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Bethsheba Johnson
Chicago, Illinois

Bethsheba Johnson
  Nurse practitioner Bethsheba Johnson is part of an entirely African-American medical staff that provides specialized HIV care to a population in Chicago's far South Side that is 97% black.
Providing HIV Care to African Americans on Chicago's Far South Side Throughout much of her nursing career, Bethsheba Johnson has been an outspoken advocate for the compassionate care of HIV-positive patients. As a nurse practitioner at the Luck Care Center on Chicago's far South Side, she provides specialized HIV care primarily to the African-American community.

This clinic is unique in more ways than one. It is one of few HIV clinics in the area that is staffed entirely by African Americans, which Bethsheba feels can be an advantage in that it gives her and her colleagues a better cultural understanding of their patients. The clinic is also a one-stop agency: It not only conducts clinical trials, which Bethsheba helps coordinate, but it provides its patients with a wide range of services, including primary care, adherence counseling, case management, mental health counseling, substance abuse counseling and support groups.

This dedication to a comprehensive approach to HIV care, along with a culture that prides itself on the respect with which it treats each of its patients, is what sets Bethsheba's clinic apart from the pack -- and sets her apart as an outstanding HIV nurse.


How long have you been providing nursing care?

Twenty years. I haven't always dealt with HIV patients exclusively. In the '80s I worked with a lot of pregnant nurses who were supposed to provide nursing care, but didn't want to work with HIV-positive patients for fear of accidental transmission of HIV. Their decision was made completely out of ignorance. I was assigned that shift because it was pretty much what no one else wanted to do.

Why did you feel so fearless compared to these other nurses?

I understood how transmission of HIV occurred and the use of universal precautions with all patients regardless of their HIV serostatus.
"Our female patients are primarily mothers. They take care of their children first and neglect themselves."

What services does your facility provide to patients with HIV?

Luck Care Center, located on the far South Side of Chicago, was started as a dream for the people in the neighborhood who can't afford to travel. Dr. Sherry L. Luck, founder of the clinic in 1994, had a vision of providing care for HIV positive patients and their families in an underserved area of Chicago. There had been no specialized HIV medical care previously directed at HIV-positive people living in this mostly poor neighborhood. The clinic began in the Roseland community of the far South Side of Chicago. This community experienced white flight in the 1960s. African Americans began moving in when the caucasians began moving out of the community. The clinic is a one-stop agency. They provide the following services: primary care; adherence counseling; bioelectrical impedance analysis (BIA); clinical trials; nutrition counseling; HIV counseling and testing; bereavement services; case management; mental health counseling; pastoral care; prevention case management; peer counseling; prevention with positives; reading/literacy remediation; referrals; substance abuse counseling, support groups and transportation to and from appointments.

Tell me a little about the people in your clinic.

Approximately 70% of the neighborhood where the clinic is located is on some form of public assistance. The clinic population is about 30% female, 68% male and 2% transgender (male to female). African Americans make up about 97% of the total, with Hispanics approximately 3%. Each group has their own unique issues.

Are many of your patients immigrants?

No, we don't have a lot of immigrants. We have one person from Mexico, one from South America and two from Puerto Rico.

What do you think are the biggest issues for women with HIV?

A common issue I see with most women is their devotion to taking care of their children. Our female patients are primarily mothers. They take care of their children first and neglect themselves. The age range is between 20 and 56. About 80% have heterosexual sex as their risk factor for HIV. The other 20% have injection drug use as their risk factor. Quite a few are single mothers with mental health disorders.

What percentage of your clinic is on Medicaid? ADAP? Private insurance?

Approximately 55% have Medicaid/Medicare, 42% are Ryan White Care Act patients, and 3% private insurance. All of our Ryan White Care Act patients receive ADAP.

Has your ability to treat people with HIV changed over the years?

My ability to treat people with HIV has changed dramatically over the years. There was so much to learn at the beginning, both medically and culturally -- MSM [men who have sex with men], IDU [injection drug users], SA [substance abusers], racial [factors], etc.

Do you feel people walking into the clinic today feel less stigmatized by the disease?

No, not really. Not in this community. There is still real stigma among African Americans.

Are their relatives more supportive? Do they have more options for support?

Some family members are supportive if the patient has disclosed his or her status, and others will reject their infected family member or be too frightened of contracting the virus through casual contact, making their loved one eat off paper plates or disinfecting the toilet when they use it.

What do you think about all the publicity given to the down low? Do you find that it is a real issue in your clinic?

I think the term "down low" is just a new label for a practice that has been around since the beginning of mankind.

Are you seeing a lot of people testing positive as a result of methamphetamine (meth) use or other drugs?

The drug of choice for our population is crack cocaine, heroin and alcohol. The crystal meth users are primarily on the North Side of Chicago; primarily gay white males. Injection drug use accounts for about 25% of our HIV/HCV patients.

Tell me about the research projects you are currently involved with.

One of our current clinical trials involves looking at the efficacy and safety of a fixed dose antiretroviral therapy and another is looking at the relationship between hepatitis C and growth hormone in patients with HIV wasting syndrome.

How many years were you in the army? Where were you based and how did this experience influence your life?

I was in the army for seven and half years. I was stationed in Alabama, Texas, Kentucky and Tennessee. I also spent three years in Frankfurt, Germany. It was a great experience living in different states, especially in the South. Living in Germany was probably the best experience because I was learning a new culture and language.

What is the biggest challenge you face?

The biggest challenge I face is taking care of people with reduced resources, such as federal funding. I see patients paying so much for their medication that they can't make ends meet. The Illinois AIDS Drug Assistance Program does not cover non-HIV medications such as antihypertensives, oral hypoglycemics, statins, etc. The need for these medications is mostly related to genetics and adverse drug events from HIV medications. It is also a big challenge trying to educate that -- without exception -- everyone is at risk.

What do you think the biggest problem people with HIV face?

Because of the way HIV is transmitted, it carries a negative stigma that is applied to everyone who has it, no matter how they got it. It isn't necessarily their fault, but as a result of their illness they are blamed for society's ills.

Do you think that prevention efforts are sufficient?

I just finished a training session for health care professionals, and prevention efforts arose as a troubling subject to many of the attendees. There are many articles written about the epidemic saying that prevention efforts aren't working. I recently saw the movie The Gift. After the screening, the movie producer lambasted the HIV prevention efforts made thus far in the epidemic. I would ask people to examine prevention efforts in other chronic illnesses. Have we prevented diabetes or obesity? Are those efforts working? I don't think we should be condemned for the HIV prevention efforts we have made so far.

What change would you like to see in healthcare?

I was always interested in integrating medical care with prevention, and that change is becoming increasingly common (that's a good thing). Also increased funding/resources for persons infected with HIV.

What do you provide in terms of education or counsel?

Patients need positive reinforcement when they do well, such as taking their medication. A new diagnosis needs to be followed up with support to prepare the patient to be ready to take medication for the rest of their lives.

What's the key to a great healthcare provider/patient relationship?

The relationship has to be collaboration based on trust and respect. The goal for the provider must be to help the patient have a better quality of life. The healthcare provider needs to listen and include the patient in the decision-making process.

If you became infected with HIV, at what T-cell count would you begin treatment?

I use the DHHS treatment guidelines right now. It would depend on how the patient was feeling, in concordance with the guidelines and past experience. I would tailor it to the patient's lifestyle. I would make sure I wasn't prescribing any medications that had side effects that would interfere with the patient's lifestyle.
"I think the term 'down low' is just a new label for a practice that has been around since the beginning of mankind."

What is your view on patients taking a proactive role in their own treatment?

The more knowledge they have, the better they are able to consider the pros and cons of each decision. I encourage questions from my patients because I feel it is important to their care. Some patients go further than others and bring in news articles, etc. They get them from everywhere -- online, newspapers, magazines and journals. I appreciate that they have the curiosity to question things and not take everything they read as truth. Patients also join advocacy groups. I have patients who have joined the Chicago Area HIV Planning Council, a program of the Chicago Department of Public Health STD/HIV/AIDS Division, which is wonderful way to help their community by taking a role in planning and allocating funding for services.

Can you explain what this planning council does and what the patients have to do?

The mission of the Chicago Department of Public Health, Division of STD/HIV/AIDS Public Policy and Programs is to work in partnership with the community to use the best public health practices for the prevention and treatment of HIV and sexually transmitted diseases (STDs) and to promote the highest quality services for the health and well being of those living with and impacted by STDs, HIV and AIDS. The planning council members are appointed by the mayor of Chicago and are composed of persons living with HIV from the community and healthcare providers in an ethnic/racial balance that reflects the epidemic in Chicago. The council meets monthly to discuss issues regarding funding, policy making and the yearly budget prioritizing meeting for the upcoming fiscal year.

Do you have a favorite patient?

I just love all my patients. It is really difficult for me anytime I lose a patient.

If you weren't a nurse, what would you be?

If I was younger, maybe I would be a gymnast. I never had the opportunity to take gymnastics as a child because I didn't know about it and it was not offered at my school. If I had had the opportunity to practice, I could have been good. I could also see myself as a florist, because I love flowers and plants and digging in the dirt. I could also see myself as a doctor. Before I went to nursing school I was a biology major, but I decided that I was more of a people person.

How do you keep from burning out?

I pray and take vacations. You have to take vacations when you do this kind of job -- it makes you physically and mentally tired. If you don't take care of yourself you won't be able to take care of anyone else.


Is there anyone you would like to dedicate this award to?

There are two people I would like to dedicate this award. Charles Clifton. Before his death, he was an HIV advocate who ran a Chicago AIDS organization called Test Positive Aware Network. The organization does training, organizes support groups and puts out publications. He was a loving, giving man who couldn't do enough for the community. Last but not least, my mentor, Dr. Sherry Luck who founded the Luck Care Center with her own money before we had Ryan White Care Act dollars. She was a phenomenal woman in every way.


Do you have a favorite vacation?

I go anywhere where there is water and warmth. I like reading, swimming, snorkeling, hiking, kayaking and lying on a chaise looking at the water -- that's my favorite. Last year we went to Barbados. It is a long flight from Chicago, but its beaches are beautiful and the people are so nice. There was a really nice fish fry that all the locals go to. I was very excited to go to Bathsheba in Barbados; it is one of the best places to go surfing in the world. It has a beach that curves around from both sides and inside the soup bowl is where surfing is best. Also I loved Aruba, Cayman Islands, Jamaica and Puerto Rico.

Where are you from?

I'm originally from Lansing, Michigan. I went to Chicago following some cousins. It seemed like when all my cousins turned 18 they went to Chicago, so I followed them and then my sister followed me.

What is your family like?

I'm married with three kids, ages 19, 12 and two, and we have a dog, a Chinese Sharpei, he just turned 13. My 12-year-old takes great pride in being the big brother. He doesn't do diapers, but he helps with everything else -- getting my daughter in a high chair, playing with her, dancing, watching Blue's Clues on television with her. The baby wants to follow him everywhere.

What is your community like?

Oak Park is a diverse community nationally recognized for so many cultures (racial, ethnic and sexual) living in harmony. There are a lot of families here, and I thought it would be a good place to raise kids. There are also a few Frank Lloyd Wright houses, and quite an influx of tourism because of them -- a few of the houses are museums. Oak Park is close to the city, just seven miles.

What kind of books do read?

I'm a big reader. I read everything -- work-related magazines, mysteries. I read romance novels, but those are just trashy escapism.

What did you want to be when you were a child?

I wanted to be a dentist, because I was fascinated by my dentist. In high school, I even took a dental course. In 1979, I finally said being a nurse is what I want to do. It is still evolving ... I still don't know what I want to be when I grow up.