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Accessibility To Sexual Health Resources Among Diverse Populations

Accessibility To Sexual Health Resources Among Diverse Populations

By Steph Auteri | From the October 2015 Issue

This past July, the New York Times reported on the success of a six-year experiment that took place in Colorado, in which long-acting forms of birth control—such as intrauterine devices (IUDs) and hormonal implants—were offered for free to teenagers and other women in lower income brackets.

According to the Colorado Department of Public Health & Environment, and thanks to what came to be known as the Colorado Family Planning Initiative, more than 36,000 IUDs or implants were provided to low-income women at 68 family planning clinics across the state. Because of this, the birth rate among teenagers across the state dropped by 48 percent between 2009 and 2014, while the rate of abortions has also dropped by 48 percent.

Commenting upon the impact such a project could have in the long term, Isabel Sawhill, an economist at the Brookings Institution, told the New York Times, "If we want to reduce poverty, one of the simplest, fastest, and cheapest things we could do would be to make sure that as few people as possible become parents before they actually want to."

At about the same time, the donor behind the initiative in Colorado also funded a study in St. Louis, MO, which came to be known as the Contraceptive Choice Project. This multi-year study of almost 10,000 women found that when health care providers offered women all forms of contraception for free, 75 percent chose IUDs and hormonal implants. The results of this project were detailed in a paper co-authored by Jeffrey Peipert, M.D., Ph.D., a professor of obstetrics and gynecology at Washington University in St. Louis who was the Principal Investigator of the study.

The results of this study, and of the Colorado initiative, were no surprise to Peipert, or to Greta Klinger, the family planning supervisor at the public health department in Colorado. While the failure rate for the popular and well-known birth control pill ranges from about five to nine percent, by contrast, the failure rates for implants and IUDs are less than one percent. In fact, the IUD and implant are twenty-fold more effective than pills. This is because, unlike the pill or other birth control options, such as the diaphragm or condoms, they do not require a woman to take action in order to work.

So why aren't these long-acting reversible contraceptives (LARCs) more widely used? In "Game Change in Colorado," Klinger wrote that access to LARCs are often hindered by financial and knowledge barriers.

"I think cost is usually the primary barrier," says Klinger. IUDs, for example, can retail for more than $800 each. "I think you see it from both the patient and provider perspective," she says. "Clinics are required to offer services on a sliding scale. Before the additional funding we provided them with," says Klinger, referring to the money dedicated to the initiative, "they often couldn't provide resources like IUDs and hormonal implants. It just was not in their budget."

Happily, initiatives and studies aside, money may cease being such a huge issue, at least in terms of IUDs, because of Liletta, a lower-cost IUD developed by Medicines360, an organization dedicated to increasing access to women's health products. Clinics can now procure this particular IUD for as low as $50 each.

"We'd love to see a low-cost implant as well," says Klinger. She explains that implants are more popular among teenagers and women in their early 20s because it can be easier for teenagers to think about three years ahead (the amount of time for which an implant is effective) versus the five or 10 years an IUD can sometimes be in use (though IUDs such as Liletta are only approved for use by the FDA for three years, after which removal is recommended).

As for knowledge, Peipert recommends organizations like the Association of Reproductive Health Professionals (ARHP) and Planned Parenthood as excellent resources for those who want to learn more about the various birth control options that are available, and which might be best for them. He mentions that, in the past, IUDs gained a bad reputation because of the Dalkon Shield, an IUD developed in 1971 that led to a number of health issues in women, including infections, infertility, ectopic pregnancies, and even death. This eventually led to greater oversight of medical devices by the FDA, and improved products, but the pall left by the Dalkon Shield lingered and, once the popularity of both condoms and the birth control pill exploded, IUDs faded in the public consciousness, thought of—if at all—as an archaic part of our sexual history.

Happily, projects such as the Colorado Family Planning Initiative and the Contraceptive Choice Project have been gaining steam in the media, spreading the good word about LARCs and their increasing accessibility.

But knowledge and finances still remain as monolithic barriers when it comes to accessibility of other types of sexual health resources. As one example, there's PrEP.

PrEP, which is short for pre-exposure prophylaxis, is a daily pill for people who do not have HIV, but who are at substantial risk of contracting it. To prevent HIV infection, one can take this pill (brand name Truvada) every day. According to information on the Centers for Disease Control and Prevention (CDC) website, when taken consistently, PrEP has been shown to reduce the risk of HIV infection in people who are at high risk by up to 92 percent.

Unfortunately, PrEP is still not a resource many people know about, especially among the communities who could use it the most.

Jim Pickett, Director of Prevention Advocacy and Gay Men's Health at the AIDs Foundation of Chicago (AFC), speaks of how his organization has tried to help combat the usual knowledge and financial barriers to resources such as PrEP. "We've long supported research advocacy into vaccines, microbicides, PrEP... any non-condom options that can prevent HIV," says Pickett. "Once PrEP was approved by the FDA in 2012, we immediately started doing trainings for the HIV workforce in Chicago, getting them up to speed on what PrEP is and how it's used and where you can get it. We've disseminated information about various access plans companies like Gilead have. We've been doing analysis for all the marketplace plans for coverage, so people understand how different plans cover PrEP and PrEP-related services."

"Another key thing we do is run the Chicago PrEP Working Group, a network of more than 100 members who represent research, advocacy, education and clinical work in this area," says Pickett. "Everyone around the table is interested in figuring out ways to share information and make sure we're working together collaboratively to improve awareness of PrEP."

Mitchell Warren is doing similar work as Executive Director of AVAC (formerly known as the AIDS Vaccine Advocacy Coalition). For 20 years, AVAC has been doing advocacy work around developing and hopefully delivering a variety of HIV and AIDS prevention options. At the moment, the organization is focused on answering the question of how they can ensure people at the greatest risk of HIV get access to PrEP.

According to both Pickett and Warren, knowledge and awareness seem to be the greatest barriers to getting PrEP into the right hands. "Awareness is still low," says Pickett, "especially in populations who can most benefit from PrEP, such as trans women and young, gay black men, where the rate of HIV is very high."

Pickett sees this as a problem that starts early in life, with the lack of standardization in the area of sexuality education. "The quality of someone's sexuality education impacts how they access and think about decisions around sexuality," says Pickett. "If you haven't had good sexuality education, you're not in the best place to prepare to think about sexual health in general."

"We have in the works a citywide PrEP social media marketing campaign to improve awareness," says Pickett. "We're targeting young gay black men, trans women, African American cisgender hetero women... all populations with higher or concerning rates of HIV that could benefit from a prevention option they can control.

Warren points out that the majority of people who have an awareness of PrEP at the moment are those in the research community whose work is focused on HIV and AIDS, and those advocates who follow HIV research. "There have been articles in the New York Times," says Warren, "and in professional journals, and in publications directed at people at great risk of HIV. But an overall knowledge that a daily pill exists that can reduce the risk of HIV dramatically is still not widely known."

"I am amazed by the limited knowledge, especially among heath care workers," says Warren. "The scientific community knows. But the policy making community needs to know. And health care providers. We have this paradox. Who knows about the science of PrEP? HIV-treating doctors. Who needs to know about PrEP? The HIV-preventing doctors. We have this paradox where people who need PrEP the most—those who are at the greatest risk for HIV—are not likely going to access the providers who are most knowledgeable about PrEP." Warren insists that advocates need to do much more to ensure that at-risk individuals know it exists and know to seek it out.

Another problem Pickett sees is in the stigma such a resource might have among the general population. "We can look to the advent of birth control pills and see a lot of similarities," says Pickett. "When the Pill was first made available—and still to this day—there was a lot of shaming around it, and the hysteria that women were going to turn into reckless, wanton sluts. People thought the Pill would lead to the downfall of the family. And the dialogue around birth control still isn't much different."

"There continues to be a lot of shame about sex," continues Pickett, "and a lot of fear and stigma about HIV. So this shame and stigma gets attached to this preventative. It's not unlike the birth control debate. Shame and morality get wrapped up in it."

AASECT's position on sexual health and sexual freedom is that sexual activity is healthy if it's ethically conducted, freely chosen, individually governed, and free from undue risk of physical or psychological harm. The organization believes that all individuals should be supported in seeking and finding opportunities to pursue a healthy and happy sexual life of their own choosing. But the rest of the world doesn't necessarily feel the same.

"At the end of the day," adds Warren, "we're still talking fundamentally about an epidemic driven by sex and drugs. Those issues make it very hard to overcome stigma. Those people who are at the greatest risk of contracting HIV and who could benefit... those individuals are the most stigmatized and the most criminalized and the most outside of care. It's not that we're not paying attention. This really gets to the heart of a very complex conversation. PrEP is not just a pill. PrEP is really a comprehensive program that includes talking about sex and risk, and that is still very hard. This is not just some quick fix pill. This is an ongoing behavioral intervention. And many people who we know are at the greatest risk because of reported behaviors don't think they're at risk. Self-awareness of risk is really complicated."

And then there's the omnipresent money issue. "A lot of people don't know how to use their health care plans," says Pickett. "People have trouble understanding premiums, deductibles, what's in-network, what's out-of-network, what tier the drug falls on. If you have a plan with a $6,000 deductible, for example, you have to understand that you need to meet that before you have coverage. Now think about having to suddenly pay for a pill you take every day, with ongoing doctor visits. Six thousand dollars is a huge outlay, and who has that available to them? People need to learn how to pick the insurance that's going to be a good fit for them. And even at the time when they're choosing insurance, they may not have PrEP in mind."

Warren points out, however, that no prevention intervention is cheap or easy or free, but that preventing infection is crucial. While the standard price for a year's supply of PrEP is $14,000, Warren says he doesn't know of anyone who actually pays that amount. "People are getting it through public health programs, or for free through demonstration products," he says. "It's covered via insurance. Gilead, which makes Truvada, has a program for people without health insurance. There are medication assistance programs you can apply for through Gilead, and get a free supply of PrEP. There are many such programs."

AVAV keeps a website—prepwatch.org—that contains links to providers who offer access to PrEP at a reduced cost, or even free. In most cases, it's not free, "but it's very cost-effective," says Warren. "It's cheaper than becoming infected and ending up taking other pills and other medications for the rest of your life."

Pickett hopes the cost of PrEP will one day drop. At the moment, it's the only non-condom option out there. But he hints at a lot of other options that are coming down the pipeline, such as microbicides, implants, patches, and other types of prevention technology. "Once we have more options," says Pickett, "things will be priced differently. It will create this downward pressure to make things more affordable. We're committed to developing multiple things that can fit into people's lives in different ways, which will make people's options more equitable. It's a long-term game."

The LARC-related studies and initiatives, and the continuing advocacy for PrEP, are just two examples of what continues to be a complex issue around accessibility to sexual health resources. Pickett sees similar issues with access to HIV testing and treatment.

"It's not always about the money," he says. "It's about recognizing the fact that you need to be tested. That you might be at risk. That you might be vulnerable to this," he says, echoing Warren's concerns about PrEP. "A large number don't know their status," says Pickett. "And once you become positive, how you access the health care system is so often out of your control. Often, the barrier people come up against is the choice they have to make: 'do I pay rent or do I go to the doctor?' Matters of survival are always going to outweigh something that might happen in the future." 

"I think certainly just knowing how and where to access services is huge," says Klinger. "And knowing and understanding more about how your body works and being able to recognize signs of what's normal and knowing when to seek services is a big piece. Unfortunately, with tons of people, women especially, there's so much they don't know. And that's hard."

"I think certainly sexuality education in schools plays a part, positive or negative, depending upon what's available," continues Klinger. "But I also think we as a society are inundated with sexual innuendos and sexual images. It's everywhere but, at the same time, we're very puritanical about what we will and won't talk about."

Warren agrees, saying that it's about "the much harder work of building comprehensive sexual and reproductive health programs that provide a range of product options in the context of a safe, comfortable environment in which to have those conversations. This is an area where we as a global community have been slow to respond," says Warren. "I've seen it with STIs. I've seen it with contraception. For a long time, I've seen a skittishness and a reluctance to address core issues with human sexuality."

And so, access to sexual health resources continues to be a complicated issue. As recently as September, the media reported that the founder of Turing Pharmaceuticals, a biopharmaceutical company in Brooklyn, had purchased the rights the Daraprim, used for treating toxoplasmosis, and raised its price from roughly $13.50 a pill to $750 per tablet.

At the same time, there are glimmers of hope. Thanks to recent legislation, for example, women in California and Oregon will now be able to buy hormonal birth control at the pharmacy without a doctor's prescription.

And PrEP itself received a recent signal boost. According to an article on BuzzFeed News, a site that has only exploded in popularity over the past few years, the World Health Organization announced a change in its HIV treatment guidelines that promotes the use of antiretrovirals such as PrEP.

Having this information so widely broadcast to health care providers and users alike will only improve our chances of toppling the barriers to access that have stood strong for so long.

(image via Flickr)

"The quality of someone's sexuality education impacts how they access and think about decisions around sexuality," says Pickett.