day and the lifestyle of the homeless doesn’t work well with the treatments that can be most effective. Homeless people with AIDS presents a real problem because if they remain homeless they won’t effectively be able to be treated and they won’t keep themselves healthy otherwise. When we treat homeless people we recommend them to case management services to either help place them or to the AIDS Task Force for help placing them.
In dealing with AIDS patients we work to improve the over all health of the individual, we have made great strides in treating this disease but we haven’t found a cure. People are living longer and with greater quality of life but we can’t take a person and cure them of AIDS. Public health speculation puts a vaccine cure date at approximately the year 2050. We can’t put an exact cure date down because we don’t know when it could happen and we can’t say that a vaccine or cure for AIDS is soon to come because it’s not.
Published by the Homeless Grapevine Cleveland Ohio November 2002 Issue 57