In considering whether Memphis could implement a plan to end AIDS, I believe it is best to hear the voices of the community. When advocates and stakeholders were asked if they believed that we could end AIDS in Memphis with a plan similar to the one being proposed in New York State, each responded affirmatively, but expressed a number of challenges that would have to be addressed for that goal to be accomplished here.
Marvell Terry, Executive Director of The Red Door Foundation, said:
I believe targeted testing has increased since the implementation of the National HIV/AID Strategy, but we must not let up. Testing should not just be limited to banking hours. How can we offer testing or PEP (see "A Magic Pill to End AIDS?" in this issue) when [someone says] I have just done something that put me at risk for HIV? I may want to get tested Saturday morning before I go to the car wash because I work during the week when most testing services are offered. Where do I go? What do I do? We have to begin to think outside of the box. But with expanded and increased testing we also need more resources and funding to care for more people who know their HIV status.
Similarly, Dr. Martha Ballard, a physician at Complete Healthcare Center, emphasized:
Rather than focusing testing in the areas which have a high incidence of HIV, agencies should focus on making testing available in places where there are large numbers of people. HIV testing should be a part of standard protocol in doctors' offices, and we need increased funding to make testing available at more providers.
To date there are only a handful of agencies funded in Memphis to provide testing in certain zip codes. This creates a skewed view of who is at risk for HIV. Programs should be targeting persons who are sexually active, rather than certain racial demographics. We must also ensure that when epidemiological data are published, they are accurately reported. The public should not be given information that misinterprets the facts or misrepresents the issues.
PrEP in the South
A 2013 survey by Gilead, the maker of Truvada, found that half of all PrEP prescriptions (drugs to prevent HIV -- see article on page 14) were for women, and a third were given in the South. But when I asked service providers to name doctors in Memphis who were willing to write PrEP prescriptions, they could only name three. They also had some major concerns about PrEP and PEP and how to integrate their use in the South.
HIV Outreach Specialist Henry Johnson said, "We first need to be able to have a mature conversation about sex in this community. If we can't do that, it'll be very difficult to integrate and promote PrEP. We also need to address substance abuse and mental health in a comprehensive fashion. Last but certainly not least we need to continue to push comprehensive sex education and condoms, and to find resources to address the high cost of PrEP."
Laronia Hurd-Sawyer, Executive Director of PEAS (Partnership to End AIDS Status) says:
Providers must consider an age-appropriate, continual, and flexible approach to PrEP and PEP. There are major barriers to accessing programs that target youth in Memphis. Most of the rules that govern these programs prohibit working effectively with this population across the board. Currently, there are rules that do not allow youth to access housing, food pantries, and other services, even when they are emancipated. So they end up in relationships with older adults, selling sex for housing or tolerating domestic violence in exchange for housing. We have to develop programs that help them change their behavior instead of focusing on stopping behaviors. We must partner with youth -- rather than shoving condoms in their hands, we have to get to the root causes of why they are using sex to handle situations.
According to Marvell Terry:
First, we must educate providers and community-based organizations on what PrEP and PEP are. I hope to accomplish that by being a part of AVAC's PxROAR Program, a program that trains advocates in HIV prevention, research, and advocacy. Secondly, we must get the conversation on the ground and empower high-risk populations to build relationships with their doctors, so they can have an honest conversation about their sexual history. Finally, we must advocate for the expansion of Medicaid in Southern states so that these medicines are affordable.
Entering and Staying in Care
People who test positive need proper treatment. But the advocates I spoke with agreed that people often refuse care because they don't want to have their HIV status disclosed by being seen walking into clinics that only serve people with HIV. Several community members stressed the need to increase the number of providers if clients are to have real access to care.
Dr. Ballard said:
There are numerous barriers to patients accessing and remaining in medical care. HIV stigma continues to play a role, and there are many challenges we face in helping clients adhere to their medications, keep appointments, eat well, exercise, avoid recreational drugs, avoid stress, etc. We as providers must help them take responsibility for their health so they can do what is needed to manage their disease.
Marvell Terry, living with HIV since 2007, added:
One of the barriers to getting people with HIV into care is their fear of what happens after they get their diagnosis. Achieving viral load suppression requires consistency in taking medication. What prevents some clients from achieving this is that they begin to feel better and stop taking the medication. I know this journey all too well.
Helping providers deal with their personal biases and learn the skills necessary to provide quality care and meet the psychosocial needs of their clients will decrease barriers tremendously. We also need to address "clinical inertia." Providers can become comfortable with patients being nonadherent to their medications or missing appointments -- they no longer encourage the patient to do the work needed to stay healthy.
According to HIV Educator Jennifer Warren:
People go to the doctor and they may receive marginal or sometimes poor care. They are usually herded in and out like cattle. There are few providers and very long waits. This causes " fall-outs" with their doctors -- yes, people are put out and can be uncooperative, especially if they have mental health issues. Additionally, many people have poor support systems, including a lack of self-empowerment and trouble adjusting to a new life with the virus. Many times, providers and case workers assume that people with HIV understand things because they say "Yes" when questioned or parrot the jargon they've heard. In fact, they have a flawed understanding of what is said or what they're asked.
There can be a great disconnect between doctor and patient. Too often, doctors forget that people grow tired after being in care for a while, so we need to find ways to help them stay in care and continue to make healthy choices over long periods of time. Providers assume that people will do what's right because it's good for them. But often that isn't enough.
Another challenge is mistrust and skepticism of medications and doctors. Many people here have negative perceptions of doctors. They don't believe doctors have their best interests at heart and so have difficulty listening to their advice. We need to equip clients with the skills they need to select good doctors and to build productive relationships with them. One newly diagnosed client of mine was "not interested in the free government-funded programs" that offer medical care and browsed the provider list looking for a place with a "good name." The assumption was that "only poor Black gay people go to those Ryan White clinics, and they get substandard care." She wanted to go to the place she selected or to a private doctor.
Stigma plays a big role in HIV care. A study by Vanderbilt University in rural Tennessee found that three main themes emerged regarding HIV stigma:
- Negative attitudes, fear of people with HIV, and misperceptions regarding HIV transmission
- Discrimination by families, friends, and medical staff, and in the workplace
- Self-isolation as a coping mechanism to limit exposure to negative reactions
While Memphis is a large metropolitan area, many people here use the same coping mechanisms. People shy away from care and support services as a way to avoid the stigma associated with AIDS. They may use herbs and vitamins instead of getting traditional care, they may deny their HIV, or they may be in hiding, not to be found until they become sick.
Reaching Men in the South
Community volunteer Kirrik Sanders stated:
We have to be willing to better address the heterosexual Black male if we are going to end AIDS in Memphis. We can't afford to keep leaving their input out of the plans to end the epidemic. To continue to do this lets them continue to assume they are no longer at risk. We must also consider HIV prevention for those who are incarcerated or recently released. There are so many people in and out of jail. There needs to be a special team brought together to figure out how to increase testing and how to make condoms available for people having sex inside the jails. Waiting for a person to be released and then giving them condoms and an HIV test is way too late.