Your Experience is a Gift

For questions about PrEP in general, and for a Chicago/Illinois specific provider listing, visit

Friday, May 30, 2014

Rico - "Judge me if you want and call me a Truvada whore, I don't care"

by Rico
West Palm Beach, Florida

I have been on Travada for 4 months now. My primary care giver who is gay and have been going to for 30 years didn't know about PrEP which shocked me. He then referred me to an infectious disease specialist who shook her finger at me about condoms and the need for them.

I just looked at her and said "I'm 54 years old and HIV negative and I'm here for the drug, are you going to fucking give it to me?" 

There seems to be a never ending need to cling to the past, one which I might add is not working so well for the "old school" weather it's straight or gay, the infection rates continue to climb.

I'm thrilled I met someone on a hookup in NYC who talked to me about it which started my journey to get on it. Since being on the drug I talk to everyone about it, judge me if you want and call me a Truvada whore, I don't care.

The only side effect I have experienced were dreams and they have faded over the months. Other than that, nothing.

Happy in Florida.

Tuesday, May 27, 2014

VIDEO: Eric's 34th Day on Truvada as PrEP - No Regrets and Peace of Mind

via Eric McCulley
Atlanta, Georgia

I don't have any regrets, but what I do have is peace of mind. And that is exactly what I was looking for with this medication. 

I feel great, I feel empowered, and I feel in control of my sexual health and my health in general.

Eric was recently interviewed about PrEP by the NPR affiliate station in Atlanta.
Check it out here.

Tuesday, May 20, 2014

That's What He Said Part 2 - Jody's Persistence (and Community Support) Pays Off

“Come in and see me. Tell me more and let’s get this fixed,” he said....

...While my experience with Doctor Nameless wasn’t ideal, it was eye-opening. If it had to happen to someone, I’m glad that was someone who had the tools, resources, and voice to find a better solution and seek a change.

by Jody Wheeler*

When I say “bitch” I didn’t mean randomly. Facebook is mostly just cat pictures, traffic complaints and filtered selfies, after all. Noise not signal.

Yet there are some great groups on Facebook, pages on a wide variety of issues, run by people who interested in sharing information, providing support, and making things better. PrEP Facts: Rethinking HIV Prevention and Sex, is one of those Facebook groups.

PrEP Facts was started by Damon Jacobs, a therapist and PrEP activist from New York City. I’d found his group it while researching PrEP and Truvada. While often raucous and combative, that energy comes from its passionate membership — doctors, educators, epidemiologists, regular folk — deeply committed to getting the word out about PrEP. Information, resources, and support are all to be found there. I knew I needed to post there.

On-line, I recounted a (far briefer) version of my visit with Doctor Nameless. At the end of my tale, Iasked the group for both help in finding a better doctor and more information on bone-density loss, the one aspect of my recent craziness I wasn’t up on. I didn’t give Doctor Nameless’ real name out in the public forum. His medical group — UCLA Health — that I eventually stated.

In spite of my experience, I wasn’t looking to start an internet pogrom of torches and angry villagers against the man. It was important to get the facts out, to find out if what I went through was a common experience, but not to lambast someone by name, just as an example. I did decide that, on a case by case basis, if appropriate, I would disclose his name.

The response from the PrEP facts group was overwhelmingly affirmative. Not just posts that commiserated with me, but actual, hands down great advice and recommendations. The names of good doctors from across the city poured in. Some people even recommended I fly to their city to see their doctor or go to the clinic they worked at. It wasn’t lost on me that was something I might be able to swing, but what about all those other folks that couldn’t?

The thing that most surprised me were the numbers of folks who told me that Doctor Nameless’ response was unethical, bordering on malpractice.

I hadn’t thought about it in those terms. Annoying? Sure. Maddening, no doubt. Bang-off-the-walls-and-jump-in-a-lake-of-ice-cubes? It felt that way. But the ethical or malpractice suggestion gave me pause.

The American Medical Association says that, as patients, we have the:

“…. right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives. Patients should receive guidance from their physicians as to the optimal course of action…The patient has the right to courtesy, respect, dignity, responsiveness, and timely attention to his or her needs.”

which translated as requiring patients to receive correct information, to treat our concerns as real, and not to have a physician substitute their values for our own. For mine.

Another group member compared what happened to what some women have experienced from certain doctors and pharmacists when they ask to go on the Pill. While I’m still not convinced Doctor Nameless engaged in malpractice, in light of that comparison and the AMA’s standards, I don’t think what happened was all that ethical.

The most surprising thing that happened as a result of my post was that another physician from UCLA Health reached out and got in contact with me, Dr. Raphael Landovitz. Landovitz is a researcher and practitioner, the co-director also Co-Director of the UCLA CARE clinic, which is specifically devoted to the care and prevention of HIV. He’s also been at the forefront of implementing PrEP across Los Angeles.

Monday, May 19, 2014

That's What He Said - Part 1

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation.

by Jody Wheeler*
Los Angeles, CA

As the elevator dinged downward, my headache ripped free the sides of my skull, pounded the torn pieces into a fine mist, and set to work violently assaulting the naked nerves.

Things hadn’t gone well.

Not at all.

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation. The first two of those belonged to my doctor. The last, as my pounding head attested, me.

Picture for a moment a 40-something white guy, a poster-child for education, a beneficiary of cultural privilege, a fortunate freelancer taking advantage of newly affordable health care (Thanks, Obama!), visiting a doctor for, among other things, PrEP. Picture me. Picture me dashing. I like dashing. Dashing is a good, charismatic word. Picture me stunning if you like. That works to. No complaints.

Anyway. I sat in a brightly lit medical exam room, paper-wrapped table in front of me, ample selection of children’s toys near me (the office had a thriving pediatrics practice) an uncomfortable wire backed chair under me, and a friendly-faced doctor beside me. “Doctor Nameless,” as I shall refer to him, as “Anger Inducing Ignoramus” is too long to repeatedly write of this essay. He’d been typing notes of my visit into his handy medical records terminal.

“Anything else for this visit?” he asked with a smile.

“I’d like to go on PrEP,” I said.

His friendly countenance faded, as dark clouds of concern descended across his brow. “What do you know about PrEP?” he said, the storm building with each word.

I rattled off six months of constant reading: PrEP stood for “Pre Exposure Prophylaxis”, where the drug Truvada is taken daily as a preventative against HIV infection; multiple studies have shown consistent and correct use provides a level of protection against HIV equal to or better than condoms; the side effects of Truvada were generally mild to non-existent in healthy individuals, but still needed to be monitored for safety; that most major insurance carriers now covered the drug; and best of all, from an epidemiological standpoint, Truvada protects against HIV even when people miss a dose.

Hoping for a cookie, Doctor Nameless instead gave me an unexpected response: he said neither he nor any other doctor in his practice would prescribe Truvada for PrEP. He stated Truvada’s protection is uncertain and unproven, it destroys the body, and leads to long term and dangerous health consequences.

“In those studies, scientists don’t even know if it was the Truvada or the condoms that provided the protection people keep quoting,” he said with utter seriousness.

Dafuk? went the 12-year old smart-ass who lives in the back of my head. Did you check to see if he’s actually a doctor and didn’t just borrow a coat from someone golfing —

Yes. Shut up and let me talk, I told that 12-year old smart-ass who lives in the back of my head.

“That’s not what the research shows,” I began. I tried not to sound like a know-it-all. I failed. I always fail in these moment. I do try. Researchers had correlated blood serum levels of Truvada with the preventative effect achieved. It was all about the pills, not the condoms. While I wasn’t an expert on biology, the methodology provided in the journals was powerful stuff. “The research is quite robust,” I finished.

My pushback surprised him. I guess patients usually don’t respond with sentences containing “journal articles”, “blood serum levels”, and “methodology.”

He pivoted the conversation and said Truvada would destroy my kidneys. His words echoed as my mouth had fallen open from utter incredulity, thus providing the perfect acoustic shape between my tounge, throat and teeth for his silliness to bounce and fade, bounce and fade.

Get out. Get out now! Run, dude! Runaway! Again, the 12-year old smart ass who lives in the back of my head.

Know-it-all me engaged Doctor Nameless again. I told him there was little evidence of that in HIV negative people. Some research subjects did have their kidneys work harder, but for most of them, that passed. Very few people in the study had to stop treatment because of a risk of damage. In any event, medical guidelines still mandated monitoring for just that possibility.

Again, not what he was expecting, as our conversation veered into a new, oncoming traffic lane of screeching, beeping, destruction: Sexually Transmitted Infections (STIs). “Truvada doesn’t protect against STIs, so it isn’t safer sex,” he said rather definitively.

The headache I mentioned at the top of this essay? This is the exact moment when it started. I remember distinctly. It walked in, said Hey, I’m here. I’ll be your headache for the next few hours. I’m going to start banging around, driving you nuts. I brought friends. I think we’re ordering pizza, too, and got to work causing my head to hurt.

Thursday, May 15, 2014

UPDATED NUMBER - 116 Leading HIV/AIDS groups (and allied orgs) endorse CDC HIV PrEP Guidelines

[May 20 update: The current list of sign ons has gone up to 116 - and the list below the letter reflects the new number. Organizations - and now individuals as well - are invited to sign on here.]


PrEP is a powerful, additional tool in the AIDS response

Thursday, May 15, 2014 — A group of 69 82 116 leading HIV/AIDS and health organizations HIV/AIDS and health organizations and allies today reiterated their strong support for oral pre-exposure prophylaxis (PrEP) as an important HIV prevention strategy for men and women at risk of HIV infection. The diverse group of advocates, researchers and service providers hailed new HIV PrEP guidelines from the US Centers for Disease Control and Prevention (CDC) as a science-driven, public health approach to what remains a major health crisis in the United States.

The guidelines come almost two years after the US Food and Drug Administration (FDA) approved the oral drug Truvada (TDF/FTC) for HIV prevention following an extensive review of data from multiple, multinational clinical trials of PrEP among men and women with different risks for HIV infection. In the time since FDA approval, the CDC has reviewed additional data and sought input from a range of experts and community members to develop these new guidelines.

The guidelines provide critical information to help healthcare providers and patients evaluate the suitability of oral PrEP as an HIV prevention option and ensure that those who choose PrEP have the support – including ongoing monitoring, counseling, adherence support and frequent HIV and STD testing – necessary for PrEP to be effective.

The group strongly condemns the harmful misrepresentations of the facts and anti-scientific approach to PrEP adopted by the AIDS Healthcare Foundation and its president Michael Weinstein. Weinstein continues to make assertions that are not grounded in scientific evidence. We reject statements from all quarters that add to the deep stigma attached to HIV and that erect barriers between people and what they can use to support their health.

Weinstein’s statement that widespread use of PrEP will be accompanied by “a shift to condomless sex” is not based on evidence. In fact, initial studies suggest the opposite, and Weinstein’s assertion underestimates the capacity of informed individuals to make decisions about their health and sex lives. We all must do more to reinvigorate the approach to correct and consistent condom use and underscore that PrEP and condoms are complimentary interventions to the prevention of all STDs, including HIV. But Weinstein's statements fail to recognize that many adults – in the United States and across the world – have not been using condoms consistently or correctly for a host of reasons. PrEP now provides an additional option that also provides significant protection against HIV.

The current scientific evidence clearly indicates that PrEP, when taken daily as directed, can reduce the risk of HIV infection by more than 90 percent. CDC’s PrEP guidelines, like public health guidelines aimed at helping prevent other diseases, outline the support needed to help patients adhere to the daily dosing. The idea of taking a daily pill for prevention is not new: millions of women have successfully taken contraceptive pills to prevent unintended pregnancy, and men and women are able to take a variety of medications to treat or prevent a range of health issues.

The CDC PrEP guidelines underscore that PrEP is not for everyone. Neither CDC nor any of our organizations are advocating for indiscriminate use of PrEP. Neither is anyone suggesting that oral PrEP is a replacement for condoms; rather it is an additional option from which individuals should be able to choose.

PrEP has the potential to help many individuals in the US and around the world protect themselves from HIV. Failure to strategically, effectively and responsibly implement this scientifically sound strategy as part of comprehensive prevention and treatment programs in our fight against HIV would be a true catastrophe. We support the CDC guidelines, and, more importantly, we support the right of informed adults to choose the most appropriate mix of HIV prevention options for their lives as part of truly comprehensive approaches to testing, treatment, care and prevention.

Organizational sign ons: (updated May 20)

30 for 30 Campaign
ACT UP New York
AIDS Action Baltimore
AIDS Action Coalition
AIDS Action Committee
AIDS Alabama
AIDS Alliance for Women, Infants, Children, Youth & Families
AIDS Community Research Initiative of America (ACRIA)
AIDS Foundation of Chicago
AIDS Research Consortium of Atlanta
AIDS Resource Center of Wisconsin
AIDS Resource Center Ohio
AIDS Treatment News
AIDS United
American Sexual Health Association
amfAR: The Foundation for AIDS Research
Amida Care
Asian & Pacific Islander Wellness Center
ASPIRA Association
Association of Nurses in AIDS Care
Bay Area Perinatal AIDS Center (BAPAC)
Between the Lines Newspaper
Black AIDS Institute
Cascade AIDS Project
Center for Health & Gender Equity (CHANGE)
Center for HIV Educational Studies and Training (CHEST), Hunter College, CUNY
Chicago Center for HIV Elimination
Chicago House and Social Service Agency
Chicago Women's AIDS Project
Community Access National Network-CANN
Delaware HIV Consortium
East Bay AIDS Center
End AIDS Now!
Equality Michigan
FHI 360
Friends For Life, Memphis
GAT Portugal
Gay City Health Project
Gay Men's Health Crisis (GMHC)
Georgia Equality
Harlem United Community AIDS Center
Harm Reduction Coalition
Hispanic AIDS Forum
HIV Medicine Association (HIVMA)
HIV Prevention Justice Alliance
House of Joe
Housing Works
Howard Brown Health Center
Hyacinth AIDS Foundation
Inova Juniper Program
International Rectal Microbicide Advocates (IRMA)
Justice Resource Institute (JRI)
L.A. Gay and Lesbian Center
Lambda Legal
Lansing Area AIDS Network
Latinos Salud
Legacy Community Health Services
Long Beach AIDS Foundation, Inc.
Los Angeles County PrEP Workgroup
Los Angeles County Public Health Social Justice Caucus
Louisiana AIDS Advocacy Network
Maritime Life Precious Foundation
Minnesota AIDS Project
Mr Friendly
Multicultural AIDS Coalition
Nashville CARES
National Alliance of State & Territorial AIDS Directors (NASTAD)
National Association of County and City Health Officials
National Association of Social Workers
National Black Leadership Commission on AIDS, Inc.
National Coalition of STD Directors (NCSD)
National Female Condom Coalition
National Minority AIDS Council (NMAC)
National Women's Health Network
NO/AIDS Task Force
Ohio AIDS Coalition
Pediatric AIDS Chicago Prevention Initiative
Positive Women's Network- USA
PrEP for New York City Task Force
Program for Wellness Restoration
Project Inform
Project PrEPare
Puerto Rican Cultural Center-Vida/SIDA
San Francisco AIDS Foundation
Scott A. Kramer, LCSW
Sociologists AIDS Network
Southern AIDS Coalition
Southern HIV/AIDS Strategy Initiative
St. Louis Community PrEP Implementation Project (C-PIP)
START at Westminster
Tennessee Association of People With AIDS
Test Positive Aware Network
The AIDS Institute
The Network for Multidisciplinary Studies on ARV-based HIV Prevention (NEMUS)
The Stigma Project
The Well Project
The Women's Collective
Treatment Access Expansion Project
Treatment Action Group
Urban Coalition for HIV/AIDS Prevention Services (UCHAPS)
US Women & PrEP Working Group
Valley AIDS Information Network Inc.
Whitman-Walker Health
Women With a Vision
Woodhull Sexual Freedom Alliance

Wednesday, May 14, 2014

CDC/U.S. Public Health Service Release Cinical Guidelines on PrEP for HIV Prevention

This is MAJOR.

Click here for the full guidelines.

CDC's press release (text below)

New guidelines recommend daily HIV prevention pill for those at substantial risk
Could have significant impact on the U.S. epidemic if targeted and used as directed

Health care providers should consider advising the use of anti-HIV drugs by uninfected patients who are at substantial risk of infection, according to new clinical guidelines.

PrEP, or pre-exposure prophylaxis, could reduce HIV infection rates. When taken daily as directed, PrEP can reduce the risk of HIV infection by more than 90 percent. Inconsistent use results in much lower levels of protection. 

“HIV infection is preventable, yet every year we see some 50,000 new HIV infections in the United States,” said CDC Director Tom Frieden, M.D., M.P.H. “PrEP, used along with other prevention strategies, has the potential to help at-risk individuals protect themselves and reduce new HIV infections in the United States.”

The guidelines were developed by CDC in partnership with other federal health agencies, public health experts and community leaders.

The guidelines say PrEP should be considered for HIV-uninfected patients with any of the following indications:

•         Anyone who is in an ongoing sexual relationship with an HIV-infected partner.

•         A gay or bisexual man who has had sex without a condom or has been diagnosed with a sexually transmitted infection within the past six months, and is not in a mutually monogamous relationship with a partner who recently tested HIV-negative.

•         A heterosexual man or woman who does not always use condoms when having sex with partners known to be at risk for HIV (for example, injecting drug users or bisexual male partners of unknown HIV status), and is not in a mutually-monogamous relationship with a partner who recently tested HIV-negative.

•         Anyone who has, within the past six months, injected illicit drugs and shared equipment or been in a treatment program for injection drug use.

“While a vaccine or cure may one day end the HIV epidemic, PrEP is a powerful tool that has the potential to alter the course of the U.S. HIV epidemic today,” said Jonathan Mermin, M.D., M.P.H., director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.  “These guidelines represent an important step toward fully realizing the promise of PrEP.  We should add to this momentum, working to ensure that PrEP is used by the right people, in the right way, in the right circumstances.”

The guidelines offer providers specific advice on how to give people the support they need to take their pills regularly. Given the need for high adherence and the lack of complete protection from HIV with PrEP or any other single strategy, the guidelines encourage providers to promote and support its use in combination with condoms and other proven risk-reduction strategies.  Accompanying the guidelines is a supplement that includes checklists and interview guides to assist clinicians with PrEP prescribing and counseling.

The guidelines build on interim guidance issued by CDC following the release of research findings on PrEP for men who have sex with men (MSM), heterosexuals, and people who inject drugs.  In 2012, the U.S. Food and Drug Administration (FDA) approved the drug combination of 300 milligrams tenofovir disoproxil fumarate and 200 milligrams emtricitabine (TDF/FTC) for use as PrEP in combination with safer sex practices.

Consistent with FDA labeling, the guidelines stress the importance of HIV testing before PrEP is prescribed and at three-month intervals while a patient is using PrEP.  Regular testing ensures that anyone on PrEP who becomes infected with HIV discontinues PrEP use in order to minimize the risk that the virus could become resistant to the drugs.  Such patients then can begin receiving HIV treatment.

“PrEP is a new approach to HIV prevention that requires continuing collaboration between patients and providers, as effectiveness requires adherence to daily medication and regular medical visits for monitoring, counseling and testing,” said Dawn K. Smith, M.D., M.P.H., the epidemiologist in CDC’s Division of HIV/AIDS Prevention who led the development of the guidelines.  “Individuals will have to decide with their doctor if PrEP is right for them, but for some, this may offer a much-needed strategy to help protect themselves from HIV infection.”

In addition to providing guidelines and tools to assist providers in effectively prescribing and supporting PrEP use, CDC and other organizations are conducting pilot implementation studies and demonstration projects throughout the country.  These projects aim to identify the most effective ways to deliver PrEP in community settings that can reach those at high risk for HIV infection.

The guidelines were announced today in CDC’s Morbidity and Mortality Weekly Report.  The 67-page guidelines and 44-page clinical providers’ supplement are published in full here.


Monday, May 12, 2014

Curtis from Chicago - "Truvada is that extra back up that most people need."

Curtis uses PrEP, a once-a-day pill regimen to help prevent him from getting HIV. It provides an extra layer of safety, so that he can worry less about his sexual health and worry more about school (he's in college) and the stage (he's playing Romeo in an upcoming production of "Romeo and Juliet").

Want to hear Curtis' full story? Visit AIDS Foundation of Chicago's Give Out Day page on May 15. There, you'll have the opportunity to help more people like Curtis become aware of PrEP by making a one-time contribution to AFC. AFC leads the fight against HIV/AIDS by increasing awareness and access for preventive measures like PrEP. Give Out Day is a one-day fundraising drive for organizations that serve America's LGBTQ community.

Can't wait till then? Make a pledge on AFC's Give Out Day page today, and your contribution will be made official on May 15.

Thank you for being on Curtis' side — and on AFC's side. Together, we can increase access to the tools that can put an end to HIV.

AIDS Foundation of Chicago (mother to this blog) believes in the power of PrEP — a revolutionary approach to preventing HIV transmission.


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