Stigma of HIV-AIDS often is a barrier to care
March 1, 2002
Stigma of HIV-AIDS often is a barrier to care
Finding patients, learning differences was challenge
The nurses who worked on the HIV-AIDS disease management program for Florida Medicaid encountered patients who ranged from migrant workers who didn’t speak English to well-educated, sophisticated men who knew more about the disease than many of their physicians.
But it wasn’t always easy to find the patient to whom they were assigned, even though they were receiving government-financed health care.
"With HIV-AIDS, social stigma is a primary difficulty. There is a lot of hiding, a lot of fear of the disease becoming known. We had bogus addresses because the patients didn’t want to be found. It took a lot of research and investigation to find the patients and a lot of creativity to get them to agree to a meeting," says Judith A. White, RN, CCM, BHSA, director of operations for Specialty Disease Management Services Inc. (SDMS), the Jacksonville, FL-based company that developed and administered the program for two years.
The first time they met with patients, the nurses typically invited patients to meet them at a fast food restaurant. On follow-up visits to the patients’ homes, they wore street clothes and often parked their official vehicles blocks away so the neighbors wouldn’t know they were visiting the HIV-AIDS patient.
The nurses had to be culturally sensitive. They had to learn about their patients, how they thought, and how to work closely with them.
"It took six months or more for some of the patients to be comfortable with the program," White says.
The confidentiality issues are much more intensive than with other disease management programs, and it’s much more important to maintain confidentiality with HIV-AIDS treatment," says Frederic S. Goldstein, MHA, president of SDMS.
The nurses also addressed preventive measures to keep the patients from contracting other forms of the HIV virus.
"Once a patient has HIV and is on one drug regime, it doesn’t mean he can’t be infected with a new strain. The patients need a good understanding of the cause of the disease and preventive measures," White says.
Factors that distinguish HIV-AIDS from other chronic diseases include:
1. Confidentiality: Because of the social stigma and problems in the work environment, HIV-AIDS involves confidentiality and other issues that usually are not encountered in other disease management programs.
2. Multiple medications with confusing regimes: Some HIV-AIDS patients take as many as 36 drugs a day. Some take the drugs with water, some before meals, and some after meals.
One of the biggest challenges of the SDMS HIV-AIDS program was convincing the clients of the necessity for taking their medicine like clockwork.
"HIV-AIDS patients have to understand the disease and the treatment regime to be able to make appropriate decisions for themselves. For instance, studies have shown that if patients are not 95% compliant with their drug regime, they run the risk of not controlling the virus," says Goldstein.
For instance, most patients in the Florida Medicaid population were taking at least three antiretroviral drugs, and many were showing resistance to them because the drugs were not prescribed or taken appropriately.
"The patients have to understand that they have to take their medications every day, on time, and cannot afford to miss a dose," Goldstein says.
3. Lack of communication between primary care physicians and specialists: Severe lack of communication between the primary care physician and specialists also hindered care, Goldstein found. For instance, the primary care physician might be treating a patient for asthma and be completely unaware of drugs prescribed by the HIV-AIDS specialist.
4. Reluctance of physicians to take charge: The disease and its treatment methods are changing so rapidly that it is intimidating to the average physician. They prefer not to treat it.
Physicians need to treat at least 100 patients to be an expert on HIV-AIDS. Therefore, many primary care physicians are uncomfortable treating the disease.
In some cases, specialists would not accept the role as primary care giver for a patient.
5. Transportation problems: Transportation was a tremendous problem for the Florida Medicaid patients. For instance, some clients might have medicines that were to be refilled every 30 days but not on the same day. This meant that people with little or no transportation had to go to the pharmacy multiple times in a month.
The nurses helped the patients hook up with transportation services or switch to pharmacies that deliver.
6. Social issues: In the Florida program, there was a high incidence of intravenous drug use, and a high percentage of patients who did not have telephones. There were clients who moved frequently and who were on and off the Medicaid enrollment list.
Tips for managing the care of HIV-AIDS patients
- Understand the disease and the wide array of drugs used to treat it.
- Understand each individual patient’s approach to the disease and his or her desire to be treated or not be treated.
- Identify the specific personal barriers to care, such as confidentiality issues, cultural issues, and language barriers.
- Consider outsourcing your HIV-AIDS management, suggests Frederic Goldstein, MPH,
president of Jacksonville, FL-based Disease Management Specialty Services Inc. It’s very specialized care, he adds. - Identify practitioners who are doing an excellent job and those who need additional education. Make sure each physician treating your patients understands the disease and up-to-date treatment methods.
- Keep in mind that people with HIV-AIDS range from those who know little to those who are well informed. If you present inappropriate information to well-informed patients, you will lose credibility.
- Develop a close relationship with the patients. Patients typically will tell nurses or case managers things that they will never mention to physicians.
- If patients have a primary care physician, make sure that they also have ready access to an HIV-AIDS specialist.
- Carefully collect outcomes data so you can focus on what changes may be needed in your program.
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