AIDS Coordination and Information Services Unit Celebrates 20 Year Anniversary

By Mary Leaver, Editor

In 20 years, any office or unit could count a number of organizational or philosophical changes: changes in personnel, policy or clients served. But for the OKDHS AIDS Coordination and Information Services unit, the changes have been much more meaningful.

Since its inception in 1987, the unit has provided HIV case management services to Oklahomans diagnosed with HIV and AIDS. It is the oldest such unit of its kind in the state and celebrated its 20th anniversary on Jan. 10.

“If we can get someone to be healthy and productive, that meets the agency’s mission,” said David Odle, ACIS program manager. “They may not be able to do it for themselves at first, but with our help they will eventually be able to be independent.

“If you have the will to live and you have support, you can make it.”

Odle recalled that back when the four original staff members started, there were no such services for people with HIV or AIDS. The OKDHS staff, comprised then of Gaila Smalley, Sharon Thompson, Mike Fischer and Larry Sorrels, laid the groundwork from scratch. Odle has been with the unit for 16 of its 20 years. Today the staff includes Smalley, Stan Smalts, Kathy Marion, Kenya Johnson and Rebecca Buswell.

Fischer, now programs manager II in the Field Operations Division, said that as the funding levels for other community organizations might have fluctuated over the years, ACIS has been a constant in the community.

“It’s the only place where the phone number hasn’t changed for 20 years,” he noted.

While the challenges were numerous in the beginning, Fischer recalled that there were many improvements.

“When I left in 1997, we were starting to see five to six major (HIV) drugs coming onto the market,” Fischer said. “Today, more people are able to access care sooner.”

ACIS clients represent all ages, from three months old to the elderly. Odle said one client is in his eighties. The unit’s case managers have seen an increase in senior citizens diagnosed with HIV. Young adults are at high risk and don’t realize they are in a high risk group, Odle said. Women of childbearing age diagnosed with HIV have increased.

Odle noted caseloads have significantly increased within the last few months. In September the unit received at least one referral each working day. Many are in their late teens and early 20s, he added. This trend is emerging not just in Oklahoma but nationally. Since end of July, ACIS has seen a 25 percent increase in caseloads, Odle reported.

Even with the growing caseloads, Odle said the unit is aware that many of their new clients will benefit from advances in HIV/AIDS treatment. In the early days, case managers closed cases as quickly as they opened them. The reason: clients often died soon after their initial diagnosis. But that has changed, Odle noted. The ACIS staff has been working with many of the same clients for five, 10 or more years.

As their clients have been living longer, Odle said the need for their services has increased. The unit receives referrals from OKDHS staff, doctors, hospitals and clinics, other state agencies, and via the internet.

Helping clients navigate the system

There may be some ACIS clients who don’t yet qualify for Medicaid, but they still need medical care, including dental care or nutritional supplements that insurance may not pay for, Odle explained. It is also possible that ADvantage Waiver funds may be available or federal funding through the Ryan White program could provide home health services. The National AIDS Drug Assistance Program is federally funded and can provide the medication that is so necessary for clients who are living with HIV, he noted.

For clients who need help with insurance assistance, ACIS could help with high co-pays, help pay premiums, or help with the client’s COBRA payment. If clients are not working, ACIS tries to help them get into the state’s high risk insurance pool. If they are working, Odle said his team tries to help with Insure Oklahoma premiums.

Odle added that there is also a food pantry for those living with HIV, and they may also receive basic toiletry items. They can pick foods best suited for their diet and medication needs. Some clients may qualify for the Supplemental Nutrition Assistance Program to purchase staples like milk or eggs.

“We try to be creative and to make the dollars go as far as possible,” Odle said.

Odle said the state’s recent economic slide has been difficult on ACIS clients. Recent Oklahoma job losses have resulted in more people going on COBRA. Some companies have changed their insurance plans, causing drug co-pays to go up 50 percent. Some medications could cost as much as $2,200 for a 30 day supply. But ACIS can help with co-pays.

Funding for ACIS comes from the state with some federal matching funds. They receive no grants because those funds come with income restrictions for assistance. Odle said they want to be able to assist as many people as possible, regardless of income.

Providing training, helping OKDHS manage caseloads

Since the ACIS unit is able to provide so many services, it can help reduce the need for many of these cases to be managed on an ongoing basis by other OKDHS divisions, such as Adult Protective Services, child welfare or family support, he added.

He added the unit’s staff is always ready and willing to provide training in the state for OKDHS staff who may not know the unit exists or what services they can provide.

“We are always willing to do training in the Human Services Centers,” he said. “We can answer questions, tailored to the division. We don’t tell anyone how to do their jobs, we just enhance what they already do.”

Odle said ACIS receives referrals from APS and can help clients obtain housing, medication, or fill other needs. Or, they may be asked by child welfare to consult on a case. ACIS can help a child’s parent get home health or counseling, stabilizing the home environment for the child.

“We can check on someone weekly, help them get Social Security and it is a resolved case for APS, not ongoing,” he explained.

The ACIS staff is all trained in APS. “We all serve a vulnerable populace. We are able to help get people out and into a safe environment so they’re not taken advantage of,” Odle said.

He said the unit’s immediate goal is to get the word out to the state Human Services Centers that ACIS is always available to provide training or attend health or wellness fairs in any corner of the state.

Using an extensive network of partners to help clients

Also within the unit’s resources is an extensive network of partner organizations, such as Carepoint, RAINN and a number of non-profit health care providers. They all meet monthly to discuss how to best work together to provide services, he added.

The community network has also assisted clients with legal matters, such as estate planning or discrimination cases, through the Legal Resource Project. In one instance, the LRP was able to get a bench warrant dropped so a client could return to work and obtain health care coverage.

Odle spoke of one recent instance in which ACIS was able to help a rural client get the treatment he needed within just a few hours. The client lived in southwest Oklahoma, had no insurance coverage and was sent to the University of Oklahoma Health Sciences Center. There, he faced a 10 hour wait for help. Instead, ACIS contacted a Lawton doctor and set up a physician to physician referral. The Lawton doctor even agreed to treat the patient for free. While the patient was with the doctor, ACIS completed all the paperwork to apply for Medicaid and even called Social Security and made an appointment so the client could apply for disability. At the end of the day, the patient was able to return home and with drug assistance, Medicaid and Social Security disability.

Focus has broadened, but hope remains a constant

Focus on the disease has shifted from a national issue to a global issue, largely because of the numbers of people affected by HIV. By December 2008, about 600,000 people in the U.S. had died from the disease. That is more than died in the Spanish-American War, WWI, WWII and Korea. It is more than the population of Oklahoma City, Odle added.

Many people still think an HIV diagnosis is a death sentence, Odle stated. They don’t know there are medications and help. They may give up or won’t seek help.

“The will to live is a real powerful thing,” he said. “You have to always want to live.”