The PrEP’s Manifest

For more than four years, the World Health Organization (WHO) has recommended the use of Pre-Exposure Prophylaxis as an effective biomedical intervention to prevent HIV infection. Since then, some leaders and organizations have expressed different positions and reservations about PrEP, or at best avoided their engagement in debates.

As part of the actions of the Quiero PrEP initiative, we´re launching a campaign to promote PrEP access in LAC. Today we´re sharing the «Manifesto sobre la PrEP», with the intention to establish our position and offer arguments to support its acceptability, support and access in Latin America and The Caribbean. Or at least contribute to an appropriate debate on this issue, considering PrEP as a tool with the potential to revolutionize the HIV response.

We will share our position to some of the commonly mentioned issues related to PrEP and share some recommendations underlined:

One of the challenges posed by the discussion, promotion and acceptability of PrEP is the lack of information. It is difficult to give a debate when significant number of participants lacks the basic information on the subject. There is a great deal of information available about PrEP, but most of the knowledge about the issues is concentrated among health professionals (doctors and researchers). Also, there is little user-friendly information and PrEP literacy information in different languages. It is urgent to develop friendly, simple but scientific rigorous communication and information campaigns, in order to ensure the interventions PrEP-literacy, in particular targeting organizations, leaders, decision makers and specially the users.

WHO’s PrEP recommendations, as well as, the approval processes used by major drug regulatory agencies, for example: the FDA in the United States of America, are the result of large body of scientific evidences on its effectiveness. Those are produced by significant number of clinical trials and behaviour studies, conducted during the last five years. In major cities (in developed countries), PrEP is being distributed on increasingly larger scale and we´re witnessing the first evidences (coming from the ground) of an HIV prevalence´s reduction. For the first time in the history of the AIDS epidemic, we´re recording a decrease on the new infection among in Gays, MSM and Trans people. There is a need to improve the dissemination of scientific data to enable community-lead PrEP advocacy interventions.

Some leaders of the LGTTBI and HIV/AIDS organizations have a radical personal anti-PrEP positions, which the symptoms is that they often begins with: «I believe», in many cases nullify the possibility of having a debate and understanding the issues and reservations of a larger constituency. The use of the PrEP is voluntary, and the result of a personal decision. But for debating the policies and programs, we must surpass the personal and testimonial scope, to transform into a collective or institutional position. Institutional positions for or against PrEP must be the result of an informed reflexion within the organization, not on what individuals believes. We call to the leaders to organize informed intra-institutional debates that allow overcoming the personal positions on PrEP.

There is longstanding argument that PrEP encourages a greater number of sexual relations and partners among its users. Occasionally, prejudiced terms in statements and campaigns are used against PrEP users, which appeal to concepts such as «promiscuity», to refer in derogative way to those, who as a result of their active sex life would be eligible for access. There is no evidence in the behavioural studies, that the use of PrEP has increased the number of sexual relations and partners between Gays, MSM and Trans people, compared to the “pre-PrEP” numbers and frequencies. Studies on the use of PrEP shown indications that among those with multiple sexual relations who use it, the prevalence of HIV infection has dropped significantly. The use of moralizing, sometimes a hypocritical narrative to prevent the scale up of PrEP, only helps to create distance with the potential users of the services and organizations that claim to protect their rights. The discussion on combined HIV prevention, and in particular PrEP, should overcome moral judgments and a negative narratives about people’s behaviour.

The indication of the use of PrEP, for now, is recommended together with the correct and consistent use of condoms. However, many people would be using only PrEP and not the condoms. In theory, this should increase cases of Sexually Transmitted Diseases (STD´s). Currently, none of the clinical trial published shows clear evidences and facts of a direct increase in STDs prevalence among PrEP users. The increase in STDs between Gays, MSM and Trans has been documented, in many studies, before the existence of PrEP. In many PrEP subsidized distribution programs, users are required to be tested for major STDs at least between four to two times a year; this will increase the timely diagnosis and treatment of these infections (and the reduction of its transmission). PrEP will increase the access to sexual health. In any case, an STD has significantly lower morbidity, compared to the HIV infection, and most are treatable or curable. Countries must adopt national STI strategies; integrate HIV with STD services, as well as, all the HIV related programs and health centres should provide STD diagnosis and information on a regular basis to all PrEP users.

PrEP is indicated only for people who are HIV-negative. A very high percentage of people living with HIV are unaware of their sero-status; therefore, they do not receive timely treatment, they are more likely get sick and have higher mortality rates, as well as, they more likely to transmit, totally involuntary, the virus. The launch of PrEP programs has significantly increased the number of people who are tested for HIV. PrEP is a tool to increase the number of people who know if they have HIV positive or not, which is also a fundamental health right. If more people are diagnosed promptly and treated immediately, their health will improve and they will lose the ability to transmit HIV during unprotected sex. In order to have a significant impact on the epidemic, there must be a dramatic increase in the access of HIV testing, that allows more people with HIV to be treated immediately and offer combined prevention interventions to both HIV positive and HIV negative people.

Taking any medications will always have some side and adverse effects. At present, most of the professionals who prescribe the PrEP are familiar with those effects and can accompany the users dealing with them. Taking PrEP, in a very small percentage of cases, can generate side effects, which usually disappear in the first weeks of its use. The only way to ensure the absence of side and adverse effects is to not take any allopathic medications, at all. However, there are no any natural or alternative therapies and medications that can be offered the benefits of PrEP. When we reflect on how we could be able to avoid an HIV infection with biomedical interventions, it is worth remembering that people living with HIV should take a larger number of drugs for the rest of their lives. A treatment that’s save lives but come with another set of adverse effects. Also, there´re very low occurrence of resistance to the PrEP drugs, if a user becomes HIV positive. The communication about PrEP should be unbiased and report on the existence of side and adverse effects to its users, as well as training health professionals and prevention counsellors, to be able to recognize them.

 

8. Promote condom use:

Many critics on the PrEP, consider that this intervention gives «a free go» to those who want to stop using condoms. The reality is that they stopped using condoms while ago, and recent data shows that the percentages of Gays, MSM and Trans people who use condoms are consistently decreasing. The studies on condom use capture only what the respondents said, however, studies of greater depth shown a lesser use than what it has been referred by people during interviews. People do and say different things. The PrEP it’s recommended to be used along with condoms and lube, however, those who only use the condom or only PrEP correctly, will still be highly protected. If a condom is not broken or people use PrEP adhere well, together or apart, the percentage of effectiveness is greater than 95%. You cannot «cover the sun with a finger,» the Un-PC fact that people use much less condoms. And that is why every year, in the world, there are more people who becomes HIV positive. All messaging and information about PrEP should include the recommendation for the use of condoms and lubricants, and the availability of condoms should be expanded. We need more research and information campaigns on awareness on people real resistance to use of condoms and targeted support should be promoted, recognizing the reality without judging it.

«PrEP is like contraceptives, no one is forced to use them «. The use of PrEP should be voluntary as result of a personal and informed decision. There are tools, such as self-administer risk calculators and risk questionnaires that allow the self-assessment of risk. Whether in daily or event-based dosage use of PrEP, the individual must commit to minimum adherence to enjoy the protective properties offered. Also, this is a prevention tool that allows its use by individuals, so those people who want to take care of themselves. In relationships with very defined roles, some degree of imbalance in power relations, sexual relations under the effect of drugs or alcohol or some type of coercion, who takes PrEP will never lose control over their prevention (unlike what happens with condoms). It is key to communicate how the use of PrEP is a tool that empower users and give back the control on prevention at the individual level, beyond interpersonal relationships and power dynamics.

It is argued that people will not be adhering with the daily taking of PrEP, or they will not be able to sustain this behaviour over time. This line of thought was used some decades ago to question the large-scale use of antiretroviral drugs for people with HIV; we now know that this was a fallacious argument. Most people with HIV adhere to their treatment, by which we can assume that people without HIV, who use PrEP, will be too. In the meantime, different approaches to the use of PrEP is being rollout, such as the administration of PrEP with even-based dosage, where people would take a certain number of pills before and after sex. Ensuring the success of the PrEP programs includes, accompanying their prescription and provision with (if its possible) the appropriate counselling, information and education to ensure adherence, promote access to sexual health clinics that can support adherence and communication campaigns directed to PrEP users to reinforcement the adherence in social media and recreational places.

People have different sexual behaviours, relationships with one or more people, more or less frequently. It does not matter what people do, but how they do it. Prevention programs that have been aimed at “domesticating desire” and “interfering with pleasure” have failed for the last almost three decades. A significant number of people, who do not use the condom in their sexual relationships, will not disclose this behaviour. There is a strong discrepancy between what people do and says. Sexuality is still a very loaded with prejudices, shame and moral issues. People usually do not talk to their doctors or most friends about not using condoms. The PrEP helps people gain greater protection, regardless of what they do, and says they does. The use of self-assessment risks tools should be promoted and a sincere and unprejudiced dialogue on how people struggle to consistently use condoms should be encouraged. Even so, efforts to increase access to condoms and lubricants should be continued.

It is obvious that the cost of the condom is significantly lower than PrEP, in strictly price terms, now in terms of the health economy. Due to its low use, we can say that the condom ends up being more expensive for people and health systems. The WHO has pre-qualified generics of PrEP at a cost 33 to 60 times lower than the patented product (i.e. between approximately USD 6 to 40 per month). As civil society struggled for ensure access to treatment for people living with HIV, similar actions today are needed to increase access to PrEP for those HIV negative. It is not a matter of taking resources from HIV treatment budgets to direct them to prevention, or vice versa, but of fighting together to universal access to prevention, treatment and care programs based on the evidence and with the necessary budgetary resources allocated. People who «live without HIV» have the same right to access the advances of science, so that they remain HIV negative. We must avoid biased debates that stem from the notion that governments fulfil their obligations, by providing only a few condoms (theoretically cheaper than PrEP). This has been the main challenge to contain the epidemic. It is also argued that PrEP is a big business for international pharmaceutical companies. No doubt, patented and selling a new scientific development is a very good business for the industry, but it is our responsibility to put pressure to our governments to buy affordable generics and for a greater transparency to avoid corruption. It does not require much financial knowledge to understand that companies find it «better business» in treatment schemes for PLWH than in prevention. We call for an advocacy movement to promote access to affordable PrEP for those who need it (are eligible), and people living with HIV and their organizations must join in with these efforts.

In the absence of a cure or a vaccine, there will be a day, perhaps not far away, in which we witness how entire territories reduce the prevalence and circulation of HIV, especially among key populations. With more people accessing all combined prevention interventions, in particular: 1) that people with HIV have access to diagnosis and immediate treatment, (with the secondary benefit of reducing the transmission of the virus). 2.- that people without HIV have more access to condoms and PrEP. This context is possible, not only will the virus have fewer opportunities to circulate, less ability to settle in our bodies, and therefore to infect. It will be, for now, the closest we will be to the control and eradicate this epidemic, saving more lives, as well as reducing the stigma and discrimination that fuels the virus transmission. Probably will no “ends AIDS” but will get as close as possible to this.

You can join:

• Supporting by signing the manifest in this link.

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• Accompanying us in other actions we will undertake from anytime

For more information about PrEP in Spanish visit www.quieroprep.org or follow us on Twitter at @quieroprep