There is a long hallway at the Open Door Clinic in Elgin, Illinois with locked file cabinets, a copnnection to the 30-year legacy of HIV and AIDS, as this is one of the premier providers of sexual health and wellness services in the nation, not just the state. Elgin is about 40 miles from downtown Chicago.
Inside the cabinets are charts of clients who have died or moved away.
"Sometimes I would be in those files and run across someone who would take me back to the early days," said Phyllis Stephens, now a patient coordinator, though she has had many titles over the 28 years that she has worked at the facility whose mission is to improve health and wellness by providing education, prevention, screening and treatment of HIV/AIDS and other sexually transmitted infections.
"I often talked with Pat Lev, who has also been at ODC a long time, that we needed to do our own AIDS quilt so those names would not be lost forever. There are some people in [ those cabinets who ] I am the only person left at ODC who knew them. There are some people in there who only Pat knew."
Two years ago, they finally made a quilt for the Open Door Clinic in Elgin, and another quilt for the Aurora location—and the entire staff participated in the project, not just Stephens and Lev.
"Everyone picked out at least one person who they knew and wanted to do a square for," Stephens said. "As we sat around the table making the squares, we talked about the clients who had died. Perhaps it meant the most to Pat and me who were able to tell others about these people who only we knew. But we also learned things we didn't know."
For instance, another staff member's husband had died from AIDS, but she had never talked much about it. They learned he loved to fish, as she made a fish on his square.
"We made sure that everyone's name got included in those quilts," Stephens said.
After all, the Open Door Clinic is loaded deep with history. HIV/AIDS has been known as a disease for about 30 years. ODC is 35, as it first opened as a sexually transmitted disease clinic.
"I remember when the first MMWR [ U.S. Centers for Disease Control Morbidity and Mortality Weekly Report ] article came out on what became known as GRID [ Gay Related Immune Disease ] and wondered if we would ever see a case," Stephens said. "Little did we know that our STD clinic would become the main source of services for persons with HIV in our area.
"When I began in 1983, we had a core group of regular STD clients who we knew well, many were IV drug users and prostitutes. They were among our first people diagnosed with AIDS. Two of those people are still with us, [ but ] the rest died many years ago from AIDS-related illnesses."
The HIV antibody test became available through the Illinois Department of Public Health in 1986, and ODC was among the first agencies trained to provide HIV counseling, testing and partner notification.
In 1986, ODC did 50 HIV tests.
"We were not the first testing site to have a positive test, but we were the first testing site to report a positive test to IDPH," Stephens said. "At that time, we had no services to offer persons who tested positive. There were only a handful of doctors in Chicago who had any knowledge about HIV and most of our clients had no means to go to Chicago. There were no medications. The only thing we could offer was to be their friend through this."
In 1987, ODC did 100 tests.
"Back then HIV testing was all anonymous. It was not a routine STD test," Stephens said. "It wasn't until Magic Johnson held his press conference to announce he was HIV-positive in 1991 that our HIV testing took off. The week Magic made his announcement, we did almost 50 HIV tests that week alone."
ODC now has a full-time staff of 18 from a staff of two, plus some part-time people for clinics.
In the last 10 years, ODC has expanded its mental health services, and also has a full-time therapist, a part-time psychiatrist and a strong dental program. "There is such a strong correlation between oral health and general health," Stephens said. "It is great to be able to provide this service also.
"The executive director who I originally worked for said all of us who worked at Open Door Clinic bled Open Door Clinic. I never liked that idea because life needs to have balance and your job should not be all-consuming. But having worked almost half my life at Open Door, I will say the staff and clients I work with have left an indelible print on who I am.
"In my life before Open Door, I worked in family planning and became friends with the staff of ODC because we shared many clients and similar challenges in the small non-profit arena of the far suburbs. I eventually became a board member of ODC and then joined the staff.
"Today, as with all agencies working in the HIV field, we struggle with funding and seeing unmet needs. But the staff of ODC is its biggest strength. They are wonderful people, very dedicated, caring with a wealth of knowledge and experience."
Stephens, 60, an Elgin resident, joined ODC in 1983.
"We are going to have to look at our facilities, at both locations, and determine if we are going to stay at the same location and invest in the infrastructure there or look for a better location," she said. "We also would like to broaden our clientele to include sexual health for non-HIV infected persons."
Stephens said the training for counseling and a testing site was so different back in 1986 as opposed to 2011. "We already had the experience of giving test results for STDs, so there was some correlation," she said. "But the knowledge of the disease was so abstract back then. We were trained in what was known, but compared to now, the knowledge was very limited.
"It was wonderful to give people quicker results [ back then ] . We offered the SUDS Rapid HIV test when it came out in 1992. It was amazing the number of people who would not get tested because of the wait for results. Once they got their courage up to get the test, to know that they did not have to wait two weeks for the results meant a lot to many people. Now the rapid test is the norm."
The HIV medical care at ODC began in 1993 through then-medical director Dr. David Lucks, and then-executive director Hugh Epping—and without any funding. All medical funding at the time went to Chicago/Cook County, DuPage County and McHenry County.
"We at ODC would tell people [ that ] they had HIV, but we had no resources for them if they did not have insurance," Stephens said. "Dr. Lucks would see people when they were so ill they [ had to be ] hospitalized, but once they were released he was not able to continue to see them if they did not have private insurance or Medicare. The frustration of this large population of people who had nowhere [ to go ] for care except Chicago motivated them to make the services available through Open Door, even if there was no funding.
"Dr. Lucks convinced the hospitals in Elgin and Aurora to alternate donating lab tests. He got Caremark to donate a nurse and a nutritionist during the clinic times. The board of directors for Open Door was very hesitant to take the clinic in this direction. For every roadblock they put up, Hugh found an answer. Eventually the board of directors said, 'Yes,' that we could provide medical care for persons with HIV.
"By this time HIV was beginning to overshadow our STD work. We held our first clinic with five patients. Three of those five are still alive."
The clinics grew quickly, and within a year, they were holding them in both Elgin and Aurora.
"Our HIV medical care has always been a combination of medicine and social work," Stephens said. "Because Open Door Clinic started from a bunch of social workers, it has always had that kind of a slant. The nurse and nutritionist from Caremark always commented that they loved their time at ODC because we had this blend of medicine and what is now case management.
"We were lucky in that when we started seeing HIV patients medically, we had AZT and then that year Videx came out, and as people failed on their medications we always had a new medication coming out. We always had hope that the next medication would stop the progression.
"I remember working with patients on how to take AZT five times a day; and then how to take the big Videx tablet—either chewing it or dissolving it in water and drinking it. We were aware how toxic these were to the patients because of the horrible side effects, but it was all we had. Then suddenly, in 1995, we had our first protease inhibitor and life-expediency turned around."
Today, they now average more than 400 HIV medical clients per year between the Elgin and Aurora sites. The focus is not just on HIV, but also the other health issues of the clients such as diabetes, hypertension and health maintenance issues.
ODC offers HIV case management, dental care for persons with HIV, mental health and substance abuse counseling, support groups, and social events. Stephens said they likely will be providing healthcare to the transgender community later this year. "We are also discussing expanding our STI and HIV testing services to area colleges," she said.
"The face of AIDS has definitely changed, but I still have throwback moments. We see people so much healthier with HIV now, but we still see people who, for whatever reason, did not get tested until they were so sick that they [ needed to be ] hospitalized. They will come out of the hospital, using walkers, exhausted, barely able to get around. We tell them they can get healthy again, but they have to do the work—take the medications, eat right, live healthier lifestyles, stop [ using ] drugs/alcohol. It is always amazing how people can come back from near-death, and look and feel great."
Stephens noted that ODC often has clients come to them from other countries as refugees. "The world of HIV/AIDS that they know is of death and misconceptions," she said. "We have a lot of education to do with refugees and often it must be done via a translator with limited time. So while things are getting better all the time, sometimes we still have to go back to basics."
That includes the monthly support groups, which are great sources of education, fun and support, Stephens said: "We have had a Hispanic support group for over 10 years. It began when the Hispanic community was very secretive, and it was to the credit of the case manager who started it that people came. They trusted her and from that trust they learned to trust and support each other. We also have a Bingo group that meets regularly; we know that sometimes you just need to have fun. Often times our clients don't know how to have fun without drugs and alcohol. Bingo shows them that they can have a good time on a natural high."
Fun is, of course, preferred, especially with all of the death ODC has endured.
"We attended a lot of funerals in the early days," Stephens said. "We always asked permission of loved ones for us to attend the funeral. Our presence at a funeral was sometimes a confirmation that the person had HIV/AIDS and if the patient/family had kept the HIV secret, we did not attend."
ODC staff actually planned funerals for several clients.
"At our staff meetings, we always take a moment to talk about clients who have died, and we light a candle," Stephens said. "It's a time to remember, often with a funny story or some shared time with them. Some months we would be talking about four or five clients. About 10 years ago, we had our first staff meeting when no one had died.
"Now it is the exception rather than the rule to have a moment for a client who died."
