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Preparing for PrEP: Facts - PrEP UK

Advancing Access to PrEP Treatments In The UK


Preparing: Facts to Know Before Starting PrEP

You've probably heard a lot about PrEP, the new daily pill that can protect HIV negative people from contracting HIV. This guide can help you find out how to get access to this exciting new HIV prevention tool and tell you everything you need to know before starting PrEP.

PrEP and Doctor Visits

Starting PrEP means not only taking a pill every day, but also going to the doctor every 2-3 months for check ups and blood analysis. If you receive PrEP as part of a clinical trial, you will likely be required to have more frequent doctor visits. If you do not have health insurance or a regular doctor, you may be able to get PrEP counselling from a local community health center.

Before starting PrEP, you will need to get an HIV test, particularly one that tests for the RNA of the virus itself. Rapid HIV tests look for HIV antibodies, which can take months after infection to develop, and it is vital to be 100 percent sure that you don't have HIV before starting PrEP because you will otherwise need different medications.

If you test positive, know that HIV is a manageable infection, and you will likely live a normal, healthy life as long as you get the right kind of treatment. Once you are sure that you are negative, you are ready to begin PrEP.

Your doctor may want to see you more frequently when you first begin PrEP to monitor for side effects. Most side effects associated with PrEP, such as nausea, are minor and go away within the first few weeks of taking the drug, but it has been known to affect kidney functions in some patients. This side effect carries no overt symptoms, so it is vital to get a blood analysis. You also need to continue getting tested for HIV every three months to make sure PrEP is working for you.

PrEP and Condom Use

Clinical trials have demonstrated that taking PrEP correctly every day can reduce your chances of contracting HIV during sexual intercourse with an HIV positive person up to 99 percent regardless of condom use. Unlike condoms, however, PrEP does not provide protection from pregnancy or other sexually transmitted infections like syphilis and gonorrhea. Many people struggle with consistent condom use for a variety of reasons, and PrEP was developed to give people another option to protect themselves against HIV. Many people on PrEP choose to continue using condoms to give them peace of mind; ultimately, the decision is yours.

Contracting HIV While on PrEP

If you take PrEP every day, then you are very unlikely to contract HIV; however, if you regularly forget to take your pill, you can still become infected. If you test positive for HIV while on PrEP, you can still live a healthy, normal life, but it is vital that you get additional treatment to prevent HIV from progressing to AIDS. If you do not have a regular doctor, ask the person who tested you to help you find a local infectious disease clinic or a primary care doctor who specializes in HIV.

PrEP, Pregnancy and STIs

PrEP does not prevent pregnancy, nor does it prevent transmission of other STIs, so PrEP users should also regularly get tested for gonorrhea, chlymydia, syphilis and other STIs. Studies on pregnant women using PrEP have shown no risks of birth defects, so it is believed that PrEP is safe for pregnant women.

How to Know if PrEP is Working

Most people don't feel any different after starting PrEP. The only way to be sure PrEP is effective is to continue getting tested for HIV.

Never Share Medications for PrEP

PrEP is composed of two antiretroviral drugs that have been in use for years. For this reason, some people wonder if it's OK to "share" medications with an HIV positive person. Sharing medications is never a good idea for either patient. HIV positive people must take their medicine every day to keep HIV from becoming AIDS, and PrEP must be taken every day to effectively prevent transmission. You must get your own prescription for PrEP.

Talking to Your Doctor About PrEP

Many people feel uncomfortable talking to their doctor about sex, but your doctor's job is to help you make the best decisions for your health, and they can't do that unless you are able to speak openly and honestly with them. Doctor's have heard it all, and patient privacy protection laws prevent your doctor from telling anyone about your personal life. You can mention that you've heard about PrEP on the news and that you'd like to learn more about it to decide if taking PrEP is a good idea for you. Tell them that you are concerned about your risk for HIV, and bring up any other questions you have about HIV prevention, transmission and treatment.

Having Trouble Finding a Doctor to Prescribe PrEP?

The drugs that make up PrEP have been around for years, but they have just recently been approved for HIV prevention. As a result, many doctors are still not aware of PrEP or do not feel comfortable prescribing it to HIV negative patients. You do not need to see an HIV specialist to get PrEP; any health provider who can write a prescription may prescribe PrEP.

If your doctor will not prescribe PrEP, ask them to refer you to another doctor who is more knowledgeable about HIV prevention such as an HIV specialist. You may also refer your doctor to the Center for Disease Control's interim guidelines for PrEP and the National HIV/AIDS Clinicians’ Consultation Center’s Warmline for professional guidance on prescribing PrEP.

If your doctor still can't or won't help you, there may be other resources in your community. If your city has an LGBT center or AIDS service center, they may keep a list of providers who are PrEP friendly. My PrEP Experience is an online resource center for helping patients finding PrEP counseling.

PrEP and Clinical Trials

There are many clinical trials for PrEP going on throughout the world in which PrEP is given to participants for free in exchange for regular doctors visits and blood analysis for research. You can check the AIDS Vaccine Advocacy Coalition's website for a list of current PrEP studies in the U.S.

Private Health Insurance and PrEP

Many private insurance plans cover PrEP just like any other medication although some may have pre-authorization requirements. The only way to be sure is to ask your insurance provider. If your plan covers PrEP, you will likely have to pay the normal co-pay amount for brand name drugs.

In the United States, there is only one PrEP drug currently available, and it is extraordinarily expensive at about $13,000 out-of-pocket per year.The manufacturer offers a co-pay assistance program for people with health insurance who need help affording PrEP.

PrEP Without Health Insurance

People without health insurance may have several options for obtaining affordable PrEP. The U.S. Food and Drug and Administration has allowed pharmaceutical manufacturers outside of the U.S. to produce generic forms of PrEP. PrEP is composed of two drugs, emtricitabine and tenofovir disoproxil fumarate, which are packaged together in a single pill and sold under several different names. Anyone can purchase these drugs from abroad, but you still need a prescription to legally possess them, and you still need to have regular doctors visits for side effect monitoring and HIV testing. Only purchase medications from reputable manufacturers and distributors.

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