Is South Carolina Truly PrEP-ared?
Video created by Jaysen Dante via Adobe Spark
COLUMBIA, SC (Mar 22, 2017) — South Carolina ranks as one of the top 10 states with newly diagnosed HIV and AIDS cases in the nation. From the scope of the numbers since 2013, the rates continue to rise or remain stagnant despite new research and advances in treatment and prevention.
In 2004, advances towards HIV treatment made a huge step forward as medical approval of testing for the drug Truvada released in the United States. Also known as a pre-exposure prophylaxis drug (PrEP), the medication became the first advancement in the 21st century in the battle against the HIV/AIDS epidemic. Studies show the drug gives a promising future towards finding the cure for the virus, but the backlash involving the drug also places an obstacle on its timeline.
In 2016, according to AIDSpan.org, the United Nations General Assembly signed a political declaration to accelerate the fight against the virus and end the epidemic that has taken the lives of millions worldwide by 2030. PrEP is on the fast track of helping that happen. However, the education, especially in Southern states such as South Carolina, is difficult considering the oppressive backlash from groups such as religious organizations and medical groups that are uncertain of the benefits of the medication.
The Basic Facts
PrEP is an oral medication containing a combination of antiviral medicines used in preventing HIV cells from multiplying inside the body, therefore, spreading the virus. While it is not a cure for HIV or AIDS, it aides the body in treating the virus from spreading and preventing others from being infected.
While there are nearly 5 million residents in South Carolina, there are on average over three deaths per 100,000 people in the state, higher than the national average of just two deaths. Nearly 70% total cases are from men who have sex with men and 28% of new cases come from gay and bisexual men annually. Black men in the state are nearly 7 times more likely diagnosed with the virus over white men. While that is shocking, the numbers nearly double for black females over white females.
This goes to show that the problem is not just amongst the LGBT community, which was the primary stigmatized target during the initial outbreak of the epidemic in the 80’s and 90’s, but it also shows that this is a problem regarding proper sex education amongst minorities as well. As the numbers rise for unwanted pregnancies amongst minorities, especially in urban communities, the numbers also increase greatly among individuals with diagnosed sexually transmitted diseases, especially HIV and AIDS.
According to the Journal of the International AIDS Society, the concerns (as of 2016) began to fade with the vast amount of research released to the public throughout the year. Starting in 2008, studies showed a 42% decrease in HIV infection amongst men who have sex with men, especially if individuals take the drug daily. The New England Journal of Medicine did a study in 2015 of what they considered “on-demand” PrEP, meaning the individual takes the medication 2-24 hours prior to intercourse and only continued the medication up to 48 hours after sexual activity. The studies done in France and Canada showed an astounding 86% reduction in HIV risk out of 400 gay men tested during the nine month testing period.
While the reduction rates for men show progress, research studies remain in effect for the reduction of the virus amongst women. Some studies conducted in several countries show ineffective results of the drug preventing transmission of the virus in women. While many women – over 80%, to be exact – contract the virus through heterosexual intercourse, many factors such as birth control and other feminine medications cause adverse interaction among women, making PrEP useless for them. However, there are several people, men and women alike, who agree that the prevention drug should be available universally.
While there have been a couple of reported counts of HIV transmission towards individuals taking PrEP, the risks overall have been very low.
Common side effects for those who regularly take the medication include headache, abdominal pain, nausea, diarrhea, and decrease in weight and bone density. The major side effects, yet rare, include lactic acidosis, liver dysfunction, and an increase in exacerbation of Hepatitis B infection. This makes it important for medical officials and doctors to know whether an individual also has a liver condition, heart condition, or Hepatitis B. However, consumer reports show rare cases of these side effects since initial research a few years ago.
While there are many people hearing through word of mouth about PrEP, it is not coming from their doctors. Instead, the consumers are educating their doctors and medical professionals about the drug.
For instance, James Carpenter, a Columbia, SC native and PrEP advocate, studied and started using PrEP since 2014. He retrieved his information through the Internet about the newest advancement. Unfortunately, he did not find the same extensive information coming from his doctors, who knew of the drug, but did not know enough to inform patients about the advancement.
“He was sort of remotely familiar with it. He knew it existed, it had positive ideas about it, but he didn’t have details,” Carpenter states. “I had to really educate him and I’m sort of hearing a lot of people with the same experiences that they aren’t getting information from their doctors to make an informed decision. They have to make the decision for themselves.”
Carpenter searched through websites on the Internet, such as the Center for Disease Control and Prevention (CDC), to get his information. He also joined a Facebook group, PrEP Facts: Rethinking HIV Prevention and Sex, founded by Damon L. Jacobs, a licensed psychotherapist, marriage and family counselor in New York. Jacobs, like Carpenter, is also a strong advocate of PrEP and has been one of the mainstream voices in the nation regarding education of the advancement.
“I began using it myself in 2011, started publicly speaking about this in 2012, and really helping doctors, nurses, and consumers and media try to understand and comprehend the large picture – the opportunity we’re facing for the very first time in the 30 plus years we’re dealing with the HIV epidemic – to understand the opportunity that awaits through PrEP,” Jacobs states about his mission and focus in PrEP advocacy.
PrEP quietly made its way towards FDA approval as early as 2011. Even though the results were shockingly positive and effective, very little fanfare came from the presentation of the research, resulting in a slow start for the HIV prevention drug. Jacobs, as well as several other advocates, learned more about it through the Internet, printed out their research, and headed straight to their local clinics and primary care providers to prescribe to the pill. Unfortunately, it turns out the doctors were the ones with very little information about it.
Ryan Wilson, LGBT activist and PrEP advocate currently residing in Houston, Texas, went through a similar experience with his introduction with PrEP. He too heard from a friend about the advancement and gathered research to take to his healthcare provider. Like Carpenter and Jacobs, he also got the same result from his doctor – a lack of knowledge and detail on the drug.
“Oh gosh, there was almost nothing available in South Carolina that was really out there!” Wilson declared. “I actually had to go to the CDC’s website, print a bunch of stuff off and take it to my doctor because he wasn’t aware of what it was when I first asked for it.”
The Educational Dilemma
Much of the public in major metropolitan areas in areas such as the Northeast and the Pacific were receiving huge support, marketing and education from nonprofits and medical organizations of PrEP. However, less populated and rural areas, especially in the South, either did not receive the education or practically turned it away.
Several doctors and individuals in the South either were not aware, did not recommend or even did not approve of their patients using PrEP, especially when the primary marketing target of the drug was towards men of color, trans men, sex workers, and gay and bisexual men. Instead of the advancement introducing an opportunity of responsibility and relief in a positive and healthy lifestyle, many individuals sense social issues lying in the surface about the drug.
“I definitely think that there should be more education about it. The one area where I see there is less education going on isn’t so much targeted at consumers, [but] it’s more so a lack of education of doctors themselves,” Wilson stated. “I don’t know of anyone that’s really doing seminars and education for individual practices [and] medical providers across the country so they can get the information and recommend it to their patients.”
The answer lies in the fearful possibilities that naysayers believe the drug will induce into society. Organizations such as the AIDS Healthcare Foundation promoted the pill as a “party drug”, declaring that it promotes promiscuity and irresponsibility amongst at risk communities, especially the LGBT and African American communities. Not only is the stigma of providing trust towards a medical professional about their sex life, but also the fears arise about how doctors and also public peers will view them as users of PrEP. The stigma even introduced the infamous “Truvada Whore” term coined by a journalist a few years ago.
“You know, sometimes in the South, what I’ve been told, is that you get the finger pointing or you get the thing like ‘Well, that’s only for sluts’ or ‘That drug is only for promiscuous people. That’s not you, is it?!’ Jacobs explained about stories he heard from clients and friends in the South. “It’s such an inappropriate way to conduct medicine because that’s not medicine, that’s morality.”
Statistics, however, show that the majority of people actually want to take a drug like this and protect themselves.
“Because of PrEP, I have gone to the doctor for STD testing more regularly than I ever did,” Wilson stated. “It forces me to stick to that calendar and also forces me to be more proactive with my health.”
With gay and bisexual men, trans individuals, sex workers and African Americans the highest at risk of contracting the virus, the obstacles set before them in proactively taking the opportunity to protect themselves from HIV with PrEP is high. Due to treatment from some doctors and medical professionals regarding sexual orientation or gender identity, many individuals turn prevention and treatment away, furthering the risk of transmitting the virus.
The MediaSen Group learned from Dayna Smith, a transgender activist in Columbia, SC, in 2016 that malpractice towards LGBT individuals, especially trans individuals, is prevalent in the community when it comes to healthcare.
“Unfortunately we’ve learned that just because someone tells [someone] they can’t do it, that doesn’t necessarily mean they’ll do it right or give the proper and best care for that person,” Smith stated regarding the regulation of doctors treating trans individuals. “It may be minimal or even poor malpractice.”
The virus brought dire fear towards individuals in the 80s and 90s, with individuals worried everyday that any blemish on their skin, flaw on their body, or even the smallest cough was a sign that they contracted it. Unfortunately, the stigma lives on today even with the advances of PrEP and the virus more controlled than ever.
With the lack of support from medical officials, society and the economy, it brings the morale and mental health down for many individuals. Beth Sherouse, Ph.D., an LGBT and minority rights activist in Atlanta, GA, touched on the importance of positive health in the community.
“There is a direct correlation between that [mental health issues within the bisexual and trans communities] and the stigma that we feel within the LGBT community,” she stated.
This is why several advocates and organizations such as the Human Rights Campaign, GILEAD, and ACT UP are working hard in educating and marketing the pill to the public as much as they can, especially in areas where the doctors will not reach out and educate others of the risks of the virus and proper prevention.
“Preventing it is always better than treating it,” Carpenter stated. “We need not just the technical education, but also, like, the social education because there’s a lot of stigmas in some circles around using PrEP and negative pressure against it from some people. That stops some people from pursuing it when maybe it would be their benefit to do so.”
However, LGBT and African American communities are not the only ones affected by the virus. The virus has affected many lives – young and old, man and woman, all races and sexual orientations – worldwide for over 30 years.
The main issue lies upon the proper education of the pill to the public, especially in South Carolina. However, financial and cultural backlash causes difficulties in allowing that to happen. With the possible repealing and replacement of the Affordable Care Act, the drug may or may not be affordable for at-risk individuals to purchase.
“The one concern about PrEP, which I think is very valid, is the fact that it’s used towards those who have the privilege and the means by which to access medical services,” Wilson pointed out about doctors readily prescribing to fully insured patients.
One of the main stigmas of the LGBT community, especially gay and bisexual men, centers on the virus that took so many lives beginning over 30 years ago. Now a number of LGBT men and women see this as an extra layer of protection and method of responsibility for individuals to not live their lives in fear.
Therefore, the solution lies in communicating and networking the research and information to others. Not only gathering the research and support, but also developing the proper resources and funding for the outreach, especially for individuals who cannot afford adequate healthcare. Get involved with family, friends and the community to bring the outreach to at risk communities.
Wilson, Jacobs, and Carpenter all use their stories and daily lives to speak to others, sharing the information and experiences they learned and how responsible and empowered they feel as a result. It is only a matter of time before the PrEP pill becomes just as common as the birth control pill.
“We can do this. It’s not rocket science,” Jacobs declared. “We can do this with the tools we already have.”