Spreading the word about HIV prevention with PrEP


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2015-11-30 World AIDS Day 010 Richie DeFilippoRichie DeFilippo, the reigning Mr. Gay Rhode Island 2015, gave the following talk about the importance of PrEP, as part of World AIDS Day at the State House.

I feel honored for the opportunity to speak with you today.  After living in the city of Providence for 12 years, I began the quest for this title after having many conversations with members of our community who had not yet heard of PrEP or Truvada.  PrEP, pre-exposure prophylaxis, is a pill that when taken daily protects your body from contracting the HIV virus.  I saw that we needed to educate our community about the importance of protecting ourselves.  And since being crowned, I have being doing just that.  I have had many one on one conversations with friends, acquaintances and strangers who wanted to know more, but did not know who or where to go.

In my role, I have been happy to spread the word about PrEP and have been joined by many members of our community with this outreach.  At this year’s PrideFest, many organizations that are represented here today and many community volunteers all made a statement in wearing a shirt that said I take PrEP.  Creating a sea of Truvada blue tee shirts that answered questions, “like what is P.R.E.P?,” “How does it work?,” “Where can I get it?,” and most commonly asked “How much does it cost?”

So standing here today I ask all of you, our honorable legislators and leaders to think about the following issues surrounding PrEP.

While programs, including condom distribution, peer outreach, HIV and STI testing and treatment, have been effective regarding prevention efforts amongts gay and bisexual men, they have had little influence on decreasing the incidence of HIV infection amongst this population.

In addition, these efforts do not necessarily provide education about PrEP, and do not address the specific barriers these men face with respect to PrEP initiation, and subsequent adherence.

Barriers to PrEP Initiation

Numerous studies have shown that gay and bisexual men, overall, have limited knowledge of PrEP, and among those who are aware of PrEP, there remain many unanswered questions in deciding whether PrEP is right for them. This is not surprising as the diffusion of new knowledge clearly takes time, but certainly more can be done to educate gay and bisexual men about PrEP.

A few examples are targeted PrEP media campaigns, community forums at venues where gay and bisexual men congregate, and on online hookup sites, such as Grindr and Scruff.  What is most important to highlight, in my opinion, is once PrEP was described to the men in these studies, interest in the use of PrEP was very high.

Real World Issues

To date, studies of PrEP initiation have largely been limited to settings in which PrEP is provided free of charge, almost universally by Gilead Sciences, the manufacturer of the drug. Barriers to PrEP initiation in real world settings are much more complex, since payment for PrEP can be a substantial financial burden, particularly without health insurance coverage or large annual deductibles or associated prescription co-pays.

Although most health insurance programs are covering the cost of PrEP, and the Gilead Truvada for PrEP Medication Assistance Program exists to assist people who do not have health insurance, these programs require patient and clinician awareness, sufficient staff training to overcome system challenges and the ability to work through barriers that may come up while providing a reliable infrastructure for carrying out the work.

Medical Providers

As it relates to medical providers, studies have shown a misinterpretation of the results of PrEP efficacy trial data. This raises concerns about how to best educate physicians to translate the results of the PrEP studies to their patients. These concerns suggest that educational interventions designed to increase physicians’ awareness and interpretation of PrEP study data may be needed to optimize PrEP provision. Studies have also shown that generalists (primary care docs) are less familiar with PrEP efficacy results than were HIV specialists. This is particularly relevant since most persons at risk for HIV are not likely to seek care from HIV specialists.

Given that physicians are not often comfortable discussing sexual behavior with their patients, innovative provider education programs are needed for PrEP to be more widely available.

Additionally, given the well-documented links between physicians’ concerns about PrEP and their prescribing intentions, educational interventions that provide information on the safety of PrEP, and its anticipated financial impact on HIV prevention budgets, may be most effective in motivating physicians to appropriately prescribe PrEP.

Barriers to Taking PrEP Once Prescribed

In addition to some of the challenges and misinformation I just spoke about, there are additional barriers of taking PrEP once it is prescribed. The effectiveness of PrEP is closely tied to adherence, and evidence suggests that effectiveness decreases exponentially with fewer doses of PrEP per week. When 6-7 doses are taken per week, maximum effectiveness of PrEP is achieved and when at least 4 doses per week are taken, patients still have a high level of protection.

From scientific literature and my own personal ties to the gay and bisexual male community, we know that certain subgroups of gay and bisexual men face multifaceted challenges to optimal adherence, including stigma, inconsistent routines, substance use, depression and other mental health problems.

In addition, victimization, fluctuations during periods of sexual risk, and potential perception by their sexual partners that they are HIV positive can also deter individuals. Concerns and questions around insurance coverage and access to financial assistance also are significant challenges that may affect both initiation and adherence to PrEP.

In closing, I feel that the development and testing of an intervention that addresses the barriers and facilitators to PrEP uptake and adherence among gay and bisexual men is necessary to ensure maximum PrEP effectiveness.

I would like to thank Dr. Phillip Chan and Dr. Matthew Mimiaga for their support and guidance and The Rhode Island HIV Prevention Coalition for having me here today. I hope you will all join me in continuing to educate our community about the opportunity and effectiveness of PrEP as we work together to stop the spread of new infections of the HIV virus.

Ahead of World AIDS Day, RI leaders launched ambitious 90-90-90 Plan


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2015-11-30 World AIDS Day 005 Nicole Alexander-Scott
Dr. Nicole Alexander Scott

Dr. Nicole Alexander-Scott, director of the Rhode Island Department of Health, alongside Providence Mayor Jorge Elorza and Governor Gina Raimondo signed the Paris Declaration in a State House ceremony Monday.

In signing the declaration, the three leaders committed to putting Providence and Rhode Island “on the Fast-Track to ending the AIDS epidemic through a set of commitments. Those commitments include achieving the UNAIDS 90–90–90 targets, which will result in 90 percent of people living with HIV knowing their HIV status, 90 percent of people who know their HIV-positive status on antiretroviral treatment and 90 percent of people on treatment with suppressed viral loads, keeping them healthy and reducing the risk of HIV transmission.

“Rhode Island and the Providence partnership that we’re doing together, represents the first city/state group to join this world wide 90-90-90 campaign.” said Dr. Alexander-Scott in announcing the new effort.

2015-11-30 World AIDS Day 001 Kira Manser
Kira Manser

The announcement and signing ceremony came as part of the Rhode Island HIV Prevention Coalition‘s event held ahead of World AIDS Day 2015, which is today. The event was hosted by Kira Manser, the coalition co-chair.

Speaking at the event was Dr. Philip Chan, who works with AIDS patients at Miriam Hospital. Chan said that to curb the spread of HIV we must concentrate on a few areas. First, we must focus on access to care, especially among gay and bisexual and other men who have sex with men. Second, we must “address other STDs like syphilis, which has increased exponentially across the country. Third, we need to perform routine, opt-out HIV testing, to make sure that everyone gets tested at least once in their life. Fourth, we need to get people who are HIV positive on PrEP and lastly we need to need to work together, government and health officials, to end the epidemic.

Richie DeFilippo, the reigning Mr. Gay Rhode Island, explained the importance of PrEP, pre-exposure prophylactic. “PrEP is a preventative measure of HIV negative individuals to take daily to prevent them from contracting the virus.”  It’s a pill taken once a day, but it is very expensive without insurance. DeFilippo aspoke of some of the social and economic barriers that prevent the effective use of PrEP.

Stephen Hourahan, executive director of AIDS Project RI, talked about the stigma still attached to the disease. Hourahan talked about the misunderstanding and stigma attached to the Charlie Sheen announcement. Stigma prevents many from getting tested for HIV, and increases transmission as a result.

The most energetic talk was given by Paul Fitzgerald of AIDS Care Ocean State. “Prevention without advocacy is no justice,” said Fitzgerald, before coming out from behind his podium and leading the audience in activist style chants. “We are not silent! We are not silent!” he shouted to applause. “We have activism to reach! We have people to change! We have policy to make! We have initiatives that must come about, to fruition. And it starts with us. It goes beyond these doors. Every place that we are we should be fighting about AIDS. We should be fighting about those people who cannot access services because they are not there, because they are not paid for, because there’s a political issue.”

2015-11-30 World AIDS Day 010 Richie DeFilippo
Richie DeFilippo
2015-11-30 World AIDS Day 009 Paul Fitzgerald
Paul Fitzgerald
2015-11-30 World AIDS Day 008 Stephen Hourahan
Stephen Hourahan
2015-11-30 World AIDS Day 007 Gina Raimondo
Gina Raimondo
2015-11-30 World AIDS Day 006 Jorge Elorza
Jorge Elorza
2015-11-30 World AIDS Day 004 Nicole Alexander-Scott
Nicole Alexander-Scott
2015-11-30 World AIDS Day 003 Philip A Chan
Philip A Chan
2015-11-30 World AIDS Day 002 David Cicilline
David Cicilline

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AIDS Walk RI remembers the past, challenges the future


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2015-09-13 AIDS Walk RI 049Participants and observers of the AIDS Walk RI opening ceremonies were given a treat when Ronald Lewis, activist poet and actor, spoke about the forgotten transgender, women of color origins of the Stonewall Uprising, the birth of the LGBTQ liberation movement. Marsha P. Johnson and Sylvia Rivera are only recently being given the recognition they deserve by history, they are true heroines in the ongoing struggle for full rights for all persons, and to be reminded of their contributions ahead of an important walk to raise money to combat the scourge of HIV and AIDS was invigorating.

Do yourself a favor and watch this video.

2015-09-13 AIDS Walk RI 008This year’s theme for AIDS Walk RI was “Keeping Hope Alive” and despite the reality of nearly 100 new cases of HIV being diagnosed in our state every year, there is hope that one day HIV will be eradicated. Dr. Philip Chan, MD, from the Miriam Hospital’s Immunology Center said that giving a positive HIV diagnosis to a patient is the worst part of his job. He talked about the virtues of a new drug, PrEP, a pre-exposure prophylaxis that prevents the transmission of HIV.

2015-09-13 AIDS Walk RI 052Dr. Nicole Alexander-Scott, MD, MPH spoke of three foci at the RI Department of Health, where she is the director. “We want to continue to enhance partner services, making sure that people know how to stop their partners from getting infected by raising awareness. getting tested and letting them know about PEP ad PREP. We also want to highlight our ‘men who have sex with men communities’ that are disproportionately affected by HIV and syphilis and some of the other STDs… our third priority is also highlighting our youth and our communities of color, where there are higher rates of STDs as well as HIV.”

2015-09-13 AIDS Walk RI 034Members of Hope Harris‘ family gathered on stage to present the “Hope Harris Award.” Harris was a member of the AIDS Project RI board for the last part of her life.  She was also a longtime receptionist for the late Senator John Chafee and also served in Senator Lincoln Chafee‘s office. She was known as a kind and deeply religious person who recognized the value of person, without regard to race, orientation or gender identity.

The award was presented to the amazing Paul Fitzgerald, president and CEO of AIDS Care Ocean State. He was the founding executive director of “Family AIDS Center for Treatment and Support” (FACTS) for children with HIV. FACTS was one of the first 13 pediatric AIDS demonstration projects in 1988. FACTS grew into a full-service AIDS organization, and merged with “Sunrise House” to become AIDS Care Ocean State.

Entertainment was provided by the Providence Gay Men’s Chorus, and other speakers included by Mayor Jorge Elorza, RI State Treasurer Seth Magaziner and US Representative David Cicilline. Cicilline lead the event in a moment of silence for Guy Abelson, well-known local philanthropist, who passed away recently and was deeply involved in the fight against HIV/AIDS.

AIDS Walk RI  2015 was conducted by  AIDS Project Rhode Island, a division of Family Service of Rhode Island, and AIDS Care Ocean State.

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PrEP: Why aren’t you on it?


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Josh Kilby, activist and healthcare worker
Josh Kilby, activist and healthcare worker

I’m a healthcare worker, Queer activist, and consider myself to be pretty well-informed and connected and yet if you had asked me about PrEP as recently as September, I would have wondered what you are talking about. I’m up here today because I feel that the word PrEP needs to be on the lips of every sexually active person and the people they love.

PrEP which stands for Pre-Exposure Prophylaxis is a once a day dose of an anti-retrovirus drug called, Truvada; which is also used for people who are HIV Positive to help keep viral loads low, but in people who are negative, if exposed to HIV, kills the virus before it has the chance to infect you. Numerous studies have shown it to be pretty darn effective.

Being newly single, and sexually active, this naturally piqued my interest; if a one a day pill can help prevent an unwanted condition, why wouldn’t I be on it?

But for good measure, I took to social media to see if anyone in my extended networks had any thoughts or experiences with it. The results were somewhat unsurprising, but worth breaking down:

Two people reached out to me privately to tell me their stories, which were well-received and appreciated, but I wondered why they didn’t feel safe to say publically they were PrEP users. Until I saw some of the other public responses (most of which were positive), but there were a strong current of people who were telling me that I weren’t being “sleazy” I wouldn’t have to worry about this or that they felt that this pill will encourage “bad” behavior.

Kilby and Dr. Amy Nunn
Kilby and Dr. Amy Nunn

This line of thought is nothing new…54 years after the Birth-control Pill hit the market and 41 years after safe and legal abortion was won, people are still saying that contraception will encourage “bad” behavior.

Well I’ve got news for them. “Bad” behavior does not need encouragement. At all. And furthermore, there is nothing bad, dirty, or shameful about sex. We owe it to ourselves, our partners, and the people we love to first and foremost, enjoy ourselves, but also to do everything we can to protect ourselves and other.

We as a society need to come to grips with the fact that sex-positive and queer-inclusive sex education not being a part of our public school curriculum is nothing short of a public health crisis; creating a layer of young people with lots of misinformation and questions who are afraid to seek out answers for fear of judgment. This is dangerous. Silence, in this case, literally equals death.

I, along with my Doctor, Dr, Chan, did decide that going on PrEP was the right decision for the type of life I lead. I was very fortunate to thus far not experience and of the side effects (nausea, vomiting etc.). And if you’re wondering, it didn’t encourage and more or less “bad” behavior.

To conclude, I would be remiss if I didn’t discuss how equally important access to this drug is to it’s availability. I am lucky in that I have a good job with good health insurance, so access to PrEP was no issue for me. But there are so many people in vulnerable demographics (I think of sex-workers and IV drug users especially) may not be as lucky and cannot afford to pay the over $1500 out-of-pocket cost of a monthly supply of Truvada. PrEP has the potential to make new HIV infections a thing of the past, but it cannot do that if no one’s heard of it and people who need it the most cannot access it.

These are the facts, but our challenge as healthcare providers, law-makers, activists, and people who want to see a world without HIV/AIDS is to overcome them. We have come so far already; research in tandem with activism has taken HIV for a death sentence to a chronic, but mostly manageable condition, and now we have the capability to prevent it in the first place. We need to be screaming about this from rooftops, flyering every gay bar, I also liked Dr. Nunn’s idea about using sites like grindr and scruff as tools for outreach, and also making the phrase “ask your doctor about PrEP” as recognizable a slogan as “get tested” and “know your status” is now!